savannah

[Guest guest]

Let me bounce something here, and someone tell me if this sounds

familiar. My savannah, age 8, was a screamy baby. Till she learned to

talk, when she started complaining of tummy aches all the time. We did

allergy testing, found a milk allergy, and took her off milk. thru-out

that time she would fairly frequently throw up for no reason, I mean,

she wasnt sick, and she would just vomit and be fine within a few

minutes and not do it again. When she was 6, we found the asthma and

assumed, due to my sons history, the tummy aches were reflux. They

continued to get worse, last yr we went again for allergy testing.

Allergic to eggs. Eliminated eggs from diet. And I mean,whole hog, I

am vigilant about her food. Three weeks ago, she started out in the

usual way her tummy aches do, in the morning I gave her her nexium,

and we went shopping. It got worse, I bought her some tums, those

sometimes help.(plus for calcium). About an hr later, she climbed in

the cart and started screaming about her stomach. Ifelt her and she

was hot, took her to er and they couldnt find anything. She had

xrays, and urinalysis. the following week, I took her to the family dr

b/c she still had the stomach ache, though the fever broke within a

day. Family dr sent her out for ct scan which was normal. Since the

pain and fever set off her asthma, I called her pulmo, since we had

just started with the lung percussion and I wasnt sure how to use it,

and told her. She had her admitted for a ph probe, just to see how the

reflux was. Surprise!!She doesnt have any reflux. NONE. did an GI.

series. perfect. Gi drs came in and thought she sounded perfect for

celiac, so last week she had an endoscopy with biopsy to test for

celiac or EE. Got the call today that it was all normal. What are we

missing? this child will wake in the night with stomach pain, double

over in the middle of favorite meals with aches, something must be

wrong. I was just wondering if it could relate at all to immune def in

any way---she has very, very severe asthma and they keep trying to

test for CF, but she doesnt sweat enough--and we may do the dna at the

next dr visit in feb. She doesnt present like normal asthma,she pools

mucous in her small airways and it gets stuck, and its all downhill

from there. She is now def in all globulins except E. Can anyone help?

[Guest guest]

osdbmom wrote:

from dale,

To Savannah's Mom: My daughter has severe GI problems. That was her

initial complaint that led us to finally diagnose the PID. Doctors were

never able to give us a satisfactory answer to what caused her vomiting,

diarrhea, bloating and just pain, pain, pain. But.... after she started

on IVIG, because she was low IgG, IgA, IgM, IgD and IgE -- her gut

started settling down. After a couple of years on IVIG, she was able to

reintroduce milk with and fats and all the other things she had been

unable to digest. So... if you are asking does PID cause gut stuff --

yes. If you are asking how it causes gut stuff -- all I can tell you is

that some doctors think that because of the low IgA in her gut, food is

attacked as foreign. But I think that's just a shot in the dark because

no one really knows.

Is your daughter on IgG replacement?

Hope that helps,

In His service,

Dale

[Guest guest]

In a message dated 1/25/2006 6:15:44 AM Central Standard Time,

osdbmom@... writes:

> I appreciate your understanding. I am on the fence about IVIG. I WANT

> it, I am just scared of it

Valarie:

I had to tell you what happened with us. I felt exactly the same way when

was first diagnosed, I wanted her better but was scared of IVIG. I told

the

immuno I wanted to wait until she was two, I wanted to do some research. She

did NOT approve. We kept isolated for the next few months while I

researched, joined this group, and decided IVIG was our best shot at good health

for

her. She turned two, we re-did the bloodwork and I was anxious to get her

started on IVIG to help her. Her IgG was suddenly in the low 500s and the

ID/Immuno said she was " no longer a candidate " for IVIG. I was floored! What

about

the antibody problems?

I spend the next four years kicking myself for not starting IVIG when they

wanted us to, because she was sick so much and the ID/Immuno did not care at

all, didn't really want to hear it unless she got meningitis again.

In hindsight, I still don't know if it was the right decision or not, because

she's having a GREAT year. Part of me hopes she's outgrowing it, part wants

to be cautious at being so optimistic, because I'll be crushed if she goes back

to her average (crummy) level of infection.

I realize this probably doesn't help you much! I guess I just wanted to say I

was scared of it too, then did a lot of research and decided it was a good

thing.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)