New here

[Guest guest]

Welcome, ! You are smart to take charge of your children's health. As for school exemptions, I would not count on other exemptions to become law by the time your son becomes of school age. Best to plan to homeschool, travel to a school out of state if it's not too far, or move.

It's not fair to be put in this spot, but that's the reality. Oh, another option might be to find a doctor who will give a medical exemption based on family history. Mine offered that (which I declined) but I'm not in as vaccine-crazed state as WV. Try a family doctor who might be less likely to care about vaccines than a pediatrician.

Winnie new hereVaccinations > my name is elizabeth, and i have two boys. my oldest will be > seven next > month, and the baby is 16 months. connor was born at 27 weeks, > had a > delayed/seperated shot schedule until he started having > seizures, and now has a > medical exemption. his ongoing problems that are from his > prematurity, > vaccinating, or both, are autism, adhd, seizures and mild > spastic cp. > > hudson was technically a preemie at 36 weeks. he has never been > vaccinated, and i hope to never have to vaccinate him. i live in > west virginia, so i > don't currently have the option of a religious or philosophical > exemption. > the only exemption allowed is a medical exemption, which is only > obtainable > AFTER the child has been harmed. i am hoping west virginia comes > around > and offers a legal way out before hudson has to go to school. if > not, i'm not > sure what we will do.> > we are currently looking for a new pediatrician. i just wasn't > happy with > our last one, and since connor's medical exemption was finally > put into > writing, i felt it was time to start looking for a new one. one > of the doctors > i interviewed was great. her office was nice, the staff was > friendly, she > was friendly. then we got to the vaccines. she refused to take > my kids on as > patients because of their vaccination status. she said she > never gives a > medical exemption, that vaccines are always in the child's best > interests, > blah blah blah.> > i joined this group to get the most information i can to be the > best > advocate i can be for my children. i am not worried about my > boys getting any of > the diseases they are vaccinated against. if they do, we will > treat the > illness and be better off for having had the illness as opposed > to the > vaccine. i want to find a way to get hudson an exemption before > he gets his first > shot. i will fight all i have to. i know i need to be armed with > much more > information and knowledge than i already have. thank you for > letting me > join this group, and i am so looking forward to everything i am > going to > learn.> > > west virginia> > > > (http://lilypie.com/) > (http://lilypie.com/) > (http://lilypie.com/) > (http://daisypath.com/) >

[Guest guest]

________________________________

Welcome!

So here are my questions:

How does one lose Igs is their body is making enough?

Through the bowel if I'm not mistaken.

Does anyone have low IGG and IGA and get infusion therapy? What precautions

have been taken to guard against an allergic reaction to the IGA plasma? We

were told when we first found out about the low IGA that if he needed a

transfusion during one of his surgeries that he could have anaphylaxis from

the IGA in the donor blood.

Pretty much everyone's child on this list gets IG therapy, at least all the more

active list members. The IgA def issue isn't much of an issue, just need to pick

a low IgA IG product.

What side effects have your kids had from the IGIV therapy?

For us they were horrible but still better then the nightmare we had been

living, no more life threatening infections. We switched to weekly sub-q

infusions as soon as possible which was around a year of IV. Would have done it

sooner but no SCIG training was available in our area.

Has anyone gotten infections from the donor plasma?

Not that I am aware of but it is a blood product and its possible for a new

infection to slip in the to the supply but believe me, they react fast as soon

as they realize a problem.

Has anyone donated their own plasma for their kids infusions?

You can't, you can donate if you qualify to the general donor pool but it takes

around 50,000 donors to make a dose of IG and it takes around 1 year to process

it. IG Living mag did an article on it last year on how IG products are made,

you can probably find it in the back issues online archive www.igliving.com.

If your kid has CVID, does your child need infusions for life?

Usually, some kids outgrow it around puberty but its rare.

Has their rate of infection gone down once starting the therapy?

Yes! It may take 6 months or so to really see the effect but we started seeing

it help pretty fast but considering the amount of infections we were dealing

with even 1-2 less a month was noticeable.

[Guest guest]

I can only answer a few of your questions, but there should be others that

can answer more in depth:

*What side effects have your kids had from the IGIV therapy?*

Headaches and Nausea that went away with Benadryl and Motrin. Most recently,

he had aseptic meningitis, but that was more because he was dehydrated prior

to infusion and we increased the dose.

*Has anyone gotten infections from the donor plasma?*

No

*Has anyone donated their own plasma for their kids infusions?*

This can not be done, as it takes several thousand donors for one infusion.

*If your kid has CVID, does your child need infusions for life?

*

We are doing infusions until his senior year- and then stopping for three

months to re-check his levels.

*Has their rate of infection gone down once starting the therapy?

*Enormously. Doing IVIG has helped him live a near typical life.

Best of luck,

On Sun, Apr 18, 2010 at 8:33 AM, <fancyflowers@...> wrote:

>

>

>

>

> How does one lose Igs is their body is making enough?

>

> Does anyone have low IGG and IGA and get infusion therapy? What precautions

> have been taken to guard against an allergic reaction to the IGA plasma? We

> were told when we first found out about the low IGA that if he needed a

> transfusion during one of his surgeries that he could have anaphylaxis from

> the IGA in the donor blood.

>

> What side effects have your kids had from the IGIV therapy?

>

> Has anyone gotten infections from the donor plasma?

>

> Has anyone donated their own plasma for their kids infusions?

>

> If your kid has CVID, does your child need infusions for life?

>

> Has their rate of infection gone down once starting the therapy?

>

> I was told that my son now has a 50 fold chance of getting leukemia or

> malignancy. Does this decrease when they start therapy?

>

> My son also has kidney issues, including kidney damage. Will the infusion

> therapy make this worse?

>

> The weird thing about all of this is he's never been sick. He has chronic

> UTIs and he's on prophylaxis antibiotics, but he has a neurogenic bladder.

>

> Missy

> Mommy to , my 2 year old Monster with VACTERLS

>

>

[Guest guest]

,

Thank you so much answering most of my questions. Sorry if I sound

un-informed, but this was all kind of dumped on us between Thursday and

Friday. We are hoping to get more answers when we see the doctors again

Tuesday. My son has SO much going on right now and unfortunately this is at

the lower end of his issues for the moment. I'm quite overwhelmed to say

the least.

Missy

Mommy to , my 2 year old Monster with VACTERLS

From: [mailto: ] On Behalf Of

Madden

Sent: Sunday, April 18, 2010 12:05 PM

Subject: Re: New Here

________________________________

Welcome!

So here are my questions:

How does one lose Igs is their body is making enough?

Through the bowel if I'm not mistaken.

Does anyone have low IGG and IGA and get infusion therapy? What precautions

have been taken to guard against an allergic reaction to the IGA plasma? We

were told when we first found out about the low IGA that if he needed a

transfusion during one of his surgeries that he could have anaphylaxis from

the IGA in the donor blood.

Pretty much everyone's child on this list gets IG therapy, at least all the

more active list members. The IgA def issue isn't much of an issue, just

need to pick a low IgA IG product.

What side effects have your kids had from the IGIV therapy?

For us they were horrible but still better then the nightmare we had been

living, no more life threatening infections. We switched to weekly sub-q

infusions as soon as possible which was around a year of IV. Would have done

it sooner but no SCIG training was available in our area.

Has anyone gotten infections from the donor plasma?

Not that I am aware of but it is a blood product and its possible for a new

infection to slip in the to the supply but believe me, they react fast as

soon as they realize a problem.

Has anyone donated their own plasma for their kids infusions?

You can't, you can donate if you qualify to the general donor pool but it

takes around 50,000 donors to make a dose of IG and it takes around 1 year

to process it. IG Living mag did an article on it last year on how IG

products are made, you can probably find it in the back issues online

archive www.igliving.com.

If your kid has CVID, does your child need infusions for life?

Usually, some kids outgrow it around puberty but its rare.

Has their rate of infection gone down once starting the therapy?

Yes! It may take 6 months or so to really see the effect but we started

seeing it help pretty fast but considering the amount of infections we were

dealing with even 1-2 less a month was noticeable.

[Guest guest]

,

Thank you so much answering most of my questions. Sorry if I sound

un-informed, but this was all kind of dumped on us between Thursday and

Friday. We are hoping to get more answers when we see the doctors again

Tuesday. My son has SO much going on right now and unfortunately this is at

the lower end of his issues for the moment. I'm quite overwhelmed to say

the least.

Missy

Mommy to , my 2 year old Monster with VACTERLS

From: [mailto: ] On Behalf Of

Madden

Sent: Sunday, April 18, 2010 12:05 PM

Subject: Re: New Here

________________________________

Welcome!

So here are my questions:

How does one lose Igs is their body is making enough?

Through the bowel if I'm not mistaken.

Does anyone have low IGG and IGA and get infusion therapy? What precautions

have been taken to guard against an allergic reaction to the IGA plasma? We

were told when we first found out about the low IGA that if he needed a

transfusion during one of his surgeries that he could have anaphylaxis from

the IGA in the donor blood.

Pretty much everyone's child on this list gets IG therapy, at least all the

more active list members. The IgA def issue isn't much of an issue, just

need to pick a low IgA IG product.

What side effects have your kids had from the IGIV therapy?

For us they were horrible but still better then the nightmare we had been

living, no more life threatening infections. We switched to weekly sub-q

infusions as soon as possible which was around a year of IV. Would have done

it sooner but no SCIG training was available in our area.

Has anyone gotten infections from the donor plasma?

Not that I am aware of but it is a blood product and its possible for a new

infection to slip in the to the supply but believe me, they react fast as

soon as they realize a problem.

Has anyone donated their own plasma for their kids infusions?

You can't, you can donate if you qualify to the general donor pool but it

takes around 50,000 donors to make a dose of IG and it takes around 1 year

to process it. IG Living mag did an article on it last year on how IG

products are made, you can probably find it in the back issues online

archive www.igliving.com.

If your kid has CVID, does your child need infusions for life?

Usually, some kids outgrow it around puberty but its rare.

Has their rate of infection gone down once starting the therapy?

Yes! It may take 6 months or so to really see the effect but we started

seeing it help pretty fast but considering the amount of infections we were

dealing with even 1-2 less a month was noticeable.

[Guest guest]

How does one lose Igs is their body is making enough?

Typically, this is a result of protein-losing enteropathy which is a kidney

problem. A urinalysis would show protein in the urine. Since he has kidney

issues, this is a definite possibility as all immunoglobulins (IgG, IgA,

etc) are proteins.

If your kid has CVID, does your child need infusions for life?

Depends - at his age it could definitely be transient because his immune

system isn't fully developed.

I was told that my son now has a 50 fold chance of getting leukemia or

malignancy. Does this decrease when they start therapy?

What was the basis for this statement? Because of CVID or the VACTERL?

My son also has kidney issues, including kidney damage. Will the infusion

therapy make this worse?

You would definitely need to discuss this with his doctors but there are

some products with more sodium than others as well as sugar as the

stabilizing agent, both of which you may want to avoid.

The weird thing about all of this is he's never been sick.

If he's never been sick and he's 2 years old, I would be surprised that they

recommend IVIG right away since he hasn't had time for his immune system to

be fully developed. I know another mom whose daughter has VACTERL that does

IVIG but she is (even still) constantly sick.

As for your other questions, I'm sure you'll get lots of responses. I trust

given his other issues that he is being seen at a children's hospital.

Where do you live?

Mom to 4, 3 with mito

Carmel, IN

[Guest guest]

I meant to say that protein losing enteropathy could be a cause (through the

GI tract, which you mentioned he has malabsorption issues) or he could be

spilling protein from his kidneys (which he also has issues with). Blood

work would indicate low protein but not necessarily the cause but a

urinalysis would should protein in the urine if it's a kidney issue.

From: Hobbs [mailto:hobbsfamily@...]

Sent: Sunday, April 18, 2010 1:32 PM

' '

Subject: RE: New Here

How does one lose Igs is their body is making enough?

Typically, this is a result of protein-losing enteropathy which is a kidney

problem. A urinalysis would show protein in the urine. Since he has kidney

issues, this is a definite possibility as all immunoglobulins (IgG, IgA,

etc) are proteins.

If your kid has CVID, does your child need infusions for life?

Depends - at his age it could definitely be transient because his immune

system isn't fully developed.

I was told that my son now has a 50 fold chance of getting leukemia or

malignancy. Does this decrease when they start therapy?

What was the basis for this statement? Because of CVID or the VACTERL?

My son also has kidney issues, including kidney damage. Will the infusion

therapy make this worse?

You would definitely need to discuss this with his doctors but there are

some products with more sodium than others as well as sugar as the

stabilizing agent, both of which you may want to avoid.

The weird thing about all of this is he's never been sick.

If he's never been sick and he's 2 years old, I would be surprised that they

recommend IVIG right away since he hasn't had time for his immune system to

be fully developed. I know another mom whose daughter has VACTERL that does

IVIG but she is (even still) constantly sick.

As for your other questions, I'm sure you'll get lots of responses. I trust

given his other issues that he is being seen at a children's hospital.

Where do you live?

Mom to 4, 3 with mito

Carmel, IN

[Guest guest]

Well, that makes more sense now. See, I thought you said he's never sick

but respiratory infections and UTIs could definitely be decreased if he was

on IVIG. Interesting you went to Dr. Shoffner - so did we! Just got our

biopsy results back a few weeks ago. In fact, the other VACTERL mom I know

just found out her daughter has mito. I'll have to put the 2 of you

together. They are in Boston so probably not all that far from you!

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

From: [mailto: ] On Behalf Of

Sent: Sunday, April 18, 2010 1:45 PM

Subject: RE: New Here

,

Thank you so much for the information! We live in Montgomery County, Pa.

used to go to CHOP, but they left him with multiple, unresolved

medical issues, including kidney damage. We are now at A.I. Dupont in

Delaware have not once looked back. His doctors have been an excellent team

and have given my son a second chance at a " normal " life.

" I was told that my son now has a 50 fold chance of getting leukemia or

malignancy. Does this decrease when they start therapy? "

This statement was based on the CVID. VACTERLS is normally a constellation

of birth defects and does not normally involve malignancy or immune issues.

Those issues normally occur when the VACTERL is genetic (like VACTERL-H or

Fanconi Anemia) or if another overlapping issue is also present, like

Mitochondrial Disease. We are also waiting on Mito results from Dr.

Schoffner in Atlanta, Georgia.

" If he's never been sick and he's 2 years old, I would be surprised that

they

recommend IVIG right away since he hasn't had time for his immune system to

be fully developed. I know another mom whose daughter has VACTERL that does

IVIG but she is (even still) constantly sick. "

I would hope he does not have to start therapy right away, but from what I

have been told by his doctors, if he is not dumping the Igs than infusion

therapy would be imminent. I am guessing here, but since has

respiratory issues and chronic UTIs maybe they are hoping these instances

decrease? Or since he is only 2, maybe they are trying to head off him

getting more illnesses? I honestly am not sure of the reasoning right now.

We go back to see the doctor on Tuesday and I am hoping to leave with more

answers than questions.

We

Missy

Mommy to , my 2 year old Monster with VACTERLS

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf

Of

Hobbs

Sent: Sunday, April 18, 2010 1:32 PM

<mailto:%40>

Subject: RE: New Here

How does one lose Igs is their body is making enough?

Typically, this is a result of protein-losing enteropathy which is a kidney

problem. A urinalysis would show protein in the urine. Since he has kidney

issues, this is a definite possibility as all immunoglobulins (IgG, IgA,

etc) are proteins.

If your kid has CVID, does your child need infusions for life?

Depends - at his age it could definitely be transient because his immune

system isn't fully developed.

I was told that my son now has a 50 fold chance of getting leukemia or

malignancy. Does this decrease when they start therapy?

What was the basis for this statement? Because of CVID or the VACTERL?

My son also has kidney issues, including kidney damage. Will the infusion

therapy make this worse?

You would definitely need to discuss this with his doctors but there are

some products with more sodium than others as well as sugar as the

stabilizing agent, both of which you may want to avoid.

The weird thing about all of this is he's never been sick.

If he's never been sick and he's 2 years old, I would be surprised that they

recommend IVIG right away since he hasn't had time for his immune system to

be fully developed. I know another mom whose daughter has VACTERL that does

IVIG but she is (even still) constantly sick.

As for your other questions, I'm sure you'll get lots of responses. I trust

given his other issues that he is being seen at a children's hospital.

Where do you live?

Mom to 4, 3 with mito

Carmel, IN

[Guest guest]

Well, that makes more sense now. See, I thought you said he's never sick

but respiratory infections and UTIs could definitely be decreased if he was

on IVIG. Interesting you went to Dr. Shoffner - so did we! Just got our

biopsy results back a few weeks ago. In fact, the other VACTERL mom I know

just found out her daughter has mito. I'll have to put the 2 of you

together. They are in Boston so probably not all that far from you!

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

From: [mailto: ] On Behalf Of

Sent: Sunday, April 18, 2010 1:45 PM

Subject: RE: New Here

,

Thank you so much for the information! We live in Montgomery County, Pa.

used to go to CHOP, but they left him with multiple, unresolved

medical issues, including kidney damage. We are now at A.I. Dupont in

Delaware have not once looked back. His doctors have been an excellent team

and have given my son a second chance at a " normal " life.

" I was told that my son now has a 50 fold chance of getting leukemia or

malignancy. Does this decrease when they start therapy? "

This statement was based on the CVID. VACTERLS is normally a constellation

of birth defects and does not normally involve malignancy or immune issues.

Those issues normally occur when the VACTERL is genetic (like VACTERL-H or

Fanconi Anemia) or if another overlapping issue is also present, like

Mitochondrial Disease. We are also waiting on Mito results from Dr.

Schoffner in Atlanta, Georgia.

" If he's never been sick and he's 2 years old, I would be surprised that

they

recommend IVIG right away since he hasn't had time for his immune system to

be fully developed. I know another mom whose daughter has VACTERL that does

IVIG but she is (even still) constantly sick. "

I would hope he does not have to start therapy right away, but from what I

have been told by his doctors, if he is not dumping the Igs than infusion

therapy would be imminent. I am guessing here, but since has

respiratory issues and chronic UTIs maybe they are hoping these instances

decrease? Or since he is only 2, maybe they are trying to head off him

getting more illnesses? I honestly am not sure of the reasoning right now.

We go back to see the doctor on Tuesday and I am hoping to leave with more

answers than questions.

We

Missy

Mommy to , my 2 year old Monster with VACTERLS

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf

Of

Hobbs

Sent: Sunday, April 18, 2010 1:32 PM

<mailto:%40>

Subject: RE: New Here

How does one lose Igs is their body is making enough?

Typically, this is a result of protein-losing enteropathy which is a kidney

problem. A urinalysis would show protein in the urine. Since he has kidney

issues, this is a definite possibility as all immunoglobulins (IgG, IgA,

etc) are proteins.

If your kid has CVID, does your child need infusions for life?

Depends - at his age it could definitely be transient because his immune

system isn't fully developed.

I was told that my son now has a 50 fold chance of getting leukemia or

malignancy. Does this decrease when they start therapy?

What was the basis for this statement? Because of CVID or the VACTERL?

My son also has kidney issues, including kidney damage. Will the infusion

therapy make this worse?

You would definitely need to discuss this with his doctors but there are

some products with more sodium than others as well as sugar as the

stabilizing agent, both of which you may want to avoid.

The weird thing about all of this is he's never been sick.

If he's never been sick and he's 2 years old, I would be surprised that they

recommend IVIG right away since he hasn't had time for his immune system to

be fully developed. I know another mom whose daughter has VACTERL that does

IVIG but she is (even still) constantly sick.

As for your other questions, I'm sure you'll get lots of responses. I trust

given his other issues that he is being seen at a children's hospital.

Where do you live?

Mom to 4, 3 with mito

Carmel, IN

[Guest guest]

There's a large increase in cancer and mortality rates with CVID:(

________________________________

From: Hobbs <hobbsfamily@...>

Sent: Sun, April 18, 2010 10:54:53 AM

Subject: RE: New Here

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

[Guest guest]

Yes I have heard there is a link to increased cancers but.... with Ig

replacement my understanding is that it GREATLY reduces the opportunistic

chances of acquiring a cancer.

BARBIE

________________________________

From: Hobbs <hobbsfamily@...>

Sent: Sun, April 18, 2010 10:54:53 AM

Subject: RE: New Here

Well, that makes more sense now. See, I thought you said he's never sick

but respiratory infections and UTIs could definitely be decreased if he was

on IVIG. Interesting you went to Dr. Shoffner - so did we! Just got our

biopsy results back a few weeks ago. In fact, the other VACTERL mom I know

just found out her daughter has mito. I'll have to put the 2 of you

together. They are in Boston so probably not all that far from you!

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Sent: Sunday, April 18, 2010 1:45 PM

groups (DOT) com

Subject: RE: New Here

,

Thank you so much for the information! We live in Montgomery County, Pa.

used to go to CHOP, but they left him with multiple, unresolved

medical issues, including kidney damage. We are now at A.I. Dupont in

Delaware have not once looked back. His doctors have been an excellent team

and have given my son a second chance at a " normal " life.

" I was told that my son now has a 50 fold chance of getting leukemia or

malignancy. Does this decrease when they start therapy? "

This statement was based on the CVID. VACTERLS is normally a constellation

of birth defects and does not normally involve malignancy or immune issues.

Those issues normally occur when the VACTERL is genetic (like VACTERL-H or

Fanconi Anemia) or if another overlapping issue is also present, like

Mitochondrial Disease. We are also waiting on Mito results from Dr.

Schoffner in Atlanta, Georgia.

" If he's never been sick and he's 2 years old, I would be surprised that

they

recommend IVIG right away since he hasn't had time for his immune system to

be fully developed. I know another mom whose daughter has VACTERL that does

IVIG but she is (even still) constantly sick. "

I would hope he does not have to start therapy right away, but from what I

have been told by his doctors, if he is not dumping the Igs than infusion

therapy would be imminent. I am guessing here, but since has

respiratory issues and chronic UTIs maybe they are hoping these instances

decrease? Or since he is only 2, maybe they are trying to head off him

getting more illnesses? I honestly am not sure of the reasoning right now.

We go back to see the doctor on Tuesday and I am hoping to leave with more

answers than questions.

We

Missy

Mommy to , my 2 year old Monster with VACTERLS

From: groups (DOT) com <mailto:% 40groups. com>

[mailto:groups (DOT) com <mailto:% 40groups. com> ] On Behalf

Of

Hobbs

Sent: Sunday, April 18, 2010 1:32 PM

groups (DOT) com <mailto:% 40groups. com>

Subject: RE: New Here

How does one lose Igs is their body is making enough?

Typically, this is a result of protein-losing enteropathy which is a kidney

problem. A urinalysis would show protein in the urine. Since he has kidney

issues, this is a definite possibility as all immunoglobulins (IgG, IgA,

etc) are proteins.

If your kid has CVID, does your child need infusions for life?

Depends - at his age it could definitely be transient because his immune

system isn't fully developed.

I was told that my son now has a 50 fold chance of getting leukemia or

malignancy. Does this decrease when they start therapy?

What was the basis for this statement? Because of CVID or the VACTERL?

My son also has kidney issues, including kidney damage. Will the infusion

therapy make this worse?

You would definitely need to discuss this with his doctors but there are

some products with more sodium than others as well as sugar as the

stabilizing agent, both of which you may want to avoid.

The weird thing about all of this is he's never been sick.

If he's never been sick and he's 2 years old, I would be surprised that they

recommend IVIG right away since he hasn't had time for his immune system to

be fully developed. I know another mom whose daughter has VACTERL that does

IVIG but she is (even still) constantly sick.

As for your other questions, I'm sure you'll get lots of responses. I trust

given his other issues that he is being seen at a children's hospital.

Where do you live?

Mom to 4, 3 with mito

Carmel, IN

[Guest guest]

Nope, that dehydration came from living a " typical " life. He was bit by a

domesticated rat (goes to a private Montessori school on a farm), and was

put on antibiotics. The antibiotics caused diarrhea about day 5. He stopped

the antibiotics, but 2 days later had his infusion. The immuno doc thinks

this was just the " perfect storm " with the dehydration and dose increase.

There seem to be less side effects (for us) if he extra hydrates the day

before the infusion. It also makes it easier to get a vein.

On Sun, Apr 18, 2010 at 10:22 AM, <fancyflowers@...> wrote:

>

>

> ,

>

> Thank you so much for your answers! You said your son had " aseptic

>

> meningitis, but that was more because he was dehydrated prior

> to infusion and we increased the dose. " Is dehydration an issue with the

> therapy? My son already had dehydration issues (saline flushes through his

> cecostomy and overheating). He currently already drinks two bottles of

> Pedialyte a day and I cannot imagine him being more dehydrated, lol. He

> would have to go on IV fluids if it gets any worse.

>

>

> Missy

> Mommy to , my 2 year old Monster with VACTERLS

>

[Guest guest]

Nope, that dehydration came from living a " typical " life. He was bit by a

domesticated rat (goes to a private Montessori school on a farm), and was

put on antibiotics. The antibiotics caused diarrhea about day 5. He stopped

the antibiotics, but 2 days later had his infusion. The immuno doc thinks

this was just the " perfect storm " with the dehydration and dose increase.

There seem to be less side effects (for us) if he extra hydrates the day

before the infusion. It also makes it easier to get a vein.

On Sun, Apr 18, 2010 at 10:22 AM, <fancyflowers@...> wrote:

>

>

> ,

>

> Thank you so much for your answers! You said your son had " aseptic

>

> meningitis, but that was more because he was dehydrated prior

> to infusion and we increased the dose. " Is dehydration an issue with the

> therapy? My son already had dehydration issues (saline flushes through his

> cecostomy and overheating). He currently already drinks two bottles of

> Pedialyte a day and I cannot imagine him being more dehydrated, lol. He

> would have to go on IV fluids if it gets any worse.

>

>

> Missy

> Mommy to , my 2 year old Monster with VACTERLS

>

[Guest guest]

I have to find the article but..... with treatment the risks are greatly

reduced.....m You have to realize that most of the studies and treatments are

relatively new. So many of the old studies are based on people who were getting

IM Gamma globulin that is not a consistent delivery to protect the body from the

organ damage and chronic illnesses that the last generation endured. I

personally believe the outlook is MUCH brighter based on IV and SubQ Ig

replacement for our kids that are diagnosed now rather than later and we prevent

the complications.

BARBIE

________________________________

From: Madden <bluetaelon@...>

Sent: Sun, April 18, 2010 11:01:17 AM

Subject: Re: New Here

There's a large increase in cancer and mortality rates with CVID:(

____________ _________ _________ __

From: Hobbs <hobbsfamily@ indy.rr.com>

groups (DOT) com

Sent: Sun, April 18, 2010 10:54:53 AM

Subject: RE: New Here

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

[Guest guest]

Yeah I know in theory but I haven't seen any studies more recent showing major

improvements so all I've seen are several years old.

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Sun, April 18, 2010 11:53:13 AM

Subject: Re: New Here

I have to find the article but..... with treatment the risks are greatly

reduced.....m You have to realize that most of the studies and treatments are

relatively new. So many of the old studies are based on people who were getting

IM Gamma globulin that is not a consistent delivery to protect the body from the

organ damage and chronic illnesses that the last generation endured. I

personally believe the outlook is MUCH brighter based on IV and SubQ Ig

replacement for our kids that are diagnosed now rather than later and we prevent

the complications.

BARBIE

________________________________

From: Madden <bluetaelon@...>

Sent: Sun, April 18, 2010 11:01:17 AM

Subject: Re: New Here

There's a large increase in cancer and mortality rates with CVID:(

____________ _________ _________ __

From: Hobbs <hobbsfamily@ indy.rr.com>

groups (DOT) com

Sent: Sun, April 18, 2010 10:54:53 AM

Subject: RE: New Here

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

[Guest guest]

Yeah I know in theory but I haven't seen any studies more recent showing major

improvements so all I've seen are several years old.

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Sun, April 18, 2010 11:53:13 AM

Subject: Re: New Here

I have to find the article but..... with treatment the risks are greatly

reduced.....m You have to realize that most of the studies and treatments are

relatively new. So many of the old studies are based on people who were getting

IM Gamma globulin that is not a consistent delivery to protect the body from the

organ damage and chronic illnesses that the last generation endured. I

personally believe the outlook is MUCH brighter based on IV and SubQ Ig

replacement for our kids that are diagnosed now rather than later and we prevent

the complications.

BARBIE

________________________________

From: Madden <bluetaelon@...>

Sent: Sun, April 18, 2010 11:01:17 AM

Subject: Re: New Here

There's a large increase in cancer and mortality rates with CVID:(

____________ _________ _________ __

From: Hobbs <hobbsfamily@ indy.rr.com>

groups (DOT) com

Sent: Sun, April 18, 2010 10:54:53 AM

Subject: RE: New Here

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

[Guest guest]

I sent a Brochure from AAAAI but have not found the medical document yet that

gives actually " standards of care " for medical professionals. There were

specific guidelines as well as outcomes. I remember reading that life span is

NORMAL for those taking Gamma globulin. I will keep looking.

BARBIE

________________________________

From: Madden <bluetaelon@...>

Sent: Sun, April 18, 2010 1:26:36 PM

Subject: Re: New Here

Yeah I know in theory but I haven't seen any studies more recent showing major

improvements so all I've seen are several years old.

____________ _________ _________ __

From: Barbara Jimenez <mother5590 (DOT) com>

groups (DOT) com

Sent: Sun, April 18, 2010 11:53:13 AM

Subject: Re: New Here

I have to find the article but..... with treatment the risks are greatly

reduced..... m You have to realize that most of the studies and treatments are

relatively new. So many of the old studies are based on people who were getting

IM Gamma globulin that is not a consistent delivery to protect the body from the

organ damage and chronic illnesses that the last generation endured. I

personally believe the outlook is MUCH brighter based on IV and SubQ Ig

replacement for our kids that are diagnosed now rather than later and we prevent

the complications.

BARBIE

____________ _________ _________ __

From: Madden <bluetaelonatt (DOT) net>

groups (DOT) com

Sent: Sun, April 18, 2010 11:01:17 AM

Subject: Re: New Here

There's a large increase in cancer and mortality rates with CVID:(

____________ _________ _________ __

From: Hobbs <hobbsfamily@ indy.rr.com>

groups (DOT) com

Sent: Sun, April 18, 2010 10:54:53 AM

Subject: RE: New Here

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

[Guest guest]

do you mean mortality or morbidity?

There is an increased risk of lymphoma which is a type of cancer but not an

increased risk of cancer of all types.

http://www.clinimmsoc.org/meetings/2006/pid/presentations/cunningham-rundles_cha\

rlotte_didactic.pdf

page 19

Ursula

Mom to (17) and Macey (14)

Macey's Caringbridge site

Macey's Blog

________________________________

From: Madden <bluetaelon@...>

Sent: Sun, April 18, 2010 2:01:17 PM

Subject: Re: New Here

There's a large increase in cancer and mortality rates with CVID:(

____________ _________ _________ __

From: Hobbs <hobbsfamily@ indy.rr.com>

groups (DOT) com

Sent: Sun, April 18, 2010 10:54:53 AM

Subject: RE: New Here

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

[Guest guest]

do you mean mortality or morbidity?

There is an increased risk of lymphoma which is a type of cancer but not an

increased risk of cancer of all types.

http://www.clinimmsoc.org/meetings/2006/pid/presentations/cunningham-rundles_cha\

rlotte_didactic.pdf

page 19

Ursula

Mom to (17) and Macey (14)

Macey's Caringbridge site

Macey's Blog

________________________________

From: Madden <bluetaelon@...>

Sent: Sun, April 18, 2010 2:01:17 PM

Subject: Re: New Here

There's a large increase in cancer and mortality rates with CVID:(

____________ _________ _________ __

From: Hobbs <hobbsfamily@ indy.rr.com>

groups (DOT) com

Sent: Sun, April 18, 2010 10:54:53 AM

Subject: RE: New Here

Honestly, I have never heard the link between CVID and cancer. Has anyone

else?

[Guest guest]

Hi ,

The only suggestion that I can think of would be this: have you tried getting

him to " design " his own room. That is, getting him to make it in a way that

would make him feel comfortable in the room. Maybe he would like certain

pictures of something, or a partciular colour on the walls, things like that. My

son is only 9, but he had the same trouble when I split him and his older

brother up to give them separate rooms. He slept on the lounge for about six

months before we were able to work things out for him.

Just an idea. I hope it helps.

Judy

> <mitowolf65@...> wrote:

>

> I have a 15 yr old on the spectrum, he is terrified of his bedroom and

> has actually never slept in his room, not even as a toddler or child.

> he is now 15 and we are moving to anew house and I would love to se him

> be able to get off the living room couch and enjoy a bedroom of his own

> any ideas?

> he has to have the tv on and be in a open room, he says he feels trapped

> in a bedroom.

> so far we have tried, no drapes, no bedroom door, a open bedroom door,

> tv on in the bedroom, a night light, the bedroom light on, and

> therapy...all to no avail....any other thoughts???

> the sad part, I am ok with him being in the living room...one I would

> just love for him to have his own private space but worse, my fiance

> says he wants him in a room...ugh ( he does not get his autism )

>

[Guest guest]

I would try finding the most open room possible, and set it up like a living

room. Tell him you are giving him his own living room. Put a couch in it

instead of a bed, tv, etc. Anything you can do to make it like a livingroom and

let him help decorate in any way possible. I remember my brother was completely

neurotypical but preferred sleeping on a couch well throughout his high school

years. I personally don't think it's a big deal, but I would definitely try to

help him feel comfortable in his own space.

>

> I have a 15 yr old on the spectrum, he is terrified of his bedroom and has

actually never slept in his room, not even as a toddler or child. he is now 15

and we are moving to anew house and I would love to se him be able to get off

the living room couch and enjoy a bedroom of his own any ideas?

> he has to have the tv on and be in a open room, he says he feels trapped in a

bedroom.

> so far we have tried, no drapes, no bedroom door, a open bedroom door, tv on

in the bedroom, a night light, the bedroom light on, and therapy...all to no

avail....any other thoughts???

> the sad part, I am ok with him being in the living room...one I would just

love for him to have his own private space but worse, my fiance says he wants

him in a room...ugh ( he does not get his autism )

>

>

[Guest guest]

Bad move . The fiance needs to be 100% behind your son and you. If he

does not get your son's autism, tell hime to leave and only come back once he

figures it out.

Daly

>

> I have a 15 yr old on the spectrum, he is terrified of his bedroom and has

actually never slept in his room, not even as a toddler or child. he is now 15

and we are moving to anew house and I would love to se him be able to get off

the living room couch and enjoy a bedroom of his own any ideas?

> he has to have the tv on and be in a open room, he says he feels trapped in a

bedroom.

> so far we have tried, no drapes, no bedroom door, a open bedroom door, tv on

in the bedroom, a night light, the bedroom light on, and therapy...all to no

avail....any other thoughts???

> the sad part, I am ok with him being in the living room...one I would just

love for him to have his own private space but worse, my fiance says he wants

him in a room...ugh ( he does not get his autism )

>

>

[Guest guest]

Have you tried putting a couch in his bedroom?Sent on the Sprint® Now Network from my BlackBerry®From: "" <rose6072004@...>Date: Sat, 05 Jun 2010 12:06:51 -0000<Autism and Aspergers Treatment >Subject: Re: new here Bad move . The fiance needs to be 100% behind your son and you. If he does not get your son's autism, tell hime to leave and only come back once he figures it out. Daly>> I have a 15 yr old on the spectrum, he is terrified of his bedroom and has actually never slept in his room, not even as a toddler or child. he is now 15 and we are moving to anew house and I would love to se him be able to get off the living room couch and enjoy a bedroom of his own any ideas?> he has to have the tv on and be in a open room, he says he feels trapped in a bedroom.> so far we have tried, no drapes, no bedroom door, a open bedroom door, tv on in the bedroom, a night light, the bedroom light on, and therapy...all to no avail....any other thoughts???> the sad part, I am ok with him being in the living room...one I would just love for him to have his own private space but worse, my fiance says he wants him in a room...ugh ( he does not get his autism )> >

[Guest guest]

i agree.if the fiancee does not understand the son , how can he become part of

the family?

> >

> > I have a 15 yr old on the spectrum, he is terrified of his bedroom and has

actually never slept in his room, not even as a toddler or child. he is now 15

and we are moving to anew house and I would love to se him be able to get off

the living room couch and enjoy a bedroom of his own any ideas?

> > he has to have the tv on and be in a open room, he says he feels trapped in

a bedroom.

> > so far we have tried, no drapes, no bedroom door, a open bedroom door, tv on

in the bedroom, a night light, the bedroom light on, and therapy...all to no

avail....any other thoughts???

> > the sad part, I am ok with him being in the living room...one I would just

love for him to have his own private space but worse, my fiance says he wants

him in a room...ugh ( he does not get his autism )

> >

> >

>

[Guest guest]

Hello Nicki, welcome! Hopefully your child will be self resolving, but if not, you are so exactly on the right path!

One thing that most casting docs will need is an MRI to rule out other conditions. A lot of us here would recommend both a brain and spine MRI at the same time, so that you don't have to do 2. Have you read the Mehta paper yet? I don't know if there is a hard and fast rule on when to do casting. The RVAD angle is key, too. It is usually pretty clear when a case is progressing, and the worst thing to do is watch and wait...without acting. You are in the exact right place to not do that, kudos to you as a wonderful parent and advocate for your child!

Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: nodonnell20 <nodonnell20@...>infantile scoliosis treatment Sent: Mon, July 12, 2010 6:06:00 PMSubject: new here

Hello! I feel fortunate to have found all of you parents! My name is Nicki and I have a 9 mo old son who we are in the process of diagnosing with scoliosis. I am a physical therapist so I was shcoked to see a rib hump on the left side of my son in the bath tub one night. I knew immediatly it was scoliosis but I had some resistance from his pedi. She reluctantly ordered an xray at the visit that we FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after she talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an xray. Today was the redo (he is now 9 mo old) and his COBB was 14. When we got the results of xray #1 I immedialty called boston children hospital and made an appt knowing it would be a long wait to get in. That appt is now 3 weeks away and its with a pediatric ortho. Our pedi wants us to follow up with the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on a callback from her after

she speaks with him about the 14 degree results. Does anyone have any insight? I feel very fortunate that i caught this, where I think is, early. I have been doing research and saw Dr Rubery in Rochester NY... is it too early to see him about this toot? At what point do they consider casting? Thanks in advance!