(No subject)

[Guest guest]

Hi everyone!

My admiration for the parents in this group grows daily. I took today

for more bloodwork to find out if he had a good response to his 2nd Tetanus

vaccine (response to first vaccine wasn't good) and to the Pneumovax.

has not been as ill to need hospitalizations etc. and probably wouldn't be

being tested if it wasn't for my diagnosis. He is continually sick but they

are treatable with antibiotics which I hate him being on, but I haven't had

to deal with hospitalizations or lots of iv's or blood drawn.

So, I feel like I don't have much right to complain, but it was really hard

to get the blood out of him and he cried so much and told them to stop. It

was the pits. And, the phlebotomist wasn't used to kids b/c I had it done at

a local hospital rather than subject Sam to a 2 hour drive to the Children's

Hospital, so at the end, he said 'i stopped early so I hope I got enough

blood'. Of course that made me upset, because, if they didn't, I have to

drive Sam 2 hours and get him stuck again. So, i'm not thrilled. Tomorrow,

I'm driving the blood (it's in the refrigerator now - kind of gross, huh?)

down to the hospital where the doctor will send it off and then it's a 3 week

wait for results. And, honestly, I'm scared about the results. I know you all

have been doing the IVIG with your kids for months and years, but I dread

having to have him stuck all those times. But, if it works and helps him, I

should be grateful.

Can anyone relate to this?????

Anne - CVID, mother of Sam (IgA deficient, CVID? or Specific Antibody

Deficiency?)

[Guest guest]

Dear Anne,

Of course we can all relate. My son is 10 years old, when he was about

2 1/2 he started receiving IVIG. The Doc that first prescribed it for him

was a hematologist (blood doc). The way they figured out it was time for

Jake to have another treatment was to subject him to weekly blood draws. As

you can imagine he hated this as much as I did. One time I was trying to

potty train him and forgot he had his big boy pants on and he pee'ed all over

me.

As I said he is now 10 years old and refuses to get a port. A couple of

weeks ago they had to stick him 4 times. His blood pressure and I am sure

mine was through the roof. I don't think it ever gets easier.

I really feel your pain. It is never ever easy to put your child through any

of this, except for the good days when they can run and play like all the

other normal kids. We try our best to let the kids (I have 2 with this) lead

a normal life. If you call IVIG every 2 weeks and 's 4 surgeries

since Jan. normal. Anyway Keep the faith and God will get you threw

it..........

Warmest regards..........

Sue Mom to Jake (10) and (6)

[Guest guest]

Thanks, Sue

Sometimes I just feel guilty complaining when my child has not been as sick

as some of the members.... thanks for your support.

Anne

[Guest guest]

Dear Autumn: I am glad to hear that did well during his surgery. And

that his breathing held out well. Are you getting enough rest ? I will

keep him in our prayers that his biopsies come back good.

Take care,

annette mom to alissa cvid asthmatic

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>CC: scidmail@...

>Subject: Re: (no subject)

>Date: Thu, 17 Jun 1999 22:27:20 EDT

>

>From: Autti@...

>

>from Autumn (mom to Mark Cd5-Cd19 PID/ A1A, GERD, Samter's syndrome)

>

>Just to let you all know, did fine with his surgery/procedure today.

>GI

>showed us several pictures of 's esophagus....very inflamed and

>streaked

>with inflammation/disease from the reflux-GERD. The biopsies will be back

>by

>the 28th. They also checked him for bacteria overgrowth since he is an

>antibiotics all the time and has chronic belly pain. There was talk of the

>Nisson again, not a pleasant conversation. GI decided that they want to do

>another pH Probe this time while on medications to see if he still refluxes

>as bad as the last time the probe was done. We are to schedule it for

>midsummer.

>

>ENT told us that there was a lot of pus, a lot of scar tissue and a lot of

>swelling. They did not do as much as they wanted to because they felt that

>the scar tissue would get worse. 's scar tissue is from a combination

>of

>sinus disease and previous surgeries. 's breathing held out

>fine...they

>did have to give him some extra medication, however.

>

>Thanks to all those who have called or sent email. I will try to get back

>with all of you as soon as things are more settled...which should be

>tomorrow

>)

>

>------------------------------------------------------------------------

>Looking to expand your world?

>http://www.onelist.com

>ONElist has 170,000 e-mail communities from which to choose!

>------------------------------------------------------------------------

>This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

[Guest guest]

Autumn,

Glad to hear everything went well with 's surgery. I hope you are able

to get the much needed rest that you deserve. Let us know when you get any

information on the biopsies.

Ursula,

I thought Cassie's tonsils were the weird ones. She also has very small

tonsils. Every time we visit the doctors, they all comment on the tiny

tonsils. Her adenoids are also enlarged. But, we have not had to have them

removed yet. I am glad to hear Macey's infusion went well. We also had a

very good infusion last week. Only one stick, as opposed to last months

where they were trying anything to access the vein. Here's praying for

continued good visits!!!

Belinda Rose,

mom to Cassie, igg immunodefficient, chronic sinusitis, asthma

[Guest guest]

Amber good luck. make sure you have their most recent Ig numbers. ask how

often these will be repeated (routinely or as illnesses develop). Good luck

and let us know if he has anything new to say.

Ursula Holleman

Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left

kidney reflux, Sensory Integration Disorder)

ICQ # 28592349

http://www.icq.com

PedPID email list archives

http://www.netpage.org/PedPID/_PedPID/

PedPID email list introductions

http://www.netpage.org/PedPID/_PedPID/introduction.htm

(no subject)

Hi everyone,

Well we are doing really well here right now. Kelsey is on day 10 with no

antibiotics and still no sign of infection. YAaaaaaa! I even let her go to a

birthday party. Keiras tubes seem to be doing the trick and she also has had

no infections for almost 3 weeks. This is a big change for us and hopefully

one that lasts.

I have a question for all you with experience. I have a meeting with the

girls immunologist tomorrow and i had a huge list of questions on my

computer but we got a new computer and dh deleted the old without asking me.

Anyway i cant think of any of the wonderful questions i had written down.

What are some things that would be a good idea for me to know?

Amber

[Guest guest]

We are off for a week vacation to Mackinac Island and then our family

cottage. I just wanted to comment to a few people. I will fill you in on

Mark when we return. Not great news, but we will cope.

Ursula...what is DI? Hope you get some answers soon.

Helen...Thinking of you!!

Welcome to all the new members!!!

Have a safe and Happy Fourth of July!!!

Autumn (mom to Mark Cd5-Cd19 PID/ GERD, Samter's, A1A)

[Guest guest]

Hi annette,

Thanks for the reply. I actually sent the meaasge to the wrong list but

hey.LOL. Kelsey is doing well, just when i think she is getting sick she

starts to fight it. Yaaaaa. It is very odd to say that but i am ovberjoyed

to be able to. She goes for another infusion tomorrow so wish us luck. She

did really well last time.

Amber

(no subject)

>>Date: Tue, 6 Jul 1999 09:42:50 -0000

>>

>>Hi everyone,

>> Glad to see some of you are back. It has been lonley on here! LOL Noreen

>>i am sorry to hear about your pregnancy. Lee ann let us know how ethan is.

>> Today kelsey has a runny nose. we will see what happens it should be

>>intresting. Today is 21 days since her last infusion and that iis how long

>>it lasts. She has her next one on thurs. I think it is cool just thinking

>>she may actually fight it! LOL.

>> We dident do alot this weekend. Went to the outlet mall yesterday that

>>was fun. Bugal boy had a huge sale. Nice boys shirts for 3.00 so i got a

>>few for gifts.

>> It is nice a warm today but getting too warm for me. It is a pain having

>>to watch how much i go in the sun! LOL.

>> Well hope everyone who isent back is having a great time.

>>Amber

>

>

>---------------------------

[Guest guest]

Dear Amber: Good luck with the infusion. Ours was a little bit better this

time but the sticks get harder to deal with each time. The EMLA cream did

not get put on for enough time prior. (Mom's mistake). Alissa is starting to

fight some things but I still take her in to the peds like tomorrow morning.

Guess I am over protective of her still. Her cough is getting worse. and you

know how that goes.

Take care and have a good evening.

God Bless

annette mom to alissa cvid,asthmatic

>

>Reply-To: PedPIDonelist

>To: <PedPIDonelist>

>Subject: Re: (no subject)

>Date: Wed, 7 Jul 1999 12:46:09 -0000

>

>

>

>Hi annette,

> Thanks for the reply. I actually sent the meaasge to the wrong list but

>hey.LOL. Kelsey is doing well, just when i think she is getting sick she

>starts to fight it. Yaaaaa. It is very odd to say that but i am ovberjoyed

>to be able to. She goes for another infusion tomorrow so wish us luck. She

>did really well last time.

>Amber

> (no subject)

> >>Date: Tue, 6 Jul 1999 09:42:50 -0000

> >>

> >>Hi everyone,

> >> Glad to see some of you are back. It has been lonley on here! LOL

>Noreen

> >>i am sorry to hear about your pregnancy. Lee ann let us know how ethan

>is.

> >> Today kelsey has a runny nose. we will see what happens it should be

> >>intresting. Today is 21 days since her last infusion and that iis how

>long

> >>it lasts. She has her next one on thurs. I think it is cool just

>thinking

> >>she may actually fight it! LOL.

> >> We dident do alot this weekend. Went to the outlet mall yesterday that

> >>was fun. Bugal boy had a huge sale. Nice boys shirts for 3.00 so i got a

> >>few for gifts.

> >> It is nice a warm today but getting too warm for me. It is a pain

>having

> >>to watch how much i go in the sun! LOL.

> >> Well hope everyone who isent back is having a great time.

> >>Amber

> >

> >

> >---------------------------

[Guest guest]

Sorry to hear alissa is having a hard time. Kelsey had a port placed before

we even started the IVIG b/c she was so afriad of needles that she was far

too tramatised already. We use emla over the port and it seems to work

really well. Last infusion went so well i was surprised. She has been seeing

a play therapist to deal with all the treatments and docs and it seems to

all be comming together finally. I hope i can hear the same from you soon.

Amber

(no subject)

>> >>Date: Tue, 6 Jul 1999 09:42:50 -0000

>> >>

>> >>Hi everyone,

>> >> Glad to see some of you are back. It has been lonley on here! LOL

>>Noreen

>> >>i am sorry to hear about your pregnancy. Lee ann let us know how ethan

>>is.

>> >> Today kelsey has a runny nose. we will see what happens it should be

>> >>intresting. Today is 21 days since her last infusion and that iis how

>>long

>> >>it lasts. She has her next one on thurs. I think it is cool just

>>thinking

>> >>she may actually fight it! LOL.

>> >> We dident do alot this weekend. Went to the outlet mall yesterday

that

>> >>was fun. Bugal boy had a huge sale. Nice boys shirts for 3.00 so i got

a

>> >>few for gifts.

>> >> It is nice a warm today but getting too warm for me. It is a pain

>>having

>> >>to watch how much i go in the sun! LOL.

>> >> Well hope everyone who isent back is having a great time.

>> >>Amber

>> >

>> >

>> >---------------------------

[Guest guest]

Tracey

That is FANTASTIC!!!! Hip hip hooray for david. Bet it gave you goose

bumps when he said that. Your a great mom. Keep up the good work.

--- Scholz wrote:

>

>

> Hi everyone (addressed to everyone because this is

> going out to more than

> one person),

> Well, I just had to write and share some really

> happy news. and I

> were playing/therapy last night and he was really

> getting into it and well,

> he made the sounds goo, daa, and baaa several times.

> I know it doesn't

> sound like much, but this was a first for him and as

> many of you know, he

> turned 14 months old yesterday. I have been waiting

> to hear these types of

> sounds out of him for ages. It kinda gives me more

> hope that he will be

> verbal when he gets older.

>

> Anyhoooo, just felt like announcing it to the world

> today, hahahaha!!!

>

> Toodles for now!!

>

> , wife to Preston, mother to Shelbie 8, Mandy 3

> and 13 months

> Moderator of Military EFMs, IVH-Hydrocephalus,

> NewView and NICU Families

> Registered Chat for Preemies Friends and Family.

>

----------------------------------------------------------------------------

> ----------------------------------------------

> HEART-----Heart, intellect, awareness, mind, inner

> person, inner feelings,

> deepest thoughts, inner self.

>

>

>

> ---------------------------

[Guest guest]

: I am glad to know that I was not the only mom that started her

kid out on pill or tablets from three years on. She would not take a

suspension to this day. We also are great believers in acidolpholus. I

believe it has kept the c-diff away from her. Hugs to both Zach and .

God bless

annette mom to alissa cvid,asthmatic

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: (no subject)

>Date: Tue, 27 Jul 1999 10:48:58 -0500

>

>

>

>,

>

>'s been on meds for ear, lung and sinus infection. He's constantly on

>the

>long-term antibiotic, but continues to get sick. That is when they boost

>him up

>to the stronger meds.

>He just started the acidophalus last week.

>

> Hrib-Karpinski wrote:

>

> > , What's on the antibiotic for? Unfortunately most of our

>kids

> > need longer & stronger doses that the average child. If we have

>something

> > going on, our Dr. doesn't even mess w/the 10 days, we get at least 21

>days.

> > Also,one important thing. Do you give any acidophalus or any other

> > intestinal flora? I think that 90-100% of the PID kids uses it & I

>highly

> > reccomend it. When on any antibiotics, they eat away at all the " good

> > bacteria " in the stomach & the intestines. Which can cause many bad

> > complications later on. His vomiting may actually be real not forced.

> > acidphallis can possibly help that too.

> >

> > Also, when Zach was little, he hated some of the meds, so I would ask

>for

> > tablets(be sure to tell them you'll be crushing). I got a mortor &

>pesto

> > from a kitchen store, & I crushed his meds & mixed them in 1 tsp of

> > strawberry applesauce. This made life so much easier!!! And Zach was

>able

> > to swallow pills by about 3 or 3 1/2, so then life became much easier.

> >

> > Let us know how things are going.

> >

> > PS when you send a reply, send it it PedPIDonelist that way all the

> > people on the list can read it too. We all seem to benefit from each

> > other's posts. And usually we'll get 6 or 8 talking about the same

>things.

> > I have been so greatful of this list. It has helped us tremendously.

> >

> > Hugs to .

> >

> >

>

>

>---------------------------

[Guest guest]

Thanks Becky. It's so frustrating. 's dad died when he was 31/2 months old,

so it's just me to deal with it all. I love him with all my heart and soul, but

there are times that I would love to say, " Here dad, you care for him a

while while I take a breather " . Unfortunately I can't do that. I also work

full-time, so that just adds to the worry and frustration. I try not to have a

pity party, and usually I do pretty well, but there are those days.

becky meadows wrote:

>

>

> Hi , we really have alot in common. My son Ben is 22 months old and he

> has been constantly sick with one thing or another. Chronic diarrhea,

> pneumonia, pneumonitis, ear infections that won't clear up, respiratory

> infections, etc. He also has asthma. The ped said he has

> hypogammaglobulinism. I learned a little about it under the name Common

> Variable Immunodeficiency (CVID). I asked about it, she said she kind of

> considers it the same thing. After so many courses of antibiotics I finally

> said let's get more agressive about this. So she sent me to a

> gastroenterologist and an Immunologist. She we have got most of the tests

> done, waiting for the next appts. to get their opinions. Ben doesn't get

> IVIG, unlike alot of the kids here, at least not yet. So I think we have

> some similiar things going on. The ped stays he'll " probably " outgrow it,

> but I worry too-what if he doesn't and what if I don't do all I can for him

> now? The questions we moms torture ourselves with, LOL. Anyway, anytime you

> want to talk I'm here, and their are some very knowledgable and friendly

> people here. Take care, Becky (mom to Ben, 22 mo. CVID, asthma)-----

> Original Message -----

>

> To: <PedPIDonelist>

> Sent: Thursday, July 29, 1999 9:16 AM

> Subject: (no subject)

>

> >

> >

> > Hello everyone.

> >

> > I started with this group because I was told that my son has an IGG

> > Deficiency. After reading comments over the last week or so, I see that

> > there is much more involved with this than I thought.

> > I trust my sons doctor, but I wonder if there is more to my sons

> > condition than either of us are aware of.

> > Let me give some history. He has had tubes in his ears that constantly

> > get clogged (chronic ear infections), throat, mouth (thrush), sinus and

> > lung infections since he was three months old. He is now almost 2. He's

> > been put on the long term antibiotics several times, but as soon as he

> > goes off them, he's sick again. We've checked allergies (milk, wheat,

> > cheese) and that was fine, checked for cystic fibrosis - negative, and

> > HIV - negative. The doctor said he'll probably grow out of it.

> > Have any of your children had these same symptoms, and it ended up being

> > something that your children won't grow out of? Should I just continue

> > doing what the ped. suggests (continue w/ antibiotics), and wait until

> > he's older to see if he grows out of it? or should I get him in to a

> > specialists? I know that seeing a specialist isn't a bad idea, but maybe

> > it is something that he'll grow out of and I should just give it a

> > while. I keep going back and forth with this. I know his problems are

> > small compared to some of you guys...or are they? All I know is it's so

> > hard to see my baby sick all the time and if theres more I can do to

> > help him...I don't want to do that.

> >

> > I know you guys are a support group, and not doctors, but I would really

> > like some input.

> >

> >

> >

> >

> > ---------------------------

[Guest guest]

Hi all,

It has been a rough week. I was in the hospital for surgery last week and am

now just getting enough energy to get up and walk around. I had to catch up

on all the e-mails. It took me forever.

: Your child sounds just like Cassie. As soon as we were off the

antibiotics, she would relapse into a worse infection than the one we

started. She finally was put on long term antibiotics at about 8 months. We

saw the immunologist at 11 months and was tested for allergies. Then we had

to go back to get all the vaccinations again. She was finally diagnosed with

hypogammaglobulinenemia (sp?). She started IVIG at 2 years old. It has been

a rough road, but we have overcome all the obstacles. Believe me, without

the IVIG, I know we would be worse off. I would strongly suggest seeing an

immunologist in your area to get some advice as to the course of treatment.

I pray that all goes well.

Ursula: Glad to hear Macey is doing well. Hope she has a good time at

school. Cassie starts in 4 more days. Keeping our fingers crossed!!!

To all: Hope everyone has a wonderful and safe weekend. God bless you all

for being there for all the emotional support that we all need sometimes.

Belinda Rose,

mom to Cassie, igg immunodefficient, asthma, chronic sinusitis. And now 4

days away from being a pre-kindergartener

[Guest guest]

Me three!!

, wife to Preston, mother to Shelbie 8, Mandy 3 and 14 months

Moderator of Military EFMs, IVH-Hydrocephalus, NewView and NICU Families

Registered Chat for Preemies Friends and Family.

----------------------------------------------------------------------------

----------------------------------------------

HEART-----Heart, intellect, awareness, mind, inner person, inner feelings,

deepest thoughts, inner self.

RE: (no subject)

>

>

>>I'm a Georgia Peach. :-)

>>

>>Ursula Holleman

>

> Me Too!

>

>Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific type) PID,

GERD,

>chronic sinusitis, IVIG,

>

>

>---------------------------

[Guest guest]

>I'm a Georgia Peach. :-)

>

>Ursula Holleman

Me Too!

Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG,

[Guest guest]

Hi ,

Yes, When I found out about this I too was in the same boat. Sort of

relieved to find out all the other " stuff " is linked, but also bummed. I

personally would approach like this...mind you I'm not a Dr. but I'm a mom

that's been dealing w/this for a long time...Yes indeed I would go see a

specialist. Find out from Gail if there is a good Immunologist in your

area. Don't buy the " just let it go theory " because he'll grow out of it.

Yes, he will probably will, but truth is that you have some serious things

that are happening now that need addressing. Don't treat the symptoms,

treat the cause. Does need to go through this if there's help out

there (IVIg)? I made many mistakes. Zach was my first & only child.

Everything I did in hindsight should have been done much more aggressively &

much earlier. Pat yourself on the back for seeing the red flags. But

there's nothing I can do about Zach's past, but I can turn my mistakes into

postitive experiences by helping others such as yourelf.

As for the allergy thing. Zach has never tested allergic to anything. But

he cannot digest dairy, soy or eggs. So if there's the sightest suspicion

about allergies, try taking Joy off from those foods. then try them back

one at a time. (Dairy took Zach about 3 or 4 months off before he stopped

vomiting, & personally I wouldn't waste time just going off lactose, go off

dairy completerly then when you add dairy back, just do lactose free back

for a couple weeks. That's from experience. The Dr's had us take Zach off

lactose for months to no avail & then when I cut out all dairy it did the

trick.) Keep a diary of everything that passes his lips and along with it,

track all aspects of health and behavior. Hyperactivity & irritability and

crankyness can be related to food intolerances. Boost up on the

acidophalis. That'll help the thrush and digestional tract. I strongly

encourage you to read through our archives. I know that you're reading at

work, but do you have a friend or family member that has a computer that you

could go over & use? Take there & pull an all nighter. Or just print

out the archives and read them at your leasure. Maybe if you tell your boss

you need to get the info, he/she'll let you do it durring your lunch.

As for the antibiotics, they're a mixed blessing too. They help keep our

children alive, but the long term effects can be nearly as bad. Zach is

finally for the first time in 6 years off from them. But his stomach has

paid it's dues.

I know that all of this can be very overwhelming. But you're in the right

place to help you through it all. If you would like, you (Or anyone else in

the group too) can call me , if you're worried about the toll,

I'll be glad to call you right back. The best time is usually after 9pm

EST. By then Zach's in bed & I'm free.

All the premilary tests have been done CF & HIV, now you've got to get to

the bottom of it all.

Best wishes,

Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG,

[Guest guest]

,

I totally know where you're coming from! What I would give to take away all

's pain and discomfort!

susan noonan wrote:

>

>

> -

>

> Poor little guy. I now what you mean though about our

> kids and doctors. Its sad to say that doesn't

> really flinch for her blood work. She has gotten it

> soo much. As a baby she went 2 times a week for 6

> weeks and everytime we got to the hospital doors she

> would cry non-stop. It was like that with the

> neupogen at first. he doesn't like it but now that

> she is 4 understands she feels better with it.

>

> She asked for the neupogen today. She isn't feeling

> well and said she needed it. Her ANC was 307 this am.

> She is fighting something. Ped thinks its just a

> cold. I guess we just have to wait it out.

>

> I just wish it was me going through this tham my

> daughter I am sure we all feel this way.

>

> God Bless

>

> ===

> and

> (congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

> mom to Evan 6, 4 and Abby Rose 2

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

-

Poor little guy. I now what you mean though about our

kids and doctors. Its sad to say that doesn't

really flinch for her blood work. She has gotten it

soo much. As a baby she went 2 times a week for 6

weeks and everytime we got to the hospital doors she

would cry non-stop. It was like that with the

neupogen at first. he doesn't like it but now that

she is 4 understands she feels better with it.

She asked for the neupogen today. She isn't feeling

well and said she needed it. Her ANC was 307 this am.

She is fighting something. Ped thinks its just a

cold. I guess we just have to wait it out.

I just wish it was me going through this tham my

daughter I am sure we all feel this way.

God Bless

===

and

(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

mom to Evan 6, 4 and Abby Rose 2

[Guest guest]

Dear Ursula: When I worked for a gastroenterologist, his definition was

inflammatory was just worse off shoot of IBS, which could be triggered by

emotions or foods that set off the cramping episodes. Either way a BRAT diet

was the answer when things got out of hand along with a good antispasmodic

to control the cramping,he also used fiber to control the either excessive

diaherrea or constipation going on. Hope that helps it kind of a simplistic

way of looking at it,

regards,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: <PedPIDonelist>

>Subject: RE: (no subject)

>Date: Sat, 13 Nov 1999 22:22:03 -0500

>

>Debbie - I'm operating completely under assumptions here but I guess the

>only way to judge severity would be to take xrays and look at any breakdown

>in joint fibers or muscle tissue. I as her mom go by what she keeps from

>using by choice or what she gripes about the most on any given day. Lately

>it's been her ankles and feet. The only thing we've ever seen swell or

>have

>the redness/fever is her fingers and ankles. We've thought lately of

>getting a strip thermometer and laying it across the joints to see if it

>would register any fever. May or may not pan out but we're grasping at

>straws until the workup is completed. Dr. Harville has gone to Arkansas to

>head up a BMT center. It was very nice having him work with this since he

>was also a ped rheumatologist but now it falls to our ped. The current

>immuno (Dean Firschein) agrees that PID's are predisposed to autoimmune

>problems but hasn't said much else. I know our ped will involve him in the

>final chit chat about all the decisions. If they decide that JRA is the

>problem then I'm sure the local rheumy (ped/adult guy) will be consulted.

>The ped has talked to us about how the usual med used for inflammation

>(Naproxen) is not a good one for her because it causes GI problems and she

>has a colorful GI history. So for now she gets Advil every 6 hrs. I'm

>hoping the aqua therapy starting this week helps (even though its meant to

>treat something completely different).

>

>Now, question from me. To Debbie or anyone.. What's the difference

>(besides positive pathology results) symptom-wise between Inflammatory

>Bowel

>and Irritable Bowel? My scopes always come back negative for Crohns and

>Celiac but I'm on 4 different meds (Librax, Doxepin, Sal-tropine, Kuzyme)

>for Irritable Bowel. Last GI appointment (Tuesday) I had finally gained a

>pound (107 now). Just curious.

>

>Ursula - & Macey (4 yr old w/CVID) mom

>

>

>

>------------------------------------------------------------------------

>This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

><< text3.html >>

[Guest guest]

I am new to the list, but have been keeping up the best I can the last few

days. We have had an earlier diagnosis of my daughter having a low IgA

count. She has had 4 sets of tubes, tonsils and adnoids are already gone,

she has ecezema, asthma, allergies and chronic sinus infections. Since

this spring we have also had problems with headaches and stomach problems.

They told me friday to start giving pepcid ac to her when she goes to bed.

The doctor also ordered a ct scan friday (second this year) and the

allergiest had 3 vials of blood drawn. I know I am no where near the

complications that most of you are, but can anyone offer any suggestions to

the headaches and stomach aches...thanks

Hill

At 12:48 PM 11/14/1999 -0700, you wrote:

>

>

>Dear Ursula: When I worked for a gastroenterologist, his definition was

>inflammatory was just worse off shoot of IBS, which could be triggered by

>emotions or foods that set off the cramping episodes. Either way a BRAT diet

>was the answer when things got out of hand along with a good antispasmodic

>to control the cramping,he also used fiber to control the either excessive

>diaherrea or constipation going on. Hope that helps it kind of a simplistic

>way of looking at it,

>regards,

>annette and alissa

>

>

>>

>>Reply-To: PedPIDonelist

>>To: <PedPIDonelist>

>>Subject: RE: (no subject)

>>Date: Sat, 13 Nov 1999 22:22:03 -0500

>>

>>Debbie - I'm operating completely under assumptions here but I guess the

>>only way to judge severity would be to take xrays and look at any breakdown

>>in joint fibers or muscle tissue. I as her mom go by what she keeps from

>>using by choice or what she gripes about the most on any given day. Lately

>>it's been her ankles and feet. The only thing we've ever seen swell or

>>have

>>the redness/fever is her fingers and ankles. We've thought lately of

>>getting a strip thermometer and laying it across the joints to see if it

>>would register any fever. May or may not pan out but we're grasping at

>>straws until the workup is completed. Dr. Harville has gone to Arkansas to

>>head up a BMT center. It was very nice having him work with this since he

>>was also a ped rheumatologist but now it falls to our ped. The current

>>immuno (Dean Firschein) agrees that PID's are predisposed to autoimmune

>>problems but hasn't said much else. I know our ped will involve him in the

>>final chit chat about all the decisions. If they decide that JRA is the

>>problem then I'm sure the local rheumy (ped/adult guy) will be consulted.

>>The ped has talked to us about how the usual med used for inflammation

>>(Naproxen) is not a good one for her because it causes GI problems and she

>>has a colorful GI history. So for now she gets Advil every 6 hrs. I'm

>>hoping the aqua therapy starting this week helps (even though its meant to

>>treat something completely different).

>>

>>Now, question from me. To Debbie or anyone.. What's the difference

>>(besides positive pathology results) symptom-wise between Inflammatory

>>Bowel

>>and Irritable Bowel? My scopes always come back negative for Crohns and

>>Celiac but I'm on 4 different meds (Librax, Doxepin, Sal-tropine, Kuzyme)

>>for Irritable Bowel. Last GI appointment (Tuesday) I had finally gained a

>>pound (107 now). Just curious.

>>

>>Ursula - & Macey (4 yr old w/CVID) mom

>>

>>

>>

>>------------------------------------------------------------------------

>>This forum is open to parents and caregivers of children diagnosed with a

>>Primary Immune Deficiency. Opinions or medical advice stated here are the

>>sole responsibility of the poster and should not be taken as professional

>>advice.

>><< text3.html >>

>

>>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

[Guest guest]

Hi ,

I can't help with the head aches and the stomach aches, but if your daughter

is having problems with excema I can help there. My son has had really bad

problems with it and we tried every steriod cream and ointment and even

broke down to using Crisco on his skin. None of these worked, but by

accident a few weeks ago, I came across a combo that seems to do the trick

and keep his skin really nice. I scrub his skin rash with Denorex with

conditioner shampoo 2-3 times a week and put Triamcenolone (sp?) once a day

one the rash. It has helped soooo much.

My 3.8 year old daughter Mandy has IgA deficiency and low overall IgG levels

but not bad enough to need treatment now (we caught her l little late). But

she too has had tubes placed and adnoids taken out. But is doing much

better these days. She hasn't really been too sick since Feb this year.

Now my 18 month old son (the one who has the excema problems, has low

everything except IgE because he has severe allergies. He gets IVIg

treatments every 4 weeks, and has improved alot since starting them in May.

It is when I started to research his diagnoses, Hypogammaglobulinemia, that

I discovered that my daughter had all of the classic signs of immune

problems and so we had her tested and found out that she is only about 180

below normal for the total Ig counts. My son, , also has a problem

keeping his ANC levels up. He normally hangs around 1200 with over 1500

being normal. But on occasion when we have blood work done, we find his

levels down to 600-700 so we are watching it.

Anyhow, that is a little about us and hopefully a little help with any

excema problems you might be having.

Welcome to the list if I haven't already said so!!

;o)

RE: (no subject)

>

>

>I am new to the list, but have been keeping up the best I can the last few

>days. We have had an earlier diagnosis of my daughter having a low IgA

>count. She has had 4 sets of tubes, tonsils and adnoids are already gone,

>she has ecezema, asthma, allergies and chronic sinus infections. Since

>this spring we have also had problems with headaches and stomach problems.

>They told me friday to start giving pepcid ac to her when she goes to bed.

>The doctor also ordered a ct scan friday (second this year) and the

>allergiest had 3 vials of blood drawn. I know I am no where near the

>complications that most of you are, but can anyone offer any suggestions to

>the headaches and stomach aches...thanks

> Hill

>

[Guest guest]

Ursula, I will try to remember as much as I can here....Lorin is 7, she had

had her 4th set of tubes right after she turned 4. She lost one set with a

severe ear infection (so much fluid draining it pushed them out). The

allergist has had me take her off milk products to help with the eczema,

but I still see spots on her face, faint but you can see them. The

psorasis is behind her ears, and if I don't keep up with it it can get to

wear it bleeds. the ct scan is on her sinus', if it comes back clear (last

time it didn't) we are supposed to look into the possibly of a type of

migraines, we have an appointment set up with the neuorolgist on the 8th of

Dec. Lorin takes singulair, claratin, flonase, intal on a regular basis,

her back up is proventil. She has been on prednisone 3 times this year for

a week at a time. The allergist suggested that I have Lorin get the flu

shot, but I am not sure about it. Kinda that mother gut feeling that it is

not a good idea. Maybe I am overeacting. I feel silly actually posting

this, compared to what I have read here we have it easy. Thanks for

listening though. It really helps to have someone who can understand.

Thanks again,

and Lorin

At 08:29 PM 11/14/1999 -0500, you wrote:

>

>

> - my daughter Macey is 4 yrs old. She's had two sets of tubes and

>her adenoids out (she has no tonsils that they can find). She also has

>eczema (which we use Elocon cream on and take Atarax at night for), asthma

>(on Flovent and Singulair) thankfully few if any allergies and has a history

>of sinus infections (on Vancenase and Atrovent) but also thankfully her last

>sinus CT in September was clear. How old is your daughter? Macey is on

>prescriptive Pepcid suspension right now because of a virus in October

>upsetting her system. But last year she was on it for GERD. I hope the

>Pepcid is able to help her. Macey takes it for stomach aches and

>distention. Let us know what the blood work shows. And good luck with the

>CT, is it of her stomach? Does she have any problems with diarrhea or

>constipation?

>

>Ursula - & Macey (4 yr old w/CVID) mom

>

>>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

[Guest guest]

Hi ..

Thanks for the tip, I have written it down and will pick it up the next

time I am at the drug store (probably by the end of the week)...I haven't

had much success with the steriod creams either!! That is what they keep

telling to put on Lorin's psorsis (sp) but it doesn't really help there

either.

Thanks again,

and Lorin

At 08:58 AM 11/15/1999 -0500, you wrote:

>

>

>Hi ,

>I can't help with the head aches and the stomach aches, but if your daughter

>is having problems with excema I can help there. My son has had really bad

>problems with it and we tried every steriod cream and ointment and even

>broke down to using Crisco on his skin. None of these worked, but by

>accident a few weeks ago, I came across a combo that seems to do the trick

>and keep his skin really nice. I scrub his skin rash with Denorex with

>conditioner shampoo 2-3 times a week and put Triamcenolone (sp?) once a day

>one the rash. It has helped soooo much.

>

>My 3.8 year old daughter Mandy has IgA deficiency and low overall IgG levels

>but not bad enough to need treatment now (we caught her l little late). But

>she too has had tubes placed and adnoids taken out. But is doing much

>better these days. She hasn't really been too sick since Feb this year.

>

>Now my 18 month old son (the one who has the excema problems, has low

>everything except IgE because he has severe allergies. He gets IVIg

>treatments every 4 weeks, and has improved alot since starting them in May.

>It is when I started to research his diagnoses, Hypogammaglobulinemia, that

>I discovered that my daughter had all of the classic signs of immune

>problems and so we had her tested and found out that she is only about 180

>below normal for the total Ig counts. My son, , also has a problem

>keeping his ANC levels up. He normally hangs around 1200 with over 1500

>being normal. But on occasion when we have blood work done, we find his

>levels down to 600-700 so we are watching it.

>

>Anyhow, that is a little about us and hopefully a little help with any

>excema problems you might be having.

>

>Welcome to the list if I haven't already said so!!

>

> ;o)

>

>

> RE: (no subject)

>

>

>>

>>

>>I am new to the list, but have been keeping up the best I can the last few

>>days. We have had an earlier diagnosis of my daughter having a low IgA

>>count. She has had 4 sets of tubes, tonsils and adnoids are already gone,

>>she has ecezema, asthma, allergies and chronic sinus infections. Since

>>this spring we have also had problems with headaches and stomach problems.

>>They told me friday to start giving pepcid ac to her when she goes to bed.

>>The doctor also ordered a ct scan friday (second this year) and the

>>allergiest had 3 vials of blood drawn. I know I am no where near the

>>complications that most of you are, but can anyone offer any suggestions to

>>the headaches and stomach aches...thanks

>> Hill

>>

>

>>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

[Guest guest]

Hi !

Welcome! I don't know if this will be any help or not, but my son used to

have constant stomach problems, a lot of pain, migraine headaches and many,

many ear infections. The doctors varied on the medication they gave him.

Often times we had to go to the hospital for the migraines in order for him

to receive a shot. I'm not sure what finally stopped the stomachaches or

migraines. He seemed to just outgrow them. Hang in there.

Lee