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Hi ,

Thanks for the welcome, we are greatful to have met a wonderful person on the

JRA Group who also has a daughter with CVID....who belongs to this group as

well. She told us that you guys were awesome and so helpful with this disease.

I am so greatful to Maggie's Rheumatologist for shipping us to an

Immunologist, I only wish the two of them were in her life at a much earlier

age. Especially now knowing that it was because of the lack of

knowledge that her PIDD exsisted that caused her autoimmune disease. Her

immunologist feel's that this could have been prevented or at least not have

come at such an early age if they would only have known.

At this stage of the game we are just so thankful that the biggest puzzle of

Maggie's health has been found. With everything else that she has, this is by

far the scariest. The rest of her health issues are what they are, no

cure.....but tolerable.(Immune and Autoimmune are taking a toll on her)

Maggie does have a port, she is actually on Port #7. She has lost three to

infection and 4 because of either out growing them or having other

complications. She has had 6 PICC lines placed to compensate inbetween ports.

She is a horrible stick and has had IV's in the strangest places but none of

them will hold for more than 24 hours. Most of them blow immediately. However

she is looking forward to the Sub Q. She loves her nurses, but our insurance

will only cover the infusions of IVIg if she stays for 24 hours......not so much

fun for her, she wants to come home.

She has grown up in hospitals having spent 3 solid months in the spring of

2006 and once again from January- June in 2007 with the exception of two weeks

when we broke out to try and take the kids to Disney World only having to come

home early because she started running temps of 105. (another bloodstream

infection)

Thanks to IVIg the spring of 2008 was spent here, at home! She only goes in

now for infusions over night every other week of IVIg and 4 days every 3 months

for her Pamidronate (for bone density).

I am extremely sad that any child would not have a perfectly working immune

system, but after spending the last 11 years wondering if this was the one

infection that was going to take her from us.....still having no answers why she

did not respond to antibiotics they way she should, or why she was getting these

infections to begin with. I now am just thanking God for guiding Maggie's

doctor's in the right direction so that we can better the Quality of her life.

Even if it means needle pokes and a couple yucky days to help her.

I am glad to hear your son is using the Sub Q. It will be such a great

experience for Maggie to be home inbetween her bone infusions and ONLY need to

go to peds once every 3 months,this will be a whole new life for her and for the

rest of our family as well!

Smiles and Sunshine from Iowa!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis,PIDD)

> From: rfrench496 <bluemtnfarm@...>

> Subject: Re: New to your group! (kind of long)

>

> Date: Monday, August 18, 2008, 12:12 PM

> Hi Diane-what a heartbreaking road you have had. I'm

> sorry for the

> ordeal you're daughter has been through, but am glad to

> hear things

> are looking up for her with treatments and fewer

> infections! It

> sounds as though you have a good team of doctors on your

> side, which

> is more than half the battle!

>

> Mark is 7 and was diagnosed with a PID at 3 months--finally

>

> determined he had CVID at age 2. He has some other anemia

> issues

> too. He was on IVIG from 3 months until 2 weeks ago, when

> we started

> subQ. I think it is much, much better for him as he is an

> extremely

> poor stick with his veins about gone from 7 years of

> countless

> transfusions/labs/IVIG. Also, it keeps their levels more

> constant,

> which it sounds like they are trying to do with your

> daughter.

>

> Best wishes to you,

> mom to Mark 7 CVID

>

> >

> > Hello to Everyone,

> >

> > Just wanted to introduce myself and my

> daughter Maggie to

> your group.

> > My name is Diane and my husbands name is Brad.

> We have 4

> beautiful daughters, Caitlyn age 19, le age 18,

> Allyson age 14

> and Maggie age 11.

> > Maggie was born with a bone disease called

> Osteogenesis

> Imperfecta. She has had hundreds of broken bones in her

> life so far,

> we have been giving her infusions of a med called

> Pamidronate since

> age 4 and she is doing wonderful since. On the average she

> breaks

> about 4 times per year instead of 4 times per month now.

> > She also has CP. She had a Baclofen Pump

> placed in her

> stomach to help with muscle spasticity at age 7 and is

> doing

> wonderful for that now and is even able to walk short

> distances. (up

> to about 30 feet)

> > She has been sick her whole life, ear

> infections, pnemonia

> requiring many hospitalizations for IV meds, sinus

> infections, staph

> infections, kidney infections with bactera such as

> Pseudomonas,

> bloodstream infections, cellulitis, and recently

> Disseminated

> Histoplasmosis (a fungal infection in her bloodstream). But

> it wasn't

> until we almost lost her for the 3rd time last spring and

> she was

> diagnosed with Systemic JIA, that her Rheumatologist

> suggested seeing

> an Immunologist because she was always so sick. At that

> point she

> was 9 years old and for 9 years her doctors blamed all of

> her

> illnesses on the fact that she has OI.(broken bones yes,

> infections....no)

> > Maggie was diagnosed with Primary Immune

> Deficiency last

> April, it has taken her Immunologist months to pinpoint an

> actual

> name because some of her infections have been so huge.

> Finally two

> weeks ago they sent us a letter stating that she falls into

> the

> catagory of CVID,more on the severe end of things, having

> low

> immunoglobulins, low switching B cells, Raging Cytokines,

> autoimmune

> disease which has attacked all of her internal organs as

> well as her

> joints and the list went on. We were told that her Immune

> Deficiency

> was what caused her autoimmune disease.

> > Even while on 40mgs of Prednisone,

> Methotrexate, Celebrex

> for her arthritis she was still having up to 27 stools a

> day and had

> ulcers all over her body on her skin which would not heal

> even after

> months of antibiotics and Hyperbaric Oxygen Therapy.

> > Maggie's doctors started her on IVIg in

> February. In

> February it was more for an anti inflammatory for her

> arthritis

> issues. She received an infusion every 4 weeks until about

> May. In

> May they decided to increase her infusions to every 3

> weeks. Maggie

> was spending less and less time in the hospital and for the

> first

> time in 11 years went an entire month without a sinus

> infection. Her

> ulcers would just about heal and for two weeks after her

> IVIg she was

> having only 1 or 2 normal stools a day. Her energy level

> increased a

> little bit and she actually had a feel good all over kind

> of response.

> > In July her Immunologist increased her infusions

> to every

> other week. This way, she doesn't have a week of

> sickness or ulcers

> breaking back open and it is time for another infusion.

> > Before she was diagnosed with PIDD I had no clue

> that

> anything like this ever even existed, other than the movie

> " Bubble

> Boy " . Now I struggle getting family members and

> friends to

> understand.

> > For us, IVIg has given Maggie a chance to live.

> She had spent

> almost 11 years growing up in hospitals. Missing out on

> birthdays and

> holidays and never knowing what it was like to go an entire

> month

> without being sick. Since the end of June Maggie has not

> had any

> infections (other than in her toe because she chose to

> remove an

> ingrown toenail on her own!)

> > We are looking at doing Sub Q Ig in the next few

> months, once

> a week. She is getting 51 grams of Carimmune every other

> week right

> now. She does get a headache but they run the infusion slow

> and with

> normal saline, this has helped with side effects. She also

> takes

> Benedryl and Tylenol before each infusion. To her it is 24

> hours of

> yuck for 14 days of feeling good. Not ever forgetting the

> infections

> she is not getting in between as well.

> > Well enough about us, I just wanted to introduce

> her and I to

> your group. We are looking forward to meeting others who

> like us are

> learning and also those of you who have experience in the

> world of

> PIDD.

> >

> > Thank you,

> >

> > Diane and Maggie age 11(OI,CP,Systemic

> JIA,uveitis, PIDD)

> >

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Posted
Posted

Hi ,

Thanks for the welcome, we are greatful to have met a wonderful person on the

JRA Group who also has a daughter with CVID....who belongs to this group as

well. She told us that you guys were awesome and so helpful with this disease.

I am so greatful to Maggie's Rheumatologist for shipping us to an

Immunologist, I only wish the two of them were in her life at a much earlier

age. Especially now knowing that it was because of the lack of

knowledge that her PIDD exsisted that caused her autoimmune disease. Her

immunologist feel's that this could have been prevented or at least not have

come at such an early age if they would only have known.

At this stage of the game we are just so thankful that the biggest puzzle of

Maggie's health has been found. With everything else that she has, this is by

far the scariest. The rest of her health issues are what they are, no

cure.....but tolerable.(Immune and Autoimmune are taking a toll on her)

Maggie does have a port, she is actually on Port #7. She has lost three to

infection and 4 because of either out growing them or having other

complications. She has had 6 PICC lines placed to compensate inbetween ports.

She is a horrible stick and has had IV's in the strangest places but none of

them will hold for more than 24 hours. Most of them blow immediately. However

she is looking forward to the Sub Q. She loves her nurses, but our insurance

will only cover the infusions of IVIg if she stays for 24 hours......not so much

fun for her, she wants to come home.

She has grown up in hospitals having spent 3 solid months in the spring of

2006 and once again from January- June in 2007 with the exception of two weeks

when we broke out to try and take the kids to Disney World only having to come

home early because she started running temps of 105. (another bloodstream

infection)

Thanks to IVIg the spring of 2008 was spent here, at home! She only goes in

now for infusions over night every other week of IVIg and 4 days every 3 months

for her Pamidronate (for bone density).

I am extremely sad that any child would not have a perfectly working immune

system, but after spending the last 11 years wondering if this was the one

infection that was going to take her from us.....still having no answers why she

did not respond to antibiotics they way she should, or why she was getting these

infections to begin with. I now am just thanking God for guiding Maggie's

doctor's in the right direction so that we can better the Quality of her life.

Even if it means needle pokes and a couple yucky days to help her.

I am glad to hear your son is using the Sub Q. It will be such a great

experience for Maggie to be home inbetween her bone infusions and ONLY need to

go to peds once every 3 months,this will be a whole new life for her and for the

rest of our family as well!

Smiles and Sunshine from Iowa!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis,PIDD)

> From: rfrench496 <bluemtnfarm@...>

> Subject: Re: New to your group! (kind of long)

>

> Date: Monday, August 18, 2008, 12:12 PM

> Hi Diane-what a heartbreaking road you have had. I'm

> sorry for the

> ordeal you're daughter has been through, but am glad to

> hear things

> are looking up for her with treatments and fewer

> infections! It

> sounds as though you have a good team of doctors on your

> side, which

> is more than half the battle!

>

> Mark is 7 and was diagnosed with a PID at 3 months--finally

>

> determined he had CVID at age 2. He has some other anemia

> issues

> too. He was on IVIG from 3 months until 2 weeks ago, when

> we started

> subQ. I think it is much, much better for him as he is an

> extremely

> poor stick with his veins about gone from 7 years of

> countless

> transfusions/labs/IVIG. Also, it keeps their levels more

> constant,

> which it sounds like they are trying to do with your

> daughter.

>

> Best wishes to you,

> mom to Mark 7 CVID

>

> >

> > Hello to Everyone,

> >

> > Just wanted to introduce myself and my

> daughter Maggie to

> your group.

> > My name is Diane and my husbands name is Brad.

> We have 4

> beautiful daughters, Caitlyn age 19, le age 18,

> Allyson age 14

> and Maggie age 11.

> > Maggie was born with a bone disease called

> Osteogenesis

> Imperfecta. She has had hundreds of broken bones in her

> life so far,

> we have been giving her infusions of a med called

> Pamidronate since

> age 4 and she is doing wonderful since. On the average she

> breaks

> about 4 times per year instead of 4 times per month now.

> > She also has CP. She had a Baclofen Pump

> placed in her

> stomach to help with muscle spasticity at age 7 and is

> doing

> wonderful for that now and is even able to walk short

> distances. (up

> to about 30 feet)

> > She has been sick her whole life, ear

> infections, pnemonia

> requiring many hospitalizations for IV meds, sinus

> infections, staph

> infections, kidney infections with bactera such as

> Pseudomonas,

> bloodstream infections, cellulitis, and recently

> Disseminated

> Histoplasmosis (a fungal infection in her bloodstream). But

> it wasn't

> until we almost lost her for the 3rd time last spring and

> she was

> diagnosed with Systemic JIA, that her Rheumatologist

> suggested seeing

> an Immunologist because she was always so sick. At that

> point she

> was 9 years old and for 9 years her doctors blamed all of

> her

> illnesses on the fact that she has OI.(broken bones yes,

> infections....no)

> > Maggie was diagnosed with Primary Immune

> Deficiency last

> April, it has taken her Immunologist months to pinpoint an

> actual

> name because some of her infections have been so huge.

> Finally two

> weeks ago they sent us a letter stating that she falls into

> the

> catagory of CVID,more on the severe end of things, having

> low

> immunoglobulins, low switching B cells, Raging Cytokines,

> autoimmune

> disease which has attacked all of her internal organs as

> well as her

> joints and the list went on. We were told that her Immune

> Deficiency

> was what caused her autoimmune disease.

> > Even while on 40mgs of Prednisone,

> Methotrexate, Celebrex

> for her arthritis she was still having up to 27 stools a

> day and had

> ulcers all over her body on her skin which would not heal

> even after

> months of antibiotics and Hyperbaric Oxygen Therapy.

> > Maggie's doctors started her on IVIg in

> February. In

> February it was more for an anti inflammatory for her

> arthritis

> issues. She received an infusion every 4 weeks until about

> May. In

> May they decided to increase her infusions to every 3

> weeks. Maggie

> was spending less and less time in the hospital and for the

> first

> time in 11 years went an entire month without a sinus

> infection. Her

> ulcers would just about heal and for two weeks after her

> IVIg she was

> having only 1 or 2 normal stools a day. Her energy level

> increased a

> little bit and she actually had a feel good all over kind

> of response.

> > In July her Immunologist increased her infusions

> to every

> other week. This way, she doesn't have a week of

> sickness or ulcers

> breaking back open and it is time for another infusion.

> > Before she was diagnosed with PIDD I had no clue

> that

> anything like this ever even existed, other than the movie

> " Bubble

> Boy " . Now I struggle getting family members and

> friends to

> understand.

> > For us, IVIg has given Maggie a chance to live.

> She had spent

> almost 11 years growing up in hospitals. Missing out on

> birthdays and

> holidays and never knowing what it was like to go an entire

> month

> without being sick. Since the end of June Maggie has not

> had any

> infections (other than in her toe because she chose to

> remove an

> ingrown toenail on her own!)

> > We are looking at doing Sub Q Ig in the next few

> months, once

> a week. She is getting 51 grams of Carimmune every other

> week right

> now. She does get a headache but they run the infusion slow

> and with

> normal saline, this has helped with side effects. She also

> takes

> Benedryl and Tylenol before each infusion. To her it is 24

> hours of

> yuck for 14 days of feeling good. Not ever forgetting the

> infections

> she is not getting in between as well.

> > Well enough about us, I just wanted to introduce

> her and I to

> your group. We are looking forward to meeting others who

> like us are

> learning and also those of you who have experience in the

> world of

> PIDD.

> >

> > Thank you,

> >

> > Diane and Maggie age 11(OI,CP,Systemic

> JIA,uveitis, PIDD)

> >

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Posted
Posted

Hi ,

Well if you can do this with three, I can certainly do this with one!!

Maggie's autoimmune issues aren't quite as scary as the CVID but I will say

she complains that her joints hurt worse than a broken bone. This tells me that

the arthritis issues have to be extremely painful. Because her immune system

attacked her heart, liver, kidneys, thyroid gland, lungs and eyes as well as her

joints neither diagnosis was too pleasent.

We are just glad to finally have a name to put on her illness, I think the

unknown was much scarier than the known!!

My 18 year old has Epilepsy, when your child has a seizure it is also

heartbreaking. She has now 5 years seizure free, without medication so we are

thrilled for her. I think the worst thing about them was that we could never

predict what would set her off.

I am glad to know their infections are better controlled. We are excited to

start Sub Q but a little nervous about how the change will work for her. I guess

you never know until you try and from what I have read so far it seems that

everyone that has tried as had a successful response.

Thanks for the warm welcome! We are just so thankful that there is a group

like this!

It is wonderful to know we are not alone! You are right!!

Smiles and Sunshine from Iowa!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

> From: Fox <mfox50@...>

> Subject: Re: New to your group! (kind of long)

>

> Date: Monday, August 18, 2008, 10:12 PM

> hi Dianne,

>

> Thanks for sharing your story! My 3 boys all have CVID as

> well... although we are somewhere in between mild and

> severe... all three get subQ now and for the most part their

> infections are pretty well controlled. They also have

> auto-immune issues that have shown up in the past year or

> two (that's when our diagnosis changed from hypogamma to

> CVID). Two of our boys have also had seizures, although we

> don't know why.

>

> It's wonderful to hear other stories of how much

> treatment can help quality of life for our kids!

>

> , mom to 3 with CVID: (almost 9),

> (6), Matty (3)

> http://www.teamhope.info/http://foxfamilypidd.bravehost.com/

>

>

>

> EMAILING FOR THE GREATER GOODJoin me

>

>

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Hi Cyndi,

Because Maggie is on a high dose of steroids thanks to her autoimmune disease

and has thyroiditis also because of her autoimmune disease, she has gained a

massive amount of weight over the last year. She went from 84 lbs to 160 lbs.

SO, her IVIg is dosed I think per her body weight which is quite a bit! ( her

weight is a major issue for her, Not such an easy thing to take as an 11 year

old little girl)She is all cheeks and belly, yet still has malnutrition!(Stools

now down from 27 per day to 1 or 2 thank God)

They try to decrease her steroids but always end up failing as her arthritis

is still very active and her organs will even flare along with her joints.

someday....maybe!

So, they infuse over about a 6 hour period. They never go above the rate of

90 and always run normal saline along with it. With the normal saline and the

IVIg together they keep the rate at a steady 150 total, changing the saline rate

as they increase the IVIg.

She used to get horrible migraines and vomit but now does just fine with some

tylenol!

She does however usually run a temp anywhere from 101 - 101.8, it never

really goes above 102. But this they still blame on her Systemic JIA, she will

run a low grade temp daily here at home and still has rashes that come and go.

The interesting thing in all of this is the Ulcers that she has on her skin.

She has them in various places but most of them are on her thighs. They are all

about 5 cm in diameter and scab over about two days after her infusion and then

open back up about 3 days before she is due again. She also gets very tired and

sleeps a lot before she is due for IVIg. We are praying that when we get

everything organized to do her infusions Sub Q that she will not have these

issues and hopefully these ulcers will heal. They are very gross. They are

also starting her on a Cytokine blocker to see if that helps her at all with the

ulcers. It is very frustrating for everyone, but most of all for Maggie!

Thank you for the welcome, we are so glad to have someone who understands this

stuff to talk to!! Believe me, no one else around here has a clue what any of

this stuff means. We only have to travel about an hour to the Childrens Hospital

but her infusions are done here in our town....she is the only peds patient

there with CVID.....EVERYONE is learning fast!!

Hugs From Iowa!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

> From: CYNDITK <cyndi@...>

> Subject: Re: New to your group! (kind of long)

>

> Date: Monday, August 18, 2008, 11:29 PM

> HI Diane,

>

> Wow- 51 grams every other week! How long do your infusions

> take? What

> rate do you guys infuse at?

>

> I am thrilled to hear your daughter is doing so much better

> and is

> starting to have a normal quality of life...Welcome to the

> group.

>

> best,

> Cyndi

>

>

>

>

>

> >

> > Hello to Everyone,

> >

> > Just wanted to introduce myself and my

> daughter Maggie to

> your group.

> > My name is Diane and my husbands name is Brad.

> We have 4

> beautiful daughters, Caitlyn age 19, le age 18,

> Allyson age 14

> and Maggie age 11.

> > Maggie was born with a bone disease called

> Osteogenesis

> Imperfecta. She has had hundreds of broken bones in her

> life so far,

> we have been giving her infusions of a med called

> Pamidronate since

> age 4 and she is doing wonderful since. On the average she

> breaks

> about 4 times per year instead of 4 times per month now.

> > She also has CP. She had a Baclofen Pump

> placed in her

> stomach to help with muscle spasticity at age 7 and is

> doing wonderful

> for that now and is even able to walk short distances. (up

> to about 30

> feet)

> > She has been sick her whole life, ear

> infections, pnemonia

> requiring many hospitalizations for IV meds, sinus

> infections, staph

> infections, kidney infections with bactera such as

> Pseudomonas,

> bloodstream infections, cellulitis, and recently

> Disseminated

> Histoplasmosis (a fungal infection in her bloodstream). But

> it wasn't

> until we almost lost her for the 3rd time last spring and

> she was

> diagnosed with Systemic JIA, that her Rheumatologist

> suggested seeing

> an Immunologist because she was always so sick. At that

> point she was

> 9 years old and for 9 years her doctors blamed all of her

> illnesses on

> the fact that she has OI.(broken bones yes,

> infections....no)

> > Maggie was diagnosed with Primary Immune

> Deficiency last

> April, it has taken her Immunologist months to pinpoint an

> actual name

> because some of her infections have been so huge. Finally

> two weeks

> ago they sent us a letter stating that she falls into the

> catagory of

> CVID,more on the severe end of things, having low

> immunoglobulins, low

> switching B cells, Raging Cytokines, autoimmune disease

> which has

> attacked all of her internal organs as well as her joints

> and the list

> went on. We were told that her Immune Deficiency was what

> caused her

> autoimmune disease.

> > Even while on 40mgs of Prednisone,

> Methotrexate, Celebrex for

> her arthritis she was still having up to 27 stools a day

> and had

> ulcers all over her body on her skin which would not heal

> even after

> months of antibiotics and Hyperbaric Oxygen Therapy.

> > Maggie's doctors started her on IVIg in

> February. In February

> it was more for an anti inflammatory for her arthritis

> issues. She

> received an infusion every 4 weeks until about May. In May

> they

> decided to increase her infusions to every 3 weeks. Maggie

> was

> spending less and less time in the hospital and for the

> first time in

> 11 years went an entire month without a sinus infection.

> Her ulcers

> would just about heal and for two weeks after her IVIg she

> was having

> only 1 or 2 normal stools a day. Her energy level increased

> a little

> bit and she actually had a feel good all over kind of

> response.

> > In July her Immunologist increased her infusions

> to every

> other week. This way, she doesn't have a week of

> sickness or ulcers

> breaking back open and it is time for another infusion.

> > Before she was diagnosed with PIDD I had no clue

> that anything

> like this ever even existed, other than the movie

> " Bubble Boy " . Now I

> struggle getting family members and friends to understand.

>

> > For us, IVIg has given Maggie a chance to live.

> She had spent

> almost 11 years growing up in hospitals. Missing out on

> birthdays and

> holidays and never knowing what it was like to go an entire

> month

> without being sick. Since the end of June Maggie has not

> had any

> infections (other than in her toe because she chose to

> remove an

> ingrown toenail on her own!)

> > We are looking at doing Sub Q Ig in the next few

> months, once

> a week. She is getting 51 grams of Carimmune every other

> week right

> now. She does get a headache but they run the infusion slow

> and with

> normal saline, this has helped with side effects. She also

> takes

> Benedryl and Tylenol before each infusion. To her it is 24

> hours of

> yuck for 14 days of feeling good. Not ever forgetting the

> infections

> she is not getting in between as well.

> > Well enough about us, I just wanted to introduce

> her and I to

> your group. We are looking forward to meeting others who

> like us are

> learning and also those of you who have experience in the

> world of PIDD.

> >

> > Thank you,

> >

> > Diane and Maggie age 11(OI,CP,Systemic

> JIA,uveitis, PIDD)

> >

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Posted
Posted

Sub Q is WONDERFUL !! The level of outside care is minimized and the kids feel

so much more normal. And the levels stay so even without the peaks and troughs

so they stay much healthier.

BARBIE

----- Original Mesissage ----

From: Diane Wiederholt <hockeytough@...>

Sent: Monday, August 18, 2008 5:31:04 PM

Subject: Re: Re: New to your group! (kind of long)

Hi ,

Well if you can do this with three, I can certainly do this with one!!

Maggie's autoimmune issues aren't quite as scary as the CVID but I will say she

complains that her joints hurt worse than a broken bone. This tells me that the

arthritis issues have to be extremely painful. Because her immune system

attacked her heart, liver, kidneys, thyroid gland, lungs and eyes as well as her

joints neither diagnosis was too pleasent.

We are just glad to finally have a name to put on her illness, I think the

unknown was much scarier than the known!!

My 18 year old has Epilepsy, when your child has a seizure it is also

heartbreaking. She has now 5 years seizure free, without medication so we are

thrilled for her. I think the worst thing about them was that we could never

predict what would set her off.

I am glad to know their infections are better controlled. We are excited to

start Sub Q but a little nervous about how the change will work for her. I guess

you never know until you try and from what I have read so far it seems that

everyone that has tried as had a successful response.

Thanks for the warm welcome! We are just so thankful that there is a group like

this!

It is wonderful to know we are not alone! You are right!!

Smiles and Sunshine from Iowa!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

> From: Fox <mfox50hotmail (DOT) com>

> Subject: Re: New to your group! (kind of long)

> groups (DOT) com

> Date: Monday, August 18, 2008, 10:12 PM

> hi Dianne,

>

> Thanks for sharing your story! My 3 boys all have CVID as

> well... although we are somewhere in between mild and

> severe... all three get subQ now and for the most part their

> infections are pretty well controlled. They also have

> auto-immune issues that have shown up in the past year or

> two (that's when our diagnosis changed from hypogamma to

> CVID). Two of our boys have also had seizures, although we

> don't know why.

>

> It's wonderful to hear other stories of how much

> treatment can help quality of life for our kids!

>

> , mom to 3 with CVID: (almost 9),

> (6), Matty (3)

> http://www.teamhope .info/http: //foxfamilypidd. bravehost. com/

>

>

>

> EMAILING FOR THE GREATER GOODJoin me

>

>

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Posted
Posted

Just from what I have seen and know that is a very rapid rate still. It took us

several years to get beyond about 35cc per hour. I would think that infusing

even slower might reduce her side effects even more. At least that is what I

have seen with most cases over the years. It does seem to be a large dose but

the important thing is that it seems to be making a difference and may in time

start to change her overall situation. My son also doubled his wt due to meds

when he was about 6 he went from 45-90 lbs in 6 weeks. He got soooo mad!!! For

some reason he is gaining very rapidly right now. We started a med a couple of

months ago that can cause wt gain and he is very very angry about it. But it is

helping him to feel better.

BARBIE

Re: New to your group! (kind of long)

> groups (DOT) com

> Date: Monday, August 18, 2008, 11:29 PM

> HI Diane,

>

> Wow- 51 grams every other week! How long do your infusions

> take? What

> rate do you guys infuse at?

>

> I am thrilled to hear your daughter is doing so much better

> and is

> starting to have a normal quality of life...Welcome to the

> group.

>

> best,

> Cyndi

>

>

>

>

>

> >

> > Hello to Everyone,

> >

> > Just wanted to introduce myself and my

> daughter Maggie to

> your group.

> > My name is Diane and my husbands name is Brad.

> We have 4

> beautiful daughters, Caitlyn age 19, le age 18,

> Allyson age 14

> and Maggie age 11.

> > Maggie was born with a bone disease called

> Osteogenesis

> Imperfecta. She has had hundreds of broken bones in her

> life so far,

> we have been giving her infusions of a med called

> Pamidronate since

> age 4 and she is doing wonderful since. On the average she

> breaks

> about 4 times per year instead of 4 times per month now.

> > She also has CP. She had a Baclofen Pump

> placed in her

> stomach to help with muscle spasticity at age 7 and is

> doing wonderful

> for that now and is even able to walk short distances. (up

> to about 30

> feet)

> > She has been sick her whole life, ear

> infections, pnemonia

> requiring many hospitalizations for IV meds, sinus

> infections, staph

> infections, kidney infections with bactera such as

> Pseudomonas,

> bloodstream infections, cellulitis, and recently

> Disseminated

> Histoplasmosis (a fungal infection in her bloodstream) . But

> it wasn't

> until we almost lost her for the 3rd time last spring and

> she was

> diagnosed with Systemic JIA, that her Rheumatologist

> suggested seeing

> an Immunologist because she was always so sick. At that

> point she was

> 9 years old and for 9 years her doctors blamed all of her

> illnesses on

> the fact that she has OI.(broken bones yes,

> infections.. ..no)

> > Maggie was diagnosed with Primary Immune

> Deficiency last

> April, it has taken her Immunologist months to pinpoint an

> actual name

> because some of her infections have been so huge. Finally

> two weeks

> ago they sent us a letter stating that she falls into the

> catagory of

> CVID,more on the severe end of things, having low

> immunoglobulins, low

> switching B cells, Raging Cytokines, autoimmune disease

> which has

> attacked all of her internal organs as well as her joints

> and the list

> went on. We were told that her Immune Deficiency was what

> caused her

> autoimmune disease.

> > Even while on 40mgs of Prednisone,

> Methotrexate, Celebrex for

> her arthritis she was still having up to 27 stools a day

> and had

> ulcers all over her body on her skin which would not heal

> even after

> months of antibiotics and Hyperbaric Oxygen Therapy.

> > Maggie's doctors started her on IVIg in

> February. In February

> it was more for an anti inflammatory for her arthritis

> issues. She

> received an infusion every 4 weeks until about May. In May

> they

> decided to increase her infusions to every 3 weeks. Maggie

> was

> spending less and less time in the hospital and for the

> first time in

> 11 years went an entire month without a sinus infection.

> Her ulcers

> would just about heal and for two weeks after her IVIg she

> was having

> only 1 or 2 normal stools a day. Her energy level increased

> a little

> bit and she actually had a feel good all over kind of

> response.

> > In July her Immunologist increased her infusions

> to every

> other week. This way, she doesn't have a week of

> sickness or ulcers

> breaking back open and it is time for another infusion.

> > Before she was diagnosed with PIDD I had no clue

> that anything

> like this ever even existed, other than the movie

> " Bubble Boy " . Now I

> struggle getting family members and friends to understand.

>

> > For us, IVIg has given Maggie a chance to live.

> She had spent

> almost 11 years growing up in hospitals. Missing out on

> birthdays and

> holidays and never knowing what it was like to go an entire

> month

> without being sick. Since the end of June Maggie has not

> had any

> infections (other than in her toe because she chose to

> remove an

> ingrown toenail on her own!)

> > We are looking at doing Sub Q Ig in the next few

> months, once

> a week. She is getting 51 grams of Carimmune every other

> week right

> now. She does get a headache but they run the infusion slow

> and with

> normal saline, this has helped with side effects. She also

> takes

> Benedryl and Tylenol before each infusion. To her it is 24

> hours of

> yuck for 14 days of feeling good. Not ever forgetting the

> infections

> she is not getting in between as well.

> > Well enough about us, I just wanted to introduce

> her and I to

> your group. We are looking forward to meeting others who

> like us are

> learning and also those of you who have experience in the

> world of PIDD.

> >

> > Thank you,

> >

> > Diane and Maggie age 11(OI,CP,Systemic

> JIA,uveitis, PIDD)

> >

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Posted
Posted

Thanks !! Glad to have him here. It has been quite a journey trying to get

good healthcare here in OK. With my background as an OB/Peds/ NICU nurse it has

been hard to sit by and watch them make her high risk with their POOR Quality

care. But after 6 providers we finally were dumped with an INCREDIBLE midwife

over the past month of her pregnancy. It could not have been better in the end.

I KNOW I am going to enjoy being a grandma!! i was not sure I was ready to give

up having more children ( Both of mine are adopted and I wanted another one but

I think I will just enjoy being a grandma. )

BARBIE

New to your group! (kind of long)

> >

> >

> > Hello to Everyone,

> >

> > Just wanted to introduce myself and my daughter Maggie to

> > your group.

> > My name is Diane and my husbands name is Brad. We have 4

> > beautiful daughters, Caitlyn age 19, le age 18,

> > Allyson age 14 and Maggie age 11.

> > Maggie was born with a bone disease called Osteogenesis

> > Imperfecta. She has had hundreds of broken bones in her life

> > so far, we have been giving her infusions of a med called

> > Pamidronate since age 4 and she is doing wonderful since. On

> > the average she breaks about 4 times per year instead of 4

> > times per month now.

> > She also has CP. She had a Baclofen Pump placed in her

> > stomach to help with muscle spasticity at age 7 and is doing

> > wonderful for that now and is even able to walk short

> > distances. (up to about 30 feet)

> > She has been sick her whole life, ear infections, pnemonia

> > requiring many hospitalizations for IV meds, sinus

> > infections, staph infections, kidney infections with bactera

> > such as Pseudomonas, bloodstream infections, cellulitis, and

> > recently Disseminated Histoplasmosis (a fungal infection in

> > her bloodstream) . But it wasn't until we almost lost

> > her for the 3rd time last spring and she was diagnosed with

> > Systemic JIA, that her Rheumatologist suggested seeing an

> > Immunologist because she was always so sick. At that point

> > she was 9 years old and for 9 years her doctors blamed all

> > of her illnesses on the fact that she has OI.(broken bones

> > yes, infections.. ..no)

> > Maggie was diagnosed with Primary Immune Deficiency last

> > April, it has taken her Immunologist months to pinpoint an

> > actual name because some of her infections have been so

> > huge. Finally two weeks ago they sent us a letter stating

> > that she falls into the catagory of CVID,more on the severe

> > end of things, having low immunoglobulins, low switching B

> > cells, Raging Cytokines, autoimmune disease which has

> > attacked all of her internal organs as well as her joints

> > and the list went on. We were told that her Immune

> > Deficiency was what caused her autoimmune disease.

> > Even while on 40mgs of Prednisone, Methotrexate, Celebrex

> > for her arthritis she was still having up to 27 stools a day

> > and had ulcers all over her body on her skin which would not

> > heal even after months of antibiotics and Hyperbaric Oxygen

> > Therapy.

> > Maggie's doctors started her on IVIg in February. In

> > February it was more for an anti inflammatory for her

> > arthritis issues. She received an infusion every 4 weeks

> > until about May. In May they decided to increase her

> > infusions to every 3 weeks. Maggie was spending less and

> > less time in the hospital and for the first time in 11 years

> > went an entire month without a sinus infection. Her ulcers

> > would just about heal and for two weeks after her IVIg she

> > was having only 1 or 2 normal stools a day. Her energy level

> > increased a little bit and she actually had a feel good all

> > over kind of response.

> > In July her Immunologist increased her infusions to every

> > other week. This way, she doesn't have a week of

> > sickness or ulcers breaking back open and it is time for

> > another infusion.

> > Before she was diagnosed with PIDD I had no clue that

> > anything like this ever even existed, other than the movie

> > " Bubble Boy " . Now I struggle getting family

> > members and friends to understand.

> > For us, IVIg has given Maggie a chance to live. She had

> > spent almost 11 years growing up in hospitals. Missing out

> > on birthdays and holidays and never knowing what it was like

> > to go an entire month without being sick. Since the end of

> > June Maggie has not had any infections (other than in her

> > toe because she chose to remove an ingrown toenail on her

> > own!)

> > We are looking at doing Sub Q Ig in the next few months,

> > once a week. She is getting 51 grams of Carimmune every

> > other week right now. She does get a headache but they run

> > the infusion slow and with normal saline, this has helped

> > with side effects. She also takes Benedryl and Tylenol

> > before each infusion. To her it is 24 hours of yuck for 14

> > days of feeling good. Not ever forgetting the infections she

> > is not getting in between as well.

> > Well enough about us, I just wanted to introduce her and I

> > to your group. We are looking forward to meeting others who

> > like us are learning and also those of you who have

> > experience in the world of PIDD.

> >

> > Thank you,

> >

> > Diane and Maggie age 11(OI,CP,Systemic JIA,uveitis, PIDD)

> >

> >

> >

> >

> >

> >

> >

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Posted
Posted

Hi ,

God you are good!! They did test her for CGD, she does have some of the

components from that disease, she also has bits and pieces from about 20

others....scares me to death I will be honest.

All I know is that because she has fragments from a variety of different

PID's they say CVID. Apparently this still could change but this is where she

falls because of the various issues.

The scariest thing that happend was the Disseminated Histoplasmosis that she

got last November. This is a fungal infection in the bloodstream caused by bird

droppings in our soil here in the lovely midwest! She will have to take sporonox

(antibiotics for fungal infection) for the rest of her life. At this point we

still did not know she had PID. Her temps hit 106 and she was the sickest I have

ever seen her. Her liver and spleen were enlarged and she became jaundiced

because of the liver enlargement. As scary as this was, THIS was what made them

send us to an Immunologist. All of the pieces to her immune system are there,

they just do not work or they are extremely low. Her white count has never been

above 4,000 cells unless she is on steroids and she has needed two blood

transfusions that no one really questioned......until she got to the Immunology

Doctor.

They also thought the ulcers were vascullitis but skin biopsy came back

negative for that as well.The tissues are inflammed even while on Methotrexate

and Prednisone for her autoimmune issues.

I do know that her Cytokines are raging, she also is being tested for Lupus,

however she has never had a positive ANA. So unless something changes, we are

riding the CVID train. I don't have a list of all of the PID'S they rattled off

that she had pieces of,but I do remember CGD because that was what they told us

it was at first. I also know they said that she was more severe because of all

of the different things that were going on. This would not have gotten so bad

if they had found this when she was much younger, but it is too late to stress

over that now!

Thank you for sharing the " Red Flag " ! The only thing that I am 100% sure of

right now is that she is responding to IVIg beautifully. From what I understand

most of the PID's would be treated the same way, with the exception of a few.

Her Immunologist keeps in close contact with us and her Primary Care Physician

as well as her Pediatric Rheumatologist. The big name infections that she has

had were things that HIV patients get. We did send her blood to two research

groups at the University of Iowa Hospital, still they say CVID. AMAZING!

Tomorrow is another IVIg infusion day for Maggie. She hates having to spend

the night but our insurance refuses to pay unless she stays for observation. I

guess they are paying for the Immunoglobulins so we just do what we have to, but

she hates it.

Maggie goes back to her Peds Rheumy on the 26th of this month and back to her

Immunologist in September, I am always very interested in what each of them have

to say.....they work in the same childrens hospital,in the same office.

Once again thanks for your input!

Hugs from Iowa!

Diane and Maggie

> From: rfrench496 <bluemtnfarm@...>

> Subject: Re: New to your group! (kind of long)

>

> Date: Tuesday, August 19, 2008, 3:02 AM

> whoops- my bad on the swollen lymph nodes--

>

>

> > > > >

> > > > > Hello to Everyone,

> > > > >

> > > > > Just wanted to introduce myself

> and my

> > > > daughter Maggie to

> > > > your group.

> > > > > My name is Diane and my

> husbands name is Brad.

> > > > We have 4

> > > > beautiful daughters, Caitlyn age 19,

> le age 18,

> > > > Allyson age 14

> > > > and Maggie age 11.

> > > > > Maggie was born with a bone

> disease called

> > > > Osteogenesis

> > > > Imperfecta. She has had hundreds of broken

> bones in her

> > > > life so far,

> > > > we have been giving her infusions of a med

> called

> > > > Pamidronate since

> > > > age 4 and she is doing wonderful since. On

> the average she

> > > > breaks

> > > > about 4 times per year instead of 4 times

> per month now.

> > > > > She also has CP. She had a

> Baclofen Pump

> > > > placed in her

> > > > stomach to help with muscle spasticity at

> age 7 and is

> > > > doing wonderful

> > > > for that now and is even able to walk short

> distances. (up

> > > > to about 30

> > > > feet)

> > > > > She has been sick her whole

> life, ear

> > > > infections, pnemonia

> > > > requiring many hospitalizations for IV meds,

> sinus

> > > > infections, staph

> > > > infections, kidney infections with bactera

> such as

> > > > Pseudomonas,

> > > > bloodstream infections, cellulitis, and

> recently

> > > > Disseminated

> > > > Histoplasmosis (a fungal infection in her

> bloodstream). But

> > > > it wasn't

> > > > until we almost lost her for the 3rd time

> last spring and

> > > > she was

> > > > diagnosed with Systemic JIA, that her

> Rheumatologist

> > > > suggested seeing

> > > > an Immunologist because she was always so

> sick. At that

> > > > point she was

> > > > 9 years old and for 9 years her doctors

> blamed all of her

> > > > illnesses on

> > > > the fact that she has OI.(broken bones yes,

> > > > infections....no)

> > > > > Maggie was diagnosed with

> Primary Immune

> > > > Deficiency last

> > > > April, it has taken her Immunologist months

> to pinpoint an

> > > > actual name

> > > > because some of her infections have been so

> huge. Finally

> > > > two weeks

> > > > ago they sent us a letter stating that she

> falls into the

> > > > catagory of

> > > > CVID,more on the severe end of things,

> having low

> > > > immunoglobulins, low

> > > > switching B cells, Raging Cytokines,

> autoimmune disease

> > > > which has

> > > > attacked all of her internal organs as well

> as her joints

> > > > and the list

> > > > went on. We were told that her Immune

> Deficiency was what

> > > > caused her

> > > > autoimmune disease.

> > > > > Even while on 40mgs of

> Prednisone,

> > > > Methotrexate, Celebrex for

> > > > her arthritis she was still having up to 27

> stools a day

> > > > and had

> > > > ulcers all over her body on her skin which

> would not heal

> > > > even after

> > > > months of antibiotics and Hyperbaric Oxygen

> Therapy.

> > > > > Maggie's doctors started her

> on IVIg in

> > > > February. In February

> > > > it was more for an anti inflammatory for her

> arthritis

> > > > issues. She

> > > > received an infusion every 4 weeks until

> about May. In May

> > > > they

> > > > decided to increase her infusions to every 3

> weeks. Maggie

> > > > was

> > > > spending less and less time in the hospital

> and for the

> > > > first time in

> > > > 11 years went an entire month without a

> sinus infection.

> > > > Her ulcers

> > > > would just about heal and for two weeks

> after her IVIg she

> > > > was having

> > > > only 1 or 2 normal stools a day. Her energy

> level increased

> > > > a little

> > > > bit and she actually had a feel good all

> over kind of

> > > > response.

> > > > > In July her Immunologist

> increased her infusions

> > > > to every

> > > > other week. This way, she doesn't have a

> week of

> > > > sickness or ulcers

> > > > breaking back open and it is time for

> another infusion.

> > > > > Before she was diagnosed with

> PIDD I had no clue

> > > > that anything

> > > > like this ever even existed, other than the

> movie

> > > > " Bubble Boy " . Now I

> > > > struggle getting family members and friends

> to understand.

> > > >

> > > > > For us, IVIg has given Maggie a

> chance to live.

> > > > She had spent

> > > > almost 11 years growing up in hospitals.

> Missing out on

> > > > birthdays and

> > > > holidays and never knowing what it was like

> to go an entire

> > > > month

> > > > without being sick. Since the end of June

> Maggie has not

> > > > had any

> > > > infections (other than in her toe because

> she chose to

> > > > remove an

> > > > ingrown toenail on her own!)

> > > > > We are looking at doing Sub Q Ig

> in the next few

> > > > months, once

> > > > a week. She is getting 51 grams of Carimmune

> every other

> > > > week right

> > > > now. She does get a headache but they run

> the infusion slow

> > > > and with

> > > > normal saline, this has helped with side

> effects. She also

> > > > takes

> > > > Benedryl and Tylenol before each infusion.

> To her it is 24

> > > > hours of

> > > > yuck for 14 days of feeling good. Not ever

> forgetting the

> > > > infections

> > > > she is not getting in between as well.

> > > > > Well enough about us, I just

> wanted to introduce

> > > > her and I to

> > > > your group. We are looking forward to

> meeting others who

> > > > like us are

> > > > learning and also those of you who have

> experience in the

> > > > world of PIDD.

> > > > >

> > > > > Thank you,

> > > > >

> > > > > Diane and Maggie age

> 11(OI,CP,Systemic

> > > > JIA,uveitis, PIDD)

> > > > >

> > >

> >

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Posted
Posted

Diane --

I have read your story, and I've wanted to respond, but my week has been so

hectic!

I just want to say " hats off " to you! And lots of <<<prayers>>> coming your way

from GA!

I have two boys, one with hypogamma and one with possible CVID. We're still in

the diagnosis process and JUST found a Dr who has a bit of sense about him, and

then found out we no longer had insurance so all of our diagnosis stuff was sort

of halted. Your story was very touching, and you seem to have dealt with it with

amazing grace!

I do hope that little Maggie continues to do well on IVIG and I hope you get all

of the answers! I know I feel like now that I've started on our " diagnosis

journey " that I'm getting little pieces to the big puzzle. It seems like every

time we go we find something else out, and it just clicks and I think to myself

" wow ... that makes sense now ... why they had this when they were little, or

why this happened " It's amazing how intricate PIDD's really are, and how many

things are affected, and while so far, we don't know about any auto-immune

diseases for my boys or anything other than the hypogamma and CVID like a lot of

the other moms on here, we have still had a lot to deal with. We've never had

the numerous hospital stays, etc, however, I also think that being in the south,

and having Dr's that just aren't as educated might have played a part in that.

There were several times that I thought my boys should have been hospitalized

b/c they were VERY

sickly, that the Dr's just shrugged us off.

Sounds like you are finally on a path to answers and solutions! I hope that she

continues to thrive on the IVIG and maybe the hospital stay won't be so bad for

her this time!

Thoughts and prayers coming your way!!!

Deska - mom to Phoenix (11 - hypogamma) Jayden (7 - possible CVID)

Re: New to your group! (kind of long)

> groups (DOT) com

> Date: Monday, August 18, 2008, 11:29 PM

> HI Diane,

>

> Wow- 51 grams every other week! How long do your infusions

> take? What

> rate do you guys infuse at?

>

> I am thrilled to hear your daughter is doing so much better

> and is

> starting to have a normal quality of life...Welcome to the

> group.

>

> best,

> Cyndi

>

>

>

>

>

> >

> > Hello to Everyone,

> >

> > Just wanted to introduce myself and my

> daughter Maggie to

> your group.

> > My name is Diane and my husbands name is Brad.

> We have 4

> beautiful daughters, Caitlyn age 19, le age 18,

> Allyson age 14

> and Maggie age 11.

> > Maggie was born with a bone disease called

> Osteogenesis

> Imperfecta. She has had hundreds of broken bones in her

> life so far,

> we have been giving her infusions of a med called

> Pamidronate since

> age 4 and she is doing wonderful since. On the average she

> breaks

> about 4 times per year instead of 4 times per month now.

> > She also has CP. She had a Baclofen Pump

> placed in her

> stomach to help with muscle spasticity at age 7 and is

> doing wonderful

> for that now and is even able to walk short distances. (up

> to about 30

> feet)

> > She has been sick her whole life, ear

> infections, pnemonia

> requiring many hospitalizations for IV meds, sinus

> infections, staph

> infections, kidney infections with bactera such as

> Pseudomonas,

> bloodstream infections, cellulitis, and recently

> Disseminated

> Histoplasmosis (a fungal infection in her bloodstream) . But

> it wasn't

> until we almost lost her for the 3rd time last spring and

> she was

> diagnosed with Systemic JIA, that her Rheumatologist

> suggested seeing

> an Immunologist because she was always so sick. At that

> point she was

> 9 years old and for 9 years her doctors blamed all of her

> illnesses on

> the fact that she has OI.(broken bones yes,

> infections.. ..no)

> > Maggie was diagnosed with Primary Immune

> Deficiency last

> April, it has taken her Immunologist months to pinpoint an

> actual name

> because some of her infections have been so huge. Finally

> two weeks

> ago they sent us a letter stating that she falls into the

> catagory of

> CVID,more on the severe end of things, having low

> immunoglobulins, low

> switching B cells, Raging Cytokines, autoimmune disease

> which has

> attacked all of her internal organs as well as her joints

> and the list

> went on. We were told that her Immune Deficiency was what

> caused her

> autoimmune disease.

> > Even while on 40mgs of Prednisone,

> Methotrexate, Celebrex for

> her arthritis she was still having up to 27 stools a day

> and had

> ulcers all over her body on her skin which would not heal

> even after

> months of antibiotics and Hyperbaric Oxygen Therapy.

> > Maggie's doctors started her on IVIg in

> February. In February

> it was more for an anti inflammatory for her arthritis

> issues. She

> received an infusion every 4 weeks until about May. In May

> they

> decided to increase her infusions to every 3 weeks. Maggie

> was

> spending less and less time in the hospital and for the

> first time in

> 11 years went an entire month without a sinus infection.

> Her ulcers

> would just about heal and for two weeks after her IVIg she

> was having

> only 1 or 2 normal stools a day. Her energy level increased

> a little

> bit and she actually had a feel good all over kind of

> response.

> > In July her Immunologist increased her infusions

> to every

> other week. This way, she doesn't have a week of

> sickness or ulcers

> breaking back open and it is time for another infusion.

> > Before she was diagnosed with PIDD I had no clue

> that anything

> like this ever even existed, other than the movie

> " Bubble Boy " . Now I

> struggle getting family members and friends to understand.

>

> > For us, IVIg has given Maggie a chance to live.

> She had spent

> almost 11 years growing up in hospitals. Missing out on

> birthdays and

> holidays and never knowing what it was like to go an entire

> month

> without being sick. Since the end of June Maggie has not

> had any

> infections (other than in her toe because she chose to

> remove an

> ingrown toenail on her own!)

> > We are looking at doing Sub Q Ig in the next few

> months, once

> a week. She is getting 51 grams of Carimmune every other

> week right

> now. She does get a headache but they run the infusion slow

> and with

> normal saline, this has helped with side effects. She also

> takes

> Benedryl and Tylenol before each infusion. To her it is 24

> hours of

> yuck for 14 days of feeling good. Not ever forgetting the

> infections

> she is not getting in between as well.

> > Well enough about us, I just wanted to introduce

> her and I to

> your group. We are looking forward to meeting others who

> like us are

> learning and also those of you who have experience in the

> world of PIDD.

> >

> > Thank you,

> >

> > Diane and Maggie age 11(OI,CP,Systemic

> JIA,uveitis, PIDD)

> >

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Posted
Posted

Hi Deska,

I also did not realize how complex PIDD is. It seems the more I read

sometimes the more confusing it all gets, Maggie does have wonderful Doctors at

the University of Iowa Childrens Hospital. They work together and to me that

makes a huge difference.

Her Primary Care Doctor lives here in the Quad Cities by us, she has been

there since the day Maggie was born, because Maggie was sick since birth, her

doctor actually held her before I did. (I joke about this a lot to her!) But she

is very supportive. She has 3 boys and calls Maggie her girl. It helps a lot to

know she is a part of Maggie's health team even though she is learning as we

go......Maggie is her only patient with PIDD.She is also her only patient with

OI, she is getting used to the " learn as we go " method, Maggie's bone doctor is

at the Childrens Hospital of Omaha! All of her specialty docs rely heavely on

her to follow through with the things that need to be done from their end. I

thank God every day for her.

I know insurance is a huge issue with this disease. We fight ours with every

infusion. If they can think of a reason not to pay....they will try and come up

with anything. The last time it was coded differently, that was fun.

When we start Sub Q it will come out of our prescription insurance, we have

three seperate, Hospital, outpatient and scripts. My husband has worked for UPS

for 22 years, they have a pretty great insurance but it seems that EVERyTHING is

a fight. We still pay 20% per infusion which is 3,000 every other week! (UGH!)

Lets just say, we have downsized big time in this house, but it has been worth

it.

We have also had horrible experiences with some doctors in the last 11 years.

In fact, before she was diagnosed with an immune deficiency, there was an

infectious disease doctor that tried to tell Maggie's primary doctor that I was

making her sick. " Kids just do NOT get sick this often " he said " The mother must

be doing it! "

Okay if you find arsenic or something in her blood, but Pseudomanas and

Histoplasmosis and Acinetobacter Baumannii, is a little hard to find in a store

or on a street corner for that matter. Her primary Doc chuckeld, but at the

time I was in tears, it was one of the most frustrating times we had and

probably when I was the most angry!My husband wanted to strangle this guy,(which

would have definately solved problems...with him in jail!)

Now as I look back I wish I had let that doctor have a piece of my mind, he

said that right in front of me.....but I guess he too was at a loss for why this

kid could not fight off ANY bacteria or virus, worse yet the one isn't even from

this country. I would have loved to show him the results of her blood tests, but

I guess now it doesn't really matter what he thinks!

I am just thankful it is all behind us and we can focus on what really

matters and that is giving Maggie the best quality of life that we can. There

are a lot of good doctors out there, but we too have met our share of " Not so

greats " .

Well we are off to the peds unit for Maggie's infusion. She likes that they

have wireless internet up there, Grandma bought her a laptop of her very own so

she could keep herself busy during her infusions.

I usually get all of my paperwork done and catch up on Lifetime movies....it

even gets kind of boring for me sometimes! (I don't tell her that though!)

Thanks so much for the welcome, I am so glad not to have to be alone on this

journey!

Diane and Maggie age 10 (OI,CP,POLY JIA,UVEITIS)

>

> > From: CYNDITK <cyndisongaia (DOT) com>

> > Subject: Re: New to your group! (kind of

> long)

> > groups (DOT) com

> > Date: Monday, August 18, 2008, 11:29 PM

> > HI Diane,

> >

> > Wow- 51 grams every other week! How long do your

> infusions

> > take? What

> > rate do you guys infuse at?

> >

> > I am thrilled to hear your daughter is doing so much

> better

> > and is

> > starting to have a normal quality of life...Welcome to

> the

> > group.

> >

> > best,

> > Cyndi

> >

> >

> >

> >

> >

> > >

> > > Hello to Everyone,

> > >

> > > Just wanted to introduce myself and my

> > daughter Maggie to

> > your group.

> > > My name is Diane and my husbands name is

> Brad.

> > We have 4

> > beautiful daughters, Caitlyn age 19, le age 18,

> > Allyson age 14

> > and Maggie age 11.

> > > Maggie was born with a bone disease

> called

> > Osteogenesis

> > Imperfecta. She has had hundreds of broken bones in

> her

> > life so far,

> > we have been giving her infusions of a med called

> > Pamidronate since

> > age 4 and she is doing wonderful since. On the average

> she

> > breaks

> > about 4 times per year instead of 4 times per month

> now.

> > > She also has CP. She had a Baclofen Pump

> > placed in her

> > stomach to help with muscle spasticity at age 7 and is

> > doing wonderful

> > for that now and is even able to walk short distances.

> (up

> > to about 30

> > feet)

> > > She has been sick her whole life, ear

> > infections, pnemonia

> > requiring many hospitalizations for IV meds, sinus

> > infections, staph

> > infections, kidney infections with bactera such as

> > Pseudomonas,

> > bloodstream infections, cellulitis, and recently

> > Disseminated

> > Histoplasmosis (a fungal infection in her bloodstream)

> . But

> > it wasn't

> > until we almost lost her for the 3rd time last spring

> and

> > she was

> > diagnosed with Systemic JIA, that her Rheumatologist

> > suggested seeing

> > an Immunologist because she was always so sick. At

> that

> > point she was

> > 9 years old and for 9 years her doctors blamed all of

> her

> > illnesses on

> > the fact that she has OI.(broken bones yes,

> > infections.. ..no)

> > > Maggie was diagnosed with Primary Immune

> > Deficiency last

> > April, it has taken her Immunologist months to

> pinpoint an

> > actual name

> > because some of her infections have been so huge.

> Finally

> > two weeks

> > ago they sent us a letter stating that she falls into

> the

> > catagory of

> > CVID,more on the severe end of things, having low

> > immunoglobulins, low

> > switching B cells, Raging Cytokines, autoimmune

> disease

> > which has

> > attacked all of her internal organs as well as her

> joints

> > and the list

> > went on. We were told that her Immune Deficiency was

> what

> > caused her

> > autoimmune disease.

> > > Even while on 40mgs of Prednisone,

> > Methotrexate, Celebrex for

> > her arthritis she was still having up to 27 stools a

> day

> > and had

> > ulcers all over her body on her skin which would not

> heal

> > even after

> > months of antibiotics and Hyperbaric Oxygen Therapy.

> > > Maggie's doctors started her on IVIg

> in

> > February. In February

> > it was more for an anti inflammatory for her arthritis

> > issues. She

> > received an infusion every 4 weeks until about May. In

> May

> > they

> > decided to increase her infusions to every 3 weeks.

> Maggie

> > was

> > spending less and less time in the hospital and for

> the

> > first time in

> > 11 years went an entire month without a sinus

> infection.

> > Her ulcers

> > would just about heal and for two weeks after her IVIg

> she

> > was having

> > only 1 or 2 normal stools a day. Her energy level

> increased

> > a little

> > bit and she actually had a feel good all over kind of

> > response.

> > > In July her Immunologist increased her

> infusions

> > to every

> > other week. This way, she doesn't have a week of

> > sickness or ulcers

> > breaking back open and it is time for another

> infusion.

> > > Before she was diagnosed with PIDD I had no

> clue

> > that anything

> > like this ever even existed, other than the movie

> > " Bubble Boy " . Now I

> > struggle getting family members and friends to

> understand.

> >

> > > For us, IVIg has given Maggie a chance to

> live.

> > She had spent

> > almost 11 years growing up in hospitals. Missing out

> on

> > birthdays and

> > holidays and never knowing what it was like to go an

> entire

> > month

> > without being sick. Since the end of June Maggie has

> not

> > had any

> > infections (other than in her toe because she chose to

> > remove an

> > ingrown toenail on her own!)

> > > We are looking at doing Sub Q Ig in the

> next few

> > months, once

> > a week. She is getting 51 grams of Carimmune every

> other

> > week right

> > now. She does get a headache but they run the infusion

> slow

> > and with

> > normal saline, this has helped with side effects. She

> also

> > takes

> > Benedryl and Tylenol before each infusion. To her it

> is 24

> > hours of

> > yuck for 14 days of feeling good. Not ever forgetting

> the

> > infections

> > she is not getting in between as well.

> > > Well enough about us, I just wanted to

> introduce

> > her and I to

> > your group. We are looking forward to meeting others

> who

> > like us are

> > learning and also those of you who have experience in

> the

> > world of PIDD.

> > >

> > > Thank you,

> > >

> > > Diane and Maggie age 11(OI,CP,Systemic

> > JIA,uveitis, PIDD)

> > >

>

>

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Posted
Posted

Have you checked with the state to see if they will give you a secondary

medicare plan of some kind? I live in OK now and there is NOTHING. As a matter

of fact we will lose it next May when my daughter graduates from High School and

then we will have to move somewhere else. WA state has secondary and they will

pick up the copays etc. as do many many states. Beckett Waiver is a

national waiver that helps not based on income as well as a spend down may be

another source of payment. Just check it out. But definitely it is different in

each state.

BARBIE

Re: New to your group! (kind of

> long)

> > groups (DOT) com

> > Date: Monday, August 18, 2008, 11:29 PM

> > HI Diane,

> >

> > Wow- 51 grams every other week! How long do your

> infusions

> > take? What

> > rate do you guys infuse at?

> >

> > I am thrilled to hear your daughter is doing so much

> better

> > and is

> > starting to have a normal quality of life...Welcome to

> the

> > group.

> >

> > best,

> > Cyndi

> >

> >

> >

> >

> >

> > >

> > > Hello to Everyone,

> > >

> > > Just wanted to introduce myself and my

> > daughter Maggie to

> > your group.

> > > My name is Diane and my husbands name is

> Brad.

> > We have 4

> > beautiful daughters, Caitlyn age 19, le age 18,

> > Allyson age 14

> > and Maggie age 11.

> > > Maggie was born with a bone disease

> called

> > Osteogenesis

> > Imperfecta. She has had hundreds of broken bones in

> her

> > life so far,

> > we have been giving her infusions of a med called

> > Pamidronate since

> > age 4 and she is doing wonderful since. On the average

> she

> > breaks

> > about 4 times per year instead of 4 times per month

> now.

> > > She also has CP. She had a Baclofen Pump

> > placed in her

> > stomach to help with muscle spasticity at age 7 and is

> > doing wonderful

> > for that now and is even able to walk short distances.

> (up

> > to about 30

> > feet)

> > > She has been sick her whole life, ear

> > infections, pnemonia

> > requiring many hospitalizations for IV meds, sinus

> > infections, staph

> > infections, kidney infections with bactera such as

> > Pseudomonas,

> > bloodstream infections, cellulitis, and recently

> > Disseminated

> > Histoplasmosis (a fungal infection in her bloodstream)

> . But

> > it wasn't

> > until we almost lost her for the 3rd time last spring

> and

> > she was

> > diagnosed with Systemic JIA, that her Rheumatologist

> > suggested seeing

> > an Immunologist because she was always so sick. At

> that

> > point she was

> > 9 years old and for 9 years her doctors blamed all of

> her

> > illnesses on

> > the fact that she has OI.(broken bones yes,

> > infections.. ..no)

> > > Maggie was diagnosed with Primary Immune

> > Deficiency last

> > April, it has taken her Immunologist months to

> pinpoint an

> > actual name

> > because some of her infections have been so huge.

> Finally

> > two weeks

> > ago they sent us a letter stating that she falls into

> the

> > catagory of

> > CVID,more on the severe end of things, having low

> > immunoglobulins, low

> > switching B cells, Raging Cytokines, autoimmune

> disease

> > which has

> > attacked all of her internal organs as well as her

> joints

> > and the list

> > went on. We were told that her Immune Deficiency was

> what

> > caused her

> > autoimmune disease.

> > > Even while on 40mgs of Prednisone,

> > Methotrexate, Celebrex for

> > her arthritis she was still having up to 27 stools a

> day

> > and had

> > ulcers all over her body on her skin which would not

> heal

> > even after

> > months of antibiotics and Hyperbaric Oxygen Therapy.

> > > Maggie's doctors started her on IVIg

> in

> > February. In February

> > it was more for an anti inflammatory for her arthritis

> > issues. She

> > received an infusion every 4 weeks until about May. In

> May

> > they

> > decided to increase her infusions to every 3 weeks.

> Maggie

> > was

> > spending less and less time in the hospital and for

> the

> > first time in

> > 11 years went an entire month without a sinus

> infection.

> > Her ulcers

> > would just about heal and for two weeks after her IVIg

> she

> > was having

> > only 1 or 2 normal stools a day. Her energy level

> increased

> > a little

> > bit and she actually had a feel good all over kind of

> > response.

> > > In July her Immunologist increased her

> infusions

> > to every

> > other week. This way, she doesn't have a week of

> > sickness or ulcers

> > breaking back open and it is time for another

> infusion.

> > > Before she was diagnosed with PIDD I had no

> clue

> > that anything

> > like this ever even existed, other than the movie

> > " Bubble Boy " . Now I

> > struggle getting family members and friends to

> understand.

> >

> > > For us, IVIg has given Maggie a chance to

> live.

> > She had spent

> > almost 11 years growing up in hospitals. Missing out

> on

> > birthdays and

> > holidays and never knowing what it was like to go an

> entire

> > month

> > without being sick. Since the end of June Maggie has

> not

> > had any

> > infections (other than in her toe because she chose to

> > remove an

> > ingrown toenail on her own!)

> > > We are looking at doing Sub Q Ig in the

> next few

> > months, once

> > a week. She is getting 51 grams of Carimmune every

> other

> > week right

> > now. She does get a headache but they run the infusion

> slow

> > and with

> > normal saline, this has helped with side effects. She

> also

> > takes

> > Benedryl and Tylenol before each infusion. To her it

> is 24

> > hours of

> > yuck for 14 days of feeling good. Not ever forgetting

> the

> > infections

> > she is not getting in between as well.

> > > Well enough about us, I just wanted to

> introduce

> > her and I to

> > your group. We are looking forward to meeting others

> who

> > like us are

> > learning and also those of you who have experience in

> the

> > world of PIDD.

> > >

> > > Thank you,

> > >

> > > Diane and Maggie age 11(OI,CP,Systemic

> > JIA,uveitis, PIDD)

> > >

>

>

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Posted
Posted

Hi, Each state is VERY different. Yes, Wa is in a better position than others.

Here is what I would do. I would apply for Medicaid and have them turn you down.

There is a SCHIP program that is I think 250% of the poverty level for children.

Also I was able to get them to pay my primary insurance premiums and pick up

copays at the time. I am not sure how Beckett is now being worked with in

WA state right now. I was working on things before I left but had not gotten

anywhere at the time. IF I come back it is something I will continue to work on

since I am going to be in the same boat again. The good think in WA is that

there is a spend down program. And basically they look at your income and have

levels that you have to pay based on your income. If you go beyond that amount

then the state will give you insurnance and help you. You also can go back

90days from the time you apply. It is a wonderful Safety net. I would really go

in and apply and see if

you can get someone to help you through the many programs. If you do not find a

person you can work with the first time then go up the ladder then get someone

you can work with. Where are you in WA state? I lived in Bellingham .

BARBIE

Re: New to your group! (kind of

> > long)

> > > groups (DOT) com

> > > Date: Monday, August 18, 2008, 11:29 PM

> > > HI Diane,

> > >

> > > Wow- 51 grams every other week! How long do your

> > infusions

> > > take? What

> > > rate do you guys infuse at?

> > >

> > > I am thrilled to hear your daughter is doing so much

> > better

> > > and is

> > > starting to have a normal quality of life...Welcome to

> > the

> > > group.

> > >

> > > best,

> > > Cyndi

> > >

> > >

> > >

> > >

> > >

> > > >

> > > > Hello to Everyone,

> > > >

> > > > Just wanted to introduce myself and my

> > > daughter Maggie to

> > > your group.

> > > > My name is Diane and my husbands name is

> > Brad.

> > > We have 4

> > > beautiful daughters, Caitlyn age 19, le age 18,

> > > Allyson age 14

> > > and Maggie age 11.

> > > > Maggie was born with a bone disease

> > called

> > > Osteogenesis

> > > Imperfecta. She has had hundreds of broken bones in

> > her

> > > life so far,

> > > we have been giving her infusions of a med called

> > > Pamidronate since

> > > age 4 and she is doing wonderful since. On the average

> > she

> > > breaks

> > > about 4 times per year instead of 4 times per month

> > now.

> > > > She also has CP. She had a Baclofen Pump

> > > placed in her

> > > stomach to help with muscle spasticity at age 7 and is

> > > doing wonderful

> > > for that now and is even able to walk short distances.

> > (up

> > > to about 30

> > > feet)

> > > > She has been sick her whole life, ear

> > > infections, pnemonia

> > > requiring many hospitalizations for IV meds, sinus

> > > infections, staph

> > > infections, kidney infections with bactera such as

> > > Pseudomonas,

> > > bloodstream infections, cellulitis, and recently

> > > Disseminated

> > > Histoplasmosis (a fungal infection in her bloodstream)

> > . But

> > > it wasn't

> > > until we almost lost her for the 3rd time last spring

> > and

> > > she was

> > > diagnosed with Systemic JIA, that her Rheumatologist

> > > suggested seeing

> > > an Immunologist because she was always so sick. At

> > that

> > > point she was

> > > 9 years old and for 9 years her doctors blamed all of

> > her

> > > illnesses on

> > > the fact that she has OI.(broken bones yes,

> > > infections.. ..no)

> > > > Maggie was diagnosed with Primary Immune

> > > Deficiency last

> > > April, it has taken her Immunologist months to

> > pinpoint an

> > > actual name

> > > because some of her infections have been so huge.

> > Finally

> > > two weeks

> > > ago they sent us a letter stating that she falls into

> > the

> > > catagory of

> > > CVID,more on the severe end of things, having low

> > > immunoglobulins, low

> > > switching B cells, Raging Cytokines, autoimmune

> > disease

> > > which has

> > > attacked all of her internal organs as well as her

> > joints

> > > and the list

> > > went on. We were told that her Immune Deficiency was

> > what

> > > caused her

> > > autoimmune disease.

> > > > Even while on 40mgs of Prednisone,

> > > Methotrexate, Celebrex for

> > > her arthritis she was still having up to 27 stools a

> > day

> > > and had

> > > ulcers all over her body on her skin which would not

> > heal

> > > even after

> > > months of antibiotics and Hyperbaric Oxygen Therapy.

> > > > Maggie's doctors started her on IVIg

> > in

> > > February. In February

> > > it was more for an anti inflammatory for her arthritis

> > > issues. She

> > > received an infusion every 4 weeks until about May. In

> > May

> > > they

> > > decided to increase her infusions to every 3 weeks.

> > Maggie

> > > was

> > > spending less and less time in the hospital and for

> > the

> > > first time in

> > > 11 years went an entire month without a sinus

> > infection.

> > > Her ulcers

> > > would just about heal and for two weeks after her IVIg

> > she

> > > was having

> > > only 1 or 2 normal stools a day. Her energy level

> > increased

> > > a little

> > > bit and she actually had a feel good all over kind of

> > > response.

> > > > In July her Immunologist increased her

> > infusions

> > > to every

> > > other week. This way, she doesn't have a week of

> > > sickness or ulcers

> > > breaking back open and it is time for another

> > infusion.

> > > > Before she was diagnosed with PIDD I had no

> > clue

> > > that anything

> > > like this ever even existed, other than the movie

> > > " Bubble Boy " . Now I

> > > struggle getting family members and friends to

> > understand.

> > >

> > > > For us, IVIg has given Maggie a chance to

> > live.

> > > She had spent

> > > almost 11 years growing up in hospitals. Missing out

> > on

> > > birthdays and

> > > holidays and never knowing what it was like to go an

> > entire

> > > month

> > > without being sick. Since the end of June Maggie has

> > not

> > > had any

> > > infections (other than in her toe because she chose to

> > > remove an

> > > ingrown toenail on her own!)

> > > > We are looking at doing Sub Q Ig in the

> > next few

> > > months, once

> > > a week. She is getting 51 grams of Carimmune every

> > other

> > > week right

> > > now. She does get a headache but they run the infusion

> > slow

> > > and with

> > > normal saline, this has helped with side effects. She

> > also

> > > takes

> > > Benedryl and Tylenol before each infusion. To her it

> > is 24

> > > hours of

> > > yuck for 14 days of feeling good. Not ever forgetting

> > the

> > > infections

> > > she is not getting in between as well.

> > > > Well enough about us, I just wanted to

> > introduce

> > > her and I to

> > > your group. We are looking forward to meeting others

> > who

> > > like us are

> > > learning and also those of you who have experience in

> > the

> > > world of PIDD.

> > > >

> > > > Thank you,

> > > >

> > > > Diane and Maggie age 11(OI,CP,Systemic

> > > JIA,uveitis, PIDD)

> > > >

> >

> >

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Posted
Posted

He was actually 2 days late. They thought he was losing wt so they broke her

water but he was fine. He was 6lbs 12 oz and his name is Ryder Clayton ph.

AND YES he is perfect. He looks just like she did when she was born. She is 1/2

Mexican and beautiful in my eyes. We went in today and he has gained passed his

birth wt. by 3oz at 5days old and she is exclusively nursing. i am so proud of

her commitment and hard work to give him the best in life. Being that I have

worked worked in Peds/OB and NICU the last 20 years I guess she comes by it

naturally. Thanks everyone for the well wishes !! Yes she is young but I think

she has done what she really wanted in life. i think it would have been easier

as does she if she had waited but we are making the best of it. and the father

is very involved and taking responsibility. I have suggested that they not get

married until they are sure which is really hard but I want them to not do just

because she got

pregnant.

BARBIE

New to your group! (kind of long)

> >

> >

> > Hello to Everyone,

> >

> > Just wanted to introduce myself and my daughter Maggie to

> > your group.

> > My name is Diane and my husbands name is Brad. We have 4

> > beautiful daughters, Caitlyn age 19, le age 18,

> > Allyson age 14 and Maggie age 11.

> > Maggie was born with a bone disease called Osteogenesis

> > Imperfecta. She has had hundreds of broken bones in her life

> > so far, we have been giving her infusions of a med called

> > Pamidronate since age 4 and she is doing wonderful since. On

> > the average she breaks about 4 times per year instead of 4

> > times per month now.

> > She also has CP. She had a Baclofen Pump placed in her

> > stomach to help with muscle spasticity at age 7 and is doing

> > wonderful for that now and is even able to walk short

> > distances. (up to about 30 feet)

> > She has been sick her whole life, ear infections, pnemonia

> > requiring many hospitalizations for IV meds, sinus

> > infections, staph infections, kidney infections with bactera

> > such as Pseudomonas, bloodstream infections, cellulitis, and

> > recently Disseminated Histoplasmosis (a fungal infection in

> > her bloodstream) . But it wasn't until we almost lost

> > her for the 3rd time last spring and she was diagnosed with

> > Systemic JIA, that her Rheumatologist suggested seeing an

> > Immunologist because she was always so sick. At that point

> > she was 9 years old and for 9 years her doctors blamed all

> > of her illnesses on the fact that she has OI.(broken bones

> > yes, infections.. ..no)

> > Maggie was diagnosed with Primary Immune Deficiency last

> > April, it has taken her Immunologist months to pinpoint an

> > actual name because some of her infections have been so

> > huge. Finally two weeks ago they sent us a letter stating

> > that she falls into the catagory of CVID,more on the severe

> > end of things, having low immunoglobulins, low switching B

> > cells, Raging Cytokines, autoimmune disease which has

> > attacked all of her internal organs as well as her joints

> > and the list went on. We were told that her Immune

> > Deficiency was what caused her autoimmune disease.

> > Even while on 40mgs of Prednisone, Methotrexate, Celebrex

> > for her arthritis she was still having up to 27 stools a day

> > and had ulcers all over her body on her skin which would not

> > heal even after months of antibiotics and Hyperbaric Oxygen

> > Therapy.

> > Maggie's doctors started her on IVIg in February. In

> > February it was more for an anti inflammatory for her

> > arthritis issues. She received an infusion every 4 weeks

> > until about May. In May they decided to increase her

> > infusions to every 3 weeks. Maggie was spending less and

> > less time in the hospital and for the first time in 11 years

> > went an entire month without a sinus infection. Her ulcers

> > would just about heal and for two weeks after her IVIg she

> > was having only 1 or 2 normal stools a day. Her energy level

> > increased a little bit and she actually had a feel good all

> > over kind of response.

> > In July her Immunologist increased her infusions to every

> > other week. This way, she doesn't have a week of

> > sickness or ulcers breaking back open and it is time for

> > another infusion.

> > Before she was diagnosed with PIDD I had no clue that

> > anything like this ever even existed, other than the movie

> > " Bubble Boy " . Now I struggle getting family

> > members and friends to understand.

> > For us, IVIg has given Maggie a chance to live. She had

> > spent almost 11 years growing up in hospitals. Missing out

> > on birthdays and holidays and never knowing what it was like

> > to go an entire month without being sick. Since the end of

> > June Maggie has not had any infections (other than in her

> > toe because she chose to remove an ingrown toenail on her

> > own!)

> > We are looking at doing Sub Q Ig in the next few months,

> > once a week. She is getting 51 grams of Carimmune every

> > other week right now. She does get a headache but they run

> > the infusion slow and with normal saline, this has helped

> > with side effects. She also takes Benedryl and Tylenol

> > before each infusion. To her it is 24 hours of yuck for 14

> > days of feeling good. Not ever forgetting the infections she

> > is not getting in between as well.

> > Well enough about us, I just wanted to introduce her and I

> > to your group. We are looking forward to meeting others who

> > like us are learning and also those of you who have

> > experience in the world of PIDD.

> >

> > Thank you,

> >

> > Diane and Maggie age 11(OI,CP,Systemic JIA,uveitis, PIDD)

> >

> >

> >

> >

> >

> >

> >

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Hi Barbie,

 

       The state of Iowa has something called the Ill and Handicapped Waiver.

The Waiver part of that waves the parents income and everything is based only on

the child.

       This entitles Maggie to Medicaid insurance and also to nursing or respite

care. Maggie's respite care providers take and do things with her so that my

husband and I can do things with our other children or just take time to

breathe!!

      The insurance part of this (medicaid) doesn't really pay for a whole lot

of insurance " Stuff " because we already have other insurance, if they don't

cover things usually medicaid won't either.

     But here is something really wonderful the State of Iowa did recently which

was one of the smartest things they have ever done.

     We have been on the Waiver program since Maggie was about 3 because of her

other illnesses. We used to go through an agency that would hire workers for us

and they would be paid out of the money that Iowa allows for they handicapped

child. (for instance Maggie is considered pediatric skilled which is the highest

level of care) Maggie receives 2,300 dollars each month that would go to the

agency. The agency would then take 20 dollars for every hour that a respite

worker worked for Maggie, give the respite person 8 and they would keep 12.

Hmmmmm they were not even the ones doing the work, but this is how things were.

     Just recently they came up with a program where the money from the state

goes into a bank account through a certain bank. A broker (through DHS) helps us

budget and hire our own Respite people for Maggie, we decide how much money per

hour we would like to pay them and how many hours per month we would like their

care. If there is any money left over, Maggie can use it for things that would

make her life more comfortable......a  chair that lifts to stand position, a new

mattress for her bed, wheelchair lifts,ramps etc. We cannot use this for

entertainment purposes, clothes or doctor stuff. It was a wonderful idea, we

just switched over to that program, so I hope it works as slick as what they

told us it would, so far so good..

     When she depletes our private insurance through my husbands job, I am

praying the medicaid will kick in better. Her IVIg comes out of our hospital

insurance right now and they pay 80%. Once we do the Sub Q our prescription

insurance will pick that up at 100% (or so we are told) and there is not a cap

on that insurance. Maggie's other meds for the rest of her illnesses total 7,000

dollars a month alone!! They never bat an eye, they just pay the bill. (I know

this is unreal!)

   Maggie has a baclofen pump in her stomach for spasticity, those meds are

injected into her stomach every other month at 2,000 dollars. Because this is

injected in the neurosurgeons office...once again they only cover it at 80%.

(too bad I can't do that one Sub Q....but it has to go into the thecal fluid in

her spine)

  

      What does your son think of his new little nephew? 

      Now he is an Uncle!! That is a pretty big and important job for him!!

   

     Smiles and Sunshine from Iowa!

 

     Diane and Maggie age 11 (OI,CP, Systemic JIA, Uveitis, PIDD)

>

> > From: CYNDITK <cyndisongaia (DOT) com>

> > Subject: Re: New to your group! (kind of

> long)

> > groups (DOT) com

> > Date: Monday, August 18, 2008, 11:29 PM

> > HI Diane,

> >

> > Wow- 51 grams every other week! How long do your

> infusions

> > take? What

> > rate do you guys infuse at?

> >

> > I am thrilled to hear your daughter is doing so much

> better

> > and is

> > starting to have a normal quality of life...Welcome to

> the

> > group.

> >

> > best,

> > Cyndi

> >

> >

> >

> >

> >

> > >

> > > Hello to Everyone,

> > >

> > > Just wanted to introduce myself and my

> > daughter Maggie to

> > your group.

> > > My name is Diane and my husbands name is

> Brad.

> > We have 4

> > beautiful daughters, Caitlyn age 19, le age 18,

> > Allyson age 14

> > and Maggie age 11.

> > > Maggie was born with a bone disease

> called

> > Osteogenesis

> > Imperfecta. She has had hundreds of broken bones in

> her

> > life so far,

> > we have been giving her infusions of a med called

> > Pamidronate since

> > age 4 and she is doing wonderful since. On the average

> she

> > breaks

> > about 4 times per year instead of 4 times per month

> now.

> > > She also has CP. She had a Baclofen Pump

> > placed in her

> > stomach to help with muscle spasticity at age 7 and is

> > doing wonderful

> > for that now and is even able to walk short distances.

> (up

> > to about 30

> > feet)

> > > She has been sick her whole life, ear

> > infections, pnemonia

> > requiring many hospitalizations for IV meds, sinus

> > infections, staph

> > infections, kidney infections with bactera such as

> > Pseudomonas,

> > bloodstream infections, cellulitis, and recently

> > Disseminated

> > Histoplasmosis (a fungal infection in her bloodstream)

> . But

> > it wasn't

> > until we almost lost her for the 3rd time last spring

> and

> > she was

> > diagnosed with Systemic JIA, that her Rheumatologist

> > suggested seeing

> > an Immunologist because she was always so sick. At

> that

> > point she was

> > 9 years old and for 9 years her doctors blamed all of

> her

> > illnesses on

> > the fact that she has OI.(broken bones yes,

> > infections.. ..no)

> > > Maggie was diagnosed with Primary Immune

> > Deficiency last

> > April, it has taken her Immunologist months to

> pinpoint an

> > actual name

> > because some of her infections have been so huge.

> Finally

> > two weeks

> > ago they sent us a letter stating that she falls into

> the

> > catagory of

> > CVID,more on the severe end of things, having low

> > immunoglobulins, low

> > switching B cells, Raging Cytokines, autoimmune

> disease

> > which has

> > attacked all of her internal organs as well as her

> joints

> > and the list

> > went on. We were told that her Immune Deficiency was

> what

> > caused her

> > autoimmune disease.

> > > Even while on 40mgs of Prednisone,

> > Methotrexate, Celebrex for

> > her arthritis she was still having up to 27 stools a

> day

> > and had

> > ulcers all over her body on her skin which would not

> heal

> > even after

> > months of antibiotics and Hyperbaric Oxygen Therapy.

> > > Maggie's doctors started her on IVIg

> in

> > February. In February

> > it was more for an anti inflammatory for her arthritis

> > issues. She

> > received an infusion every 4 weeks until about May. In

> May

> > they

> > decided to increase her infusions to every 3 weeks.

> Maggie

> > was

> > spending less and less time in the hospital and for

> the

> > first time in

> > 11 years went an entire month without a sinus

> infection.

> > Her ulcers

> > would just about heal and for two weeks after her IVIg

> she

> > was having

> > only 1 or 2 normal stools a day. Her energy level

> increased

> > a little

> > bit and she actually had a feel good all over kind of

> > response.

> > > In July her Immunologist increased her

> infusions

> > to every

> > other week. This way, she doesn't have a week of

> > sickness or ulcers

> > breaking back open and it is time for another

> infusion.

> > > Before she was diagnosed with PIDD I had no

> clue

> > that anything

> > like this ever even existed, other than the movie

> > " Bubble Boy " . Now I

> > struggle getting family members and friends to

> understand.

> >

> > > For us, IVIg has given Maggie a chance to

> live.

> > She had spent

> > almost 11 years growing up in hospitals. Missing out

> on

> > birthdays and

> > holidays and never knowing what it was like to go an

> entire

> > month

> > without being sick. Since the end of June Maggie has

> not

> > had any

> > infections (other than in her toe because she chose to

> > remove an

> > ingrown toenail on her own!)

> > > We are looking at doing Sub Q Ig in the

> next few

> > months, once

> > a week. She is getting 51 grams of Carimmune every

> other

> > week right

> > now. She does get a headache but they run the infusion

> slow

> > and with

> > normal saline, this has helped with side effects. She

> also

> > takes

> > Benedryl and Tylenol before each infusion. To her it

> is 24

> > hours of

> > yuck for 14 days of feeling good. Not ever forgetting

> the

> > infections

> > she is not getting in between as well.

> > > Well enough about us, I just wanted to

> introduce

> > her and I to

> > your group. We are looking forward to meeting others

> who

> > like us are

> > learning and also those of you who have experience in

> the

> > world of PIDD.

> > >

> > > Thank you,

> > >

> > > Diane and Maggie age 11(OI,CP,Systemic

> > JIA,uveitis, PIDD)

> > >

>

>

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Posted
Posted

Have you checked on a spend down program? it basically is when you reach a

certain amount with your private insurance out of pocket expenses then the state

picks up the difference. It depends on the state. Here in OK they pay nothing

and there are no spend down programs and Lucas has bills too high to qualify for

the TEFRA or waiver program. With his Gammaglobulin and his mental health meds

and therapy not including any hospitalization or surgeries/procedures he runs

about $5k per mo. So I understand. Mental health is our biggest effort right

now. He is bipolar and has had a great of suicide ideation since he was really

little say about 3. It is so sad to hear plus lots of other behavioral issues.

But because he has a high IQ there is not help in that realm either. I would

love to try to get Dr. Phil or Oprah to do a program on this take on life. Which

is the COSTs to families for kids with special needs. Less than 20% of marriages

last under the

circumstances. Sad there are so many single moms out there raising kids alone

especially with mental illness. I find it much easier to do it alone than to add

someone who is not committed to what it takes to give them a stable home.

BARBIE

Re: New to your group! (kind of

> long)

> > groups (DOT) com

> > Date: Monday, August 18, 2008, 11:29 PM

> > HI Diane,

> >

> > Wow- 51 grams every other week! How long do your

> infusions

> > take? What

> > rate do you guys infuse at?

> >

> > I am thrilled to hear your daughter is doing so much

> better

> > and is

> > starting to have a normal quality of life...Welcome to

> the

> > group.

> >

> > best,

> > Cyndi

> >

> >

> >

> >

> >

> > >

> > > Hello to Everyone,

> > >

> > > Just wanted to introduce myself and my

> > daughter Maggie to

> > your group.

> > > My name is Diane and my husbands name is

> Brad.

> > We have 4

> > beautiful daughters, Caitlyn age 19, le age 18,

> > Allyson age 14

> > and Maggie age 11.

> > > Maggie was born with a bone disease

> called

> > Osteogenesis

> > Imperfecta. She has had hundreds of broken bones in

> her

> > life so far,

> > we have been giving her infusions of a med called

> > Pamidronate since

> > age 4 and she is doing wonderful since. On the average

> she

> > breaks

> > about 4 times per year instead of 4 times per month

> now.

> > > She also has CP. She had a Baclofen Pump

> > placed in her

> > stomach to help with muscle spasticity at age 7 and is

> > doing wonderful

> > for that now and is even able to walk short distances.

> (up

> > to about 30

> > feet)

> > > She has been sick her whole life, ear

> > infections, pnemonia

> > requiring many hospitalizations for IV meds, sinus

> > infections, staph

> > infections, kidney infections with bactera such as

> > Pseudomonas,

> > bloodstream infections, cellulitis, and recently

> > Disseminated

> > Histoplasmosis (a fungal infection in her bloodstream)

> . But

> > it wasn't

> > until we almost lost her for the 3rd time last spring

> and

> > she was

> > diagnosed with Systemic JIA, that her Rheumatologist

> > suggested seeing

> > an Immunologist because she was always so sick. At

> that

> > point she was

> > 9 years old and for 9 years her doctors blamed all of

> her

> > illnesses on

> > the fact that she has OI.(broken bones yes,

> > infections.. ..no)

> > > Maggie was diagnosed with Primary Immune

> > Deficiency last

> > April, it has taken her Immunologist months to

> pinpoint an

> > actual name

> > because some of her infections have been so huge.

> Finally

> > two weeks

> > ago they sent us a letter stating that she falls into

> the

> > catagory of

> > CVID,more on the severe end of things, having low

> > immunoglobulins, low

> > switching B cells, Raging Cytokines, autoimmune

> disease

> > which has

> > attacked all of her internal organs as well as her

> joints

> > and the list

> > went on. We were told that her Immune Deficiency was

> what

> > caused her

> > autoimmune disease.

> > > Even while on 40mgs of Prednisone,

> > Methotrexate, Celebrex for

> > her arthritis she was still having up to 27 stools a

> day

> > and had

> > ulcers all over her body on her skin which would not

> heal

> > even after

> > months of antibiotics and Hyperbaric Oxygen Therapy.

> > > Maggie's doctors started her on IVIg

> in

> > February. In February

> > it was more for an anti inflammatory for her arthritis

> > issues. She

> > received an infusion every 4 weeks until about May. In

> May

> > they

> > decided to increase her infusions to every 3 weeks.

> Maggie

> > was

> > spending less and less time in the hospital and for

> the

> > first time in

> > 11 years went an entire month without a sinus

> infection.

> > Her ulcers

> > would just about heal and for two weeks after her IVIg

> she

> > was having

> > only 1 or 2 normal stools a day. Her energy level

> increased

> > a little

> > bit and she actually had a feel good all over kind of

> > response.

> > > In July her Immunologist increased her

> infusions

> > to every

> > other week. This way, she doesn't have a week of

> > sickness or ulcers

> > breaking back open and it is time for another

> infusion.

> > > Before she was diagnosed with PIDD I had no

> clue

> > that anything

> > like this ever even existed, other than the movie

> > " Bubble Boy " . Now I

> > struggle getting family members and friends to

> understand.

> >

> > > For us, IVIg has given Maggie a chance to

> live.

> > She had spent

> > almost 11 years growing up in hospitals. Missing out

> on

> > birthdays and

> > holidays and never knowing what it was like to go an

> entire

> > month

> > without being sick. Since the end of June Maggie has

> not

> > had any

> > infections (other than in her toe because she chose to

> > remove an

> > ingrown toenail on her own!)

> > > We are looking at doing Sub Q Ig in the

> next few

> > months, once

> > a week. She is getting 51 grams of Carimmune every

> other

> > week right

> > now. She does get a headache but they run the infusion

> slow

> > and with

> > normal saline, this has helped with side effects. She

> also

> > takes

> > Benedryl and Tylenol before each infusion. To her it

> is 24

> > hours of

> > yuck for 14 days of feeling good. Not ever forgetting

> the

> > infections

> > she is not getting in between as well.

> > > Well enough about us, I just wanted to

> introduce

> > her and I to

> > your group. We are looking forward to meeting others

> who

> > like us are

> > learning and also those of you who have experience in

> the

> > world of PIDD.

> > >

> > > Thank you,

> > >

> > > Diane and Maggie age 11(OI,CP,Systemic

> > JIA,uveitis, PIDD)

> > >

>

>

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Posted
Posted

Hi Barbie,

     To be honest I am guessing I put up with a lot more than most would with

Maggie's dad.

      He is a good provider but because he works 3 jobs he is also never home.

When he doesn't have to work on the weekends.....he hunts.

     He can tell you that she takes meds at three different times in one day,

but he could never tell you what they were.

    In fact last week he drove through Walgreens to pick up her meds to save me

a trip into town, and could not remember her birthday.

   On our trip to St. Louis he and his friend and Maggie and her nurse went to a

Cardinal game while my 14 year old and I went shopping, Maggie's nurse had her

own car so she took off right after the game and my husband stood in the parking

lot for 30 minutes trying to get her wheelchair into the car. (she has been in a

wheelchair since age 3)His friend finally figured it out and then he was able to

drive straight to me so I could give her the meds she was supposed to take

before bed. The wheelchair is much bigger now, but breaks down the same way that

most wheelchairs do.

   If I need someone to watch her, I leave her with her oldest sister who can do

it ALL just the way I can, or her nurse/respite care person.

   He is a great dad and he loves the girls, he would do anything for anyone, he

is also extremely intelligent, he just cannot grasp the fact that Maggie is sick

and he HATES hospitals.

   I started nursing school when I was fresh out of highschool, finished after I

had my first two kids. I have never worked outside of my own home as a nurse,

other then taking care of my father who passed away from colon cancer two years

ago.

  I do think God knew what he was doing when he placed Maggie into our lives,

but I sometimes feel that it would have been nice for God to give Maggie's dad a

little tap on the back of the head at the same time, so he could step up to the

plate better.

  I also realize that everyone handles stress differently, and watching someone

you love be in pain or be sick is not an easy job. I think her dad just does the

best that he can under the circumstances, I think if he was home more though he

would be forced to do more with her healthcare then what he does. We are very

lucky to have a wonderful support system with friends and family, that in itself

has saved our entire family unit.

  I cannot imagine dealing with mental illness. I cannot tell you that I

understand, I know just with ADHD with my 14 year old, it is a constant struggle

to even just get her dressed in the morning, by the end of the day she exausts

me. Her wheels are always turning.  She is a beautiful little girl but she wears

people out quickly, in fact I spend a lot of time in the principles

office...this is where her dad does step in, we take turns!  He does the field

trips for school so that she can go, otherwise she would have to stay at school

because usually her behavior demands a lot of one on one and the school does not

provide that for her. Our school system has done away with Para Educators, the

kids are all mainstreamed. (not so great!) Maggie does home instruction.

   I cannot begin to imagine what your days are like, you are right though, I

have never seen anyone talk about these issues on TV. In fact it wasn't until

Maggie was diagnosed that I even knew it exsisted other than in the movie The

Bubble Boy.

  For some reason, if it is not Cancer or Leukemia (not that I take those

lightly either) it just doesn't seem to exist.  If you were to say those to

someone, their eyes well up with tears, PIDD? what's that?

  Please know that you and your family are in our prayers.

   Diane and Maggie

>

> > From: CYNDITK <cyndisongaia (DOT) com>

> > Subject: Re: New to your group! (kind of

> long)

> > groups (DOT) com

> > Date: Monday, August 18, 2008, 11:29 PM

> > HI Diane,

> >

> > Wow- 51 grams every other week! How long do your

> infusions

> > take? What

> > rate do you guys infuse at?

> >

> > I am thrilled to hear your daughter is doing so much

> better

> > and is

> > starting to have a normal quality of life...Welcome to

> the

> > group.

> >

> > best,

> > Cyndi

> >

> >

> >

> >

> >

> > >

> > > Hello to Everyone,

> > >

> > > Just wanted to introduce myself and my

> > daughter Maggie to

> > your group.

> > > My name is Diane and my husbands name is

> Brad.

> > We have 4

> > beautiful daughters, Caitlyn age 19, le age 18,

> > Allyson age 14

> > and Maggie age 11.

> > > Maggie was born with a bone disease

> called

> > Osteogenesis

> > Imperfecta. She has had hundreds of broken bones in

> her

> > life so far,

> > we have been giving her infusions of a med called

> > Pamidronate since

> > age 4 and she is doing wonderful since. On the average

> she

> > breaks

> > about 4 times per year instead of 4 times per month

> now.

> > > She also has CP. She had a Baclofen Pump

> > placed in her

> > stomach to help with muscle spasticity at age 7 and is

> > doing wonderful

> > for that now and is even able to walk short distances.

> (up

> > to about 30

> > feet)

> > > She has been sick her whole life, ear

> > infections, pnemonia

> > requiring many hospitalizations for IV meds, sinus

> > infections, staph

> > infections, kidney infections with bactera such as

> > Pseudomonas,

> > bloodstream infections, cellulitis, and recently

> > Disseminated

> > Histoplasmosis (a fungal infection in her bloodstream)

> . But

> > it wasn't

> > until we almost lost her for the 3rd time last spring

> and

> > she was

> > diagnosed with Systemic JIA, that her Rheumatologist

> > suggested seeing

> > an Immunologist because she was always so sick. At

> that

> > point she was

> > 9 years old and for 9 years her doctors blamed all of

> her

> > illnesses on

> > the fact that she has OI.(broken bones yes,

> > infections.. ..no)

> > > Maggie was diagnosed with Primary Immune

> > Deficiency last

> > April, it has taken her Immunologist months to

> pinpoint an

> > actual name

> > because some of her infections have been so huge.

> Finally

> > two weeks

> > ago they sent us a letter stating that she falls into

> the

> > catagory of

> > CVID,more on the severe end of things, having low

> > immunoglobulins, low

> > switching B cells, Raging Cytokines, autoimmune

> disease

> > which has

> > attacked all of her internal organs as well as her

> joints

> > and the list

> > went on. We were told that her Immune Deficiency was

> what

> > caused her

> > autoimmune disease.

> > > Even while on 40mgs of Prednisone,

> > Methotrexate, Celebrex for

> > her arthritis she was still having up to 27 stools a

> day

> > and had

> > ulcers all over her body on her skin which would not

> heal

> > even after

> > months of antibiotics and Hyperbaric Oxygen Therapy.

> > > Maggie's doctors started her on IVIg

> in

> > February. In February

> > it was more for an anti inflammatory for her arthritis

> > issues. She

> > received an infusion every 4 weeks until about May. In

> May

> > they

> > decided to increase her infusions to every 3 weeks.

> Maggie

> > was

> > spending less and less time in the hospital and for

> the

> > first time in

> > 11 years went an entire month without a sinus

> infection.

> > Her ulcers

> > would just about heal and for two weeks after her IVIg

> she

> > was having

> > only 1 or 2 normal stools a day. Her energy level

> increased

> > a little

> > bit and she actually had a feel good all over kind of

> > response.

> > > In July her Immunologist increased her

> infusions

> > to every

> > other week. This way, she doesn't have a week of

> > sickness or ulcers

> > breaking back open and it is time for another

> infusion.

> > > Before she was diagnosed with PIDD I had no

> clue

> > that anything

> > like this ever even existed, other than the movie

> > " Bubble Boy " . Now I

> > struggle getting family members and friends to

> understand.

> >

> > > For us, IVIg has given Maggie a chance to

> live.

> > She had spent

> > almost 11 years growing up in hospitals. Missing out

> on

> > birthdays and

> > holidays and never knowing what it was like to go an

> entire

> > month

> > without being sick. Since the end of June Maggie has

> not

> > had any

> > infections (other than in her toe because she chose to

> > remove an

> > ingrown toenail on her own!)

> > > We are looking at doing Sub Q Ig in the

> next few

> > months, once

> > a week. She is getting 51 grams of Carimmune every

> other

> > week right

> > now. She does get a headache but they run the infusion

> slow

> > and with

> > normal saline, this has helped with side effects. She

> also

> > takes

> > Benedryl and Tylenol before each infusion. To her it

> is 24

> > hours of

> > yuck for 14 days of feeling good. Not ever forgetting

> the

> > infections

> > she is not getting in between as well.

> > > Well enough about us, I just wanted to

> introduce

> > her and I to

> > your group. We are looking forward to meeting others

> who

> > like us are

> > learning and also those of you who have experience in

> the

> > world of PIDD.

> > >

> > > Thank you,

> > >

> > > Diane and Maggie age 11(OI,CP,Systemic

> > JIA,uveitis, PIDD)

> > >

>

>

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Posted
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Mental illness is very hard to grasp. He is also ADD but not ADHD so the

hyperactivity is not there. He has a too laid back personality where he is

affected by everything around him. His mood changes frequently. He is such a

sweet little guy but very hard to deal with. Yes getting him up is a major

ordeal.I use to have to dress him when he was sleeping, now we get dressed the

night before ( wierd huh) Keeping him in school getting chores done or ANYTHING

takes my RESOLVE to make it happen. I am NEVER off with him. I know God sent

him to me to teach me patience. I think I have developed a bit but I do not know

if you can ever have enough to handle a child like this. There is NEVER a dull

moment with how he is going to respond to his environment. One minute he is

elated and laughing and having a good time and then he thinks about something or

remembers something or something happens and he is in a rage, tantrum or wants

to die. It is amazing to watch. (

in a bad way) Now that he is older I have to continue to stay on top of things

so that he will continue to develop the self control to be able to take care of

himself in the future. He has a very high IQ and that is great but it prevents

us getting help because he is capable but often too disorganized in his thoughts

to accomplish much. He lives life out of FEAR, that he will fail or not be good

enough,or will not be able or will look stupid or what ever. It is a sad place

to come from. I struggle with getting him to try ANYTHING new. He fights me on

everything. But..... would I trade my little guy NO, when I adopted him at birth

he became my gift from God and I believe my preparation as a nurse also has

saved both of my kids lives.

My daughter has multiple health problems as well. They are not visible from the

outside either so very misunderstood. ( her birth mom used drugs so she has

numerous congenital organ anomalies, heart, liver, kidneys, uterus, PCOS,

migraines etc)

I DO NOT have family support my family is a driven family and believes that

since I adopted my kids then it was my choice to bring problems into my life. My

husband was very depressed, and probably bipolar and has refused to take meds so

has lived his life between jobs. I stayed with him for 20 years and then moved

way out of state so that he could not be in there lives daily to continue to

cause the dysfunctional chaos. He is a nice person, but does not function except

with his music and computer. He loves his kids but does not know how to help

them so does do better having a phone relationship with them. ( he always has

ALL the answers but very impractical and drives me crazy with his trying to FIX

everything) I have been away for two years in OK from WA state. Lucas is doing

much better mostly because I can be consistent. His PID is stabalizing on Sub Q.

He had pneumonia last year and a couple of sinus infections but other than that

has been VERY

stable. You will love Sub Q, I know that there are a few who do not but my

experience has been amazing. I do sometimes dread doing it because it is up to

me and he does fight me sometimes but it is what it is and he does not have a

choice. I have developed a counseling support system that comes to our home and

I use them as backup . I tell him he will go inpatient if he does not do the

infusion. AND he know that I mean what I say so he has done it most of time. But

EXHAUSTING to always have to be so consistent.

Sorry to write a book but nice to talk to you.

BARBIE

Re: New to your group! (kind of

> long)

> > groups (DOT) com

> > Date: Monday, August 18, 2008, 11:29 PM

> > HI Diane,

> >

> > Wow- 51 grams every other week! How long do your

> infusions

> > take? What

> > rate do you guys infuse at?

> >

> > I am thrilled to hear your daughter is doing so much

> better

> > and is

> > starting to have a normal quality of life...Welcome to

> the

> > group.

> >

> > best,

> > Cyndi

> >

> >

> >

> >

> >

> > >

> > > Hello to Everyone,

> > >

> > > Just wanted to introduce myself and my

> > daughter Maggie to

> > your group.

> > > My name is Diane and my husbands name is

> Brad.

> > We have 4

> > beautiful daughters, Caitlyn age 19, le age 18,

> > Allyson age 14

> > and Maggie age 11.

> > > Maggie was born with a bone disease

> called

> > Osteogenesis

> > Imperfecta. She has had hundreds of broken bones in

> her

> > life so far,

> > we have been giving her infusions of a med called

> > Pamidronate since

> > age 4 and she is doing wonderful since. On the average

> she

> > breaks

> > about 4 times per year instead of 4 times per month

> now.

> > > She also has CP. She had a Baclofen Pump

> > placed in her

> > stomach to help with muscle spasticity at age 7 and is

> > doing wonderful

> > for that now and is even able to walk short distances.

> (up

> > to about 30

> > feet)

> > > She has been sick her whole life, ear

> > infections, pnemonia

> > requiring many hospitalizations for IV meds, sinus

> > infections, staph

> > infections, kidney infections with bactera such as

> > Pseudomonas,

> > bloodstream infections, cellulitis, and recently

> > Disseminated

> > Histoplasmosis (a fungal infection in her bloodstream)

> . But

> > it wasn't

> > until we almost lost her for the 3rd time last spring

> and

> > she was

> > diagnosed with Systemic JIA, that her Rheumatologist

> > suggested seeing

> > an Immunologist because she was always so sick. At

> that

> > point she was

> > 9 years old and for 9 years her doctors blamed all of

> her

> > illnesses on

> > the fact that she has OI.(broken bones yes,

> > infections.. ..no)

> > > Maggie was diagnosed with Primary Immune

> > Deficiency last

> > April, it has taken her Immunologist months to

> pinpoint an

> > actual name

> > because some of her infections have been so huge.

> Finally

> > two weeks

> > ago they sent us a letter stating that she falls into

> the

> > catagory of

> > CVID,more on the severe end of things, having low

> > immunoglobulins, low

> > switching B cells, Raging Cytokines, autoimmune

> disease

> > which has

> > attacked all of her internal organs as well as her

> joints

> > and the list

> > went on. We were told that her Immune Deficiency was

> what

> > caused her

> > autoimmune disease.

> > > Even while on 40mgs of Prednisone,

> > Methotrexate, Celebrex for

> > her arthritis she was still having up to 27 stools a

> day

> > and had

> > ulcers all over her body on her skin which would not

> heal

> > even after

> > months of antibiotics and Hyperbaric Oxygen Therapy.

> > > Maggie's doctors started her on IVIg

> in

> > February. In February

> > it was more for an anti inflammatory for her arthritis

> > issues. She

> > received an infusion every 4 weeks until about May. In

> May

> > they

> > decided to increase her infusions to every 3 weeks.

> Maggie

> > was

> > spending less and less time in the hospital and for

> the

> > first time in

> > 11 years went an entire month without a sinus

> infection.

> > Her ulcers

> > would just about heal and for two weeks after her IVIg

> she

> > was having

> > only 1 or 2 normal stools a day. Her energy level

> increased

> > a little

> > bit and she actually had a feel good all over kind of

> > response.

> > > In July her Immunologist increased her

> infusions

> > to every

> > other week. This way, she doesn't have a week of

> > sickness or ulcers

> > breaking back open and it is time for another

> infusion.

> > > Before she was diagnosed with PIDD I had no

> clue

> > that anything

> > like this ever even existed, other than the movie

> > " Bubble Boy " . Now I

> > struggle getting family members and friends to

> understand.

> >

> > > For us, IVIg has given Maggie a chance to

> live.

> > She had spent

> > almost 11 years growing up in hospitals. Missing out

> on

> > birthdays and

> > holidays and never knowing what it was like to go an

> entire

> > month

> > without being sick. Since the end of June Maggie has

> not

> > had any

> > infections (other than in her toe because she chose to

> > remove an

> > ingrown toenail on her own!)

> > > We are looking at doing Sub Q Ig in the

> next few

> > months, once

> > a week. She is getting 51 grams of Carimmune every

> other

> > week right

> > now. She does get a headache but they run the infusion

> slow

> > and with

> > normal saline, this has helped with side effects. She

> also

> > takes

> > Benedryl and Tylenol before each infusion. To her it

> is 24

> > hours of

> > yuck for 14 days of feeling good. Not ever forgetting

> the

> > infections

> > she is not getting in between as well.

> > > Well enough about us, I just wanted to

> introduce

> > her and I to

> > your group. We are looking forward to meeting others

> who

> > like us are

> > learning and also those of you who have experience in

> the

> > world of PIDD.

> > >

> > > Thank you,

> > >

> > > Diane and Maggie age 11(OI,CP,Systemic

> > JIA,uveitis, PIDD)

> > >

>

>

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Posted
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Hello Barbie,

Never apologize for writing a book to me, I love adult conversation....even

if it is in Cyberspace!!

Does your son enjoy music?

Maggie has a music therapist in Iowa City that taught her to play the guitar

over the last few years. Now Maggie can release some of her stress in her music,

it is wonderful for her. I also love to hear her sing, especially when her days

are not going so great, she always seems to be able to pull out a song!

Because she has physical disabilities, she really cannot play sports like

other kids, but she dives into her music. She has been playing the violin since

age two and reading music since age 4. Because of her arthritis she can no

longer hold up her violin and bend her wrist to play,the guitar has been a

wonderful switch for her.

Also, another really neat thing her music therapist did for her was to

contact the " Songs of Love " foundation. It is totally awesome.....

www.songsoflove.org

These people will write a song about your child if they are chronically ill.

You can go out to the website and fill out the information, it is completely

free for you. You give them as much information as you can about your child and

they have professional singer/songwriters that make a special CD trying to fit

in as many things that are wonderful about your child including pets and family

memebers names.

When we finally received Maggie's her therapist and I both cried, Maggie just

wanted to hear it again and again. It was very special to all of us and they did

a wonderful job.

We sing it a lot especially when doing things she really hates to do, like

her shots. Just kind of lightens up the moment a bit, whatever works....we do!!

All kids with PIDD would qualify, I think it would be a really neat thing for

anyone!

Hang in there, I am always here to chat.....I believe when we need a friend

(or friends) God sends them,even if they are sent in mysterious ways sometimes!

I think these groups are awesome, we are all at different levels of strength and

we can pull from each other as needed. What a wonderful thing for our sanity as

well!!

Big bear Hugs from Iowa!!

Diane and Maggie

> >

> > > From: CYNDITK <cyndisongaia (DOT) com>

> > > Subject: Re: New to your group! (kind of

> > long)

> > > groups (DOT) com

> > > Date: Monday, August 18, 2008, 11:29 PM

> > > HI Diane,

> > >

> > > Wow- 51 grams every other week! How long do your

> > infusions

> > > take? What

> > > rate do you guys infuse at?

> > >

> > > I am thrilled to hear your daughter is doing so

> much

> > better

> > > and is

> > > starting to have a normal quality of

> life...Welcome to

> > the

> > > group.

> > >

> > > best,

> > > Cyndi

> > >

> > >

> > >

> > >

> > >

> > > >

> > > > Hello to Everyone,

> > > >

> > > > Just wanted to introduce myself and my

> > > daughter Maggie to

> > > your group.

> > > > My name is Diane and my husbands name is

> > Brad.

> > > We have 4

> > > beautiful daughters, Caitlyn age 19, le age

> 18,

> > > Allyson age 14

> > > and Maggie age 11.

> > > > Maggie was born with a bone disease

> > called

> > > Osteogenesis

> > > Imperfecta. She has had hundreds of broken bones

> in

> > her

> > > life so far,

> > > we have been giving her infusions of a med called

> > > Pamidronate since

> > > age 4 and she is doing wonderful since. On the

> average

> > she

> > > breaks

> > > about 4 times per year instead of 4 times per

> month

> > now.

> > > > She also has CP. She had a Baclofen Pump

> > > placed in her

> > > stomach to help with muscle spasticity at age 7

> and is

> > > doing wonderful

> > > for that now and is even able to walk short

> distances.

> > (up

> > > to about 30

> > > feet)

> > > > She has been sick her whole life, ear

> > > infections, pnemonia

> > > requiring many hospitalizations for IV meds,

> sinus

> > > infections, staph

> > > infections, kidney infections with bactera such

> as

> > > Pseudomonas,

> > > bloodstream infections, cellulitis, and recently

> > > Disseminated

> > > Histoplasmosis (a fungal infection in her

> bloodstream)

> > . But

> > > it wasn't

> > > until we almost lost her for the 3rd time last

> spring

> > and

> > > she was

> > > diagnosed with Systemic JIA, that her

> Rheumatologist

> > > suggested seeing

> > > an Immunologist because she was always so sick.

> At

> > that

> > > point she was

> > > 9 years old and for 9 years her doctors blamed

> all of

> > her

> > > illnesses on

> > > the fact that she has OI.(broken bones yes,

> > > infections.. ..no)

> > > > Maggie was diagnosed with Primary Immune

> > > Deficiency last

> > > April, it has taken her Immunologist months to

> > pinpoint an

> > > actual name

> > > because some of her infections have been so huge.

> > Finally

> > > two weeks

> > > ago they sent us a letter stating that she falls

> into

> > the

> > > catagory of

> > > CVID,more on the severe end of things, having low

> > > immunoglobulins, low

> > > switching B cells, Raging Cytokines, autoimmune

> > disease

> > > which has

> > > attacked all of her internal organs as well as

> her

> > joints

> > > and the list

> > > went on. We were told that her Immune Deficiency

> was

> > what

> > > caused her

> > > autoimmune disease.

> > > > Even while on 40mgs of Prednisone,

> > > Methotrexate, Celebrex for

> > > her arthritis she was still having up to 27

> stools a

> > day

> > > and had

> > > ulcers all over her body on her skin which would

> not

> > heal

> > > even after

> > > months of antibiotics and Hyperbaric Oxygen

> Therapy.

> > > > Maggie's doctors started her on IVIg

> > in

> > > February. In February

> > > it was more for an anti inflammatory for her

> arthritis

> > > issues. She

> > > received an infusion every 4 weeks until about

> May. In

> > May

> > > they

> > > decided to increase her infusions to every 3

> weeks.

> > Maggie

> > > was

> > > spending less and less time in the hospital and

> for

> > the

> > > first time in

> > > 11 years went an entire month without a sinus

> > infection.

> > > Her ulcers

> > > would just about heal and for two weeks after her

> IVIg

> > she

> > > was having

> > > only 1 or 2 normal stools a day. Her energy level

> > increased

> > > a little

> > > bit and she actually had a feel good all over

> kind of

> > > response.

> > > > In July her Immunologist increased her

> > infusions

> > > to every

> > > other week. This way, she doesn't have a week

> of

> > > sickness or ulcers

> > > breaking back open and it is time for another

> > infusion.

> > > > Before she was diagnosed with PIDD I had no

> > clue

> > > that anything

> > > like this ever even existed, other than the movie

> > > " Bubble Boy " . Now I

> > > struggle getting family members and friends to

> > understand.

> > >

> > > > For us, IVIg has given Maggie a chance to

> > live.

> > > She had spent

> > > almost 11 years growing up in hospitals. Missing

> out

> > on

> > > birthdays and

> > > holidays and never knowing what it was like to go

> an

> > entire

> > > month

> > > without being sick. Since the end of June Maggie

> has

> > not

> > > had any

> > > infections (other than in her toe because she

> chose to

> > > remove an

> > > ingrown toenail on her own!)

> > > > We are looking at doing Sub Q Ig in the

> > next few

> > > months, once

> > > a week. She is getting 51 grams of Carimmune

> every

> > other

> > > week right

> > > now. She does get a headache but they run the

> infusion

> > slow

> > > and with

> > > normal saline, this has helped with side effects.

> She

> > also

> > > takes

> > > Benedryl and Tylenol before each infusion. To her

> it

> > is 24

> > > hours of

> > > yuck for 14 days of feeling good. Not ever

> forgetting

> > the

> > > infections

> > > she is not getting in between as well.

> > > > Well enough about us, I just wanted to

> > introduce

> > > her and I to

> > > your group. We are looking forward to meeting

> others

> > who

> > > like us are

> > > learning and also those of you who have

> experience in

> > the

> > > world of PIDD.

> > > >

> > > > Thank you,

> > > >

> > > > Diane and Maggie age 11(OI,CP,Systemic

> > > JIA,uveitis, PIDD)

> > > >

> >

> >

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I am always curious as to why Maggie loves to sit and listen to the 70+

conversation about bowels and hemmorroids, but I guess in a sense at least they

are not talking about HER body so it might even be just a little refreshing to

her!!(too bad grandma lives an hour away!)

She loves her Grandma and Grandma lives in a 55+ apartment complex so Maggie

thinks it is great to go there on card night!

Grandma just won 100 dollars at BINGO so now Maggie has it in her mind she

needs to go there too, only her Immunologist says....NO. No large tight crowds

and the BINGO parlor is wall to wall people, so Cards in Grandma's complex is

the best it is going to get for her!!

She wants to be 18 so she can vote and 21 so she can go on the Boat to Gamble

with Grandma.

AHHHH, she makes me so proud sometimes!!

Diane and Maggie

> > >

> > > > From: Barbara Jimenez <mother5590 (DOT)

> com>

> > > > Subject: Re: New to your group!

> (kind of

> > > long)

> > > > groups (DOT) com

> > > > Date: Tuesday, August 19, 2008, 1:58 AM

> > > > Welcome to the PID World. I am Barbie and I

> have a son

> > > who

> > > > is 12 and has CVID. We found it as an infant

> and he

> > > has had

> > > > many infections. We started IVIg at age 3

> but waited

> > > too

> > > > long in hopes he would outgrow it. 2 years

> ago we

> > > started

> > > > Sub Q and have not looked back. Still an

> occasional

> > > > breakthrough but overall he is doing

> GREAT!!. He also

> > > is

> > > > Bipolar and has other mental health issues

> but I feel

> > > > blessed that he is beginning to feel so good

> MOST of

> > > the

> > > > time. Sounds like Maggie is finally on the

> right

> > > track.

> > > >

> > > > BARBIE

> > > >

> > > >

> > > >

> > > > New to your group! (kind

> of long)

> > > >

> > > >

> > > > Hello to Everyone,

> > > >

> > > > Just wanted to introduce myself and my

> daughter Maggie

> > > to

> > > > your group.

> > > > My name is Diane and my husbands name is

> Brad. We have

> > > 4

> > > > beautiful daughters, Caitlyn age 19,

> le age 18,

> > > > Allyson age 14 and Maggie age 11.

> > > > Maggie was born with a bone disease called

> > > Osteogenesis

> > > > Imperfecta. She has had hundreds of broken

> bones in

> > > her life

> > > > so far, we have been giving her infusions of

> a med

> > > called

> > > > Pamidronate since age 4 and she is doing

> wonderful

> > > since. On

> > > > the average she breaks about 4 times per

> year instead

> > > of 4

> > > > times per month now.

> > > > She also has CP. She had a Baclofen Pump

> placed in her

> > > > stomach to help with muscle spasticity at

> age 7 and is

> > > doing

> > > > wonderful for that now and is even able to

> walk short

> > > > distances. (up to about 30 feet)

> > > > She has been sick her whole life, ear

> infections,

> > > pnemonia

> > > > requiring many hospitalizations for IV meds,

> sinus

> > > > infections, staph infections, kidney

> infections with

> > > bactera

> > > > such as Pseudomonas, bloodstream infections,

> > > cellulitis, and

> > > > recently Disseminated Histoplasmosis (a

> fungal

> > > infection in

> > > > her bloodstream) . But it wasn't until

> we almost

> > > lost

> > > > her for the 3rd time last spring and she was

> diagnosed

> > > with

> > > > Systemic JIA, that her Rheumatologist

> suggested seeing

> > > an

> > > > Immunologist because she was always so sick.

> At that

> > > point

> > > > she was 9 years old and for 9 years her

> doctors blamed

> > > all

> > > > of her illnesses on the fact that she has

> OI.(broken

> > > bones

> > > > yes, infections.. ..no)

> > > > Maggie was diagnosed with Primary Immune

> Deficiency

> > > last

> > > > April, it has taken her Immunologist months

> to

> > > pinpoint an

> > > > actual name because some of her infections

> have been

> > > so

> > > > huge. Finally two weeks ago they sent us a

> letter

> > > stating

> > > > that she falls into the catagory of

> CVID,more on the

> > > severe

> > > > end of things, having low immunoglobulins,

> low

> > > switching B

> > > > cells, Raging Cytokines, autoimmune disease

> which has

> > > > attacked all of her internal organs as well

> as her

> > > joints

> > > > and the list went on. We were told that her

> Immune

> > > > Deficiency was what caused her autoimmune

> disease.

> > > > Even while on 40mgs of Prednisone,

> Methotrexate,

> > > Celebrex

> > > > for her arthritis she was still having up to

> 27 stools

> > > a day

> > > > and had ulcers all over her body on her skin

> which

> > > would not

> > > > heal even after months of antibiotics and

> Hyperbaric

> > > Oxygen

> > > > Therapy.

> > > > Maggie's doctors started her on IVIg in

> February.

> > > In

> > > > February it was more for an anti

> inflammatory for her

> > > > arthritis issues. She received an infusion

> every 4

> > > weeks

> > > > until about May. In May they decided to

> increase her

> > > > infusions to every 3 weeks. Maggie was

> spending less

> > > and

> > > > less time in the hospital and for the first

> time in 11

> > > years

> > > > went an entire month without a sinus

> infection. Her

> > > ulcers

> > > > would just about heal and for two weeks

> after her IVIg

> > > she

> > > > was having only 1 or 2 normal stools a day.

> Her energy

> > > level

> > > > increased a little bit and she actually had

> a feel

> > > good all

> > > > over kind of response.

> > > > In July her Immunologist increased her

> infusions to

> > > every

> > > > other week. This way, she doesn't have a

> week of

> > > > sickness or ulcers breaking back open and it

> is time

> > > for

> > > > another infusion.

> > > > Before she was diagnosed with PIDD I had no

> clue that

> > > > anything like this ever even existed, other

> than the

> > > movie

> > > > " Bubble Boy " . Now I struggle

> getting

> > > family

> > > > members and friends to understand.

> > > > For us, IVIg has given Maggie a chance to

> live. She

> > > had

> > > > spent almost 11 years growing up in

> hospitals. Missing

> > > out

> > > > on birthdays and holidays and never knowing

> what it

> > > was like

> > > > to go an entire month without being sick.

> Since the

> > > end of

> > > > June Maggie has not had any infections

> (other than in

> > > her

> > > > toe because she chose to remove an ingrown

> toenail on

> > > her

> > > > own!)

> > > > We are looking at doing Sub Q Ig in the next

> few

> > > months,

> > > > once a week. She is getting 51 grams of

> Carimmune

> > > every

> > > > other week right now. She does get a

> headache but they

> > > run

> > > > the infusion slow and with normal saline,

> this has

> > > helped

> > > > with side effects. She also takes Benedryl

> and Tylenol

> > > > before each infusion. To her it is 24 hours

> of yuck

> > > for 14

> > > > days of feeling good. Not ever forgetting

> the

> > > infections she

> > > > is not getting in between as well.

> > > > Well enough about us, I just wanted to

> introduce her

> > > and I

> > > > to your group. We are looking forward to

> meeting

> > > others who

> > > > like us are learning and also those of you

> who have

> > > > experience in the world of PIDD.

> > > >

> > > > Thank you,

> > > >

> > > > Diane and Maggie age 11(OI,CP,Systemic

> JIA,uveitis,

> > > PIDD)

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > [Non-text portions of this message have been

> removed]

> > >

> > >

> > >

> > >

> > >

> > >

> > > [Non-text portions of this message have been

> removed]

> >

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