more stomach stuff

[Guest guest]

It seems that stomach issues are in the air. Something is going on with Maggie,

9 with CID that has become very worrisome. In December, she got a sinus

infection that took 6 weeks of antibiotics and re-starting Ig to clear. Once

finished with antibiotics, she has gotten worse. She still has sinus pain, a

sore throat (her GP has looked at her throat several times over the past month

and said it is very red), daily headaches that are bad, daily stomach aches that

she describes as someone stabbing her with a knife in her belly button, is

exhausted, has lost 6 pounds in 5 weeks, and her nodes in her neck are staying

enlarged. We have been consulting via email with her immunologist and her GP

has been emailing the immunologist. Together, they ordered a set of labs that

inclused checking to see if she is aborbing nutrients as she has a history of

issues with this and checking her CBC and chem panel to see if her neutrophils

and WBC have dropped (were already low) They are also re-checking her ANA

titers as she has been >1:1280 since she was 4. The GP is feeling overwhelmed

and said he does not feel comfortable managing her current issues and thinks it

would be best if we return her to Dr. S (the immunologist). We are waiting for

labs to come back tomorrow and will go from there in planning a trip.

Maggie was scoped top to bottom 3 years ago and they found that she had lymphoid

hyperplasia, a polyp in her decending colon, and small bowel bacterial

overgrowth. Prior to scoping her, we thought she had celiac's so we took her

off gluten and she seemed better. We had to put her back on for the scope and

they determined she did NOT have celiac. Several members of my family have

celiacs. The GI doc wanted to put her on Flagyl prophylaxis, but the

immunologist we had at the time said not to because she was already on

azithromyocin prophylaxis.

The wierd thing about all of this (and I am hoping someone can chime in on

this), is that we started seeing a pattern of her symptoms becoming extreme

after sugar consumption or simple carbohydrate consumption. So we took her off

all simple carbs and sugars and she was ok for a few days. Yesterday, we were

at a restaurant and allowed her to have ravioli and by last night, she was very

sick again. We are so concerned because she is extremely thin and is continuing

to lose weight. I read a bit about Fructose Malabsorption and am wondering if

she is having an issue with this. She seems much better if we follow the diet,

but then again I read that most people with any kind of GI condition improve

with a fructose/lactose/fructans free diet. Her GP does not understand how the

headaches are tied in, but my understanding is that if your gut is not working,

you start absorbing toxins from the bacterial overgrowth and the toxins produce

headaches.

It seems like this all kicked into high gear after the long exposure to

antibiotics and the illness sent her into a tail spin we cannot get her out of.

We tried nystatin and the raw areas on her tongue cleared, but the other issues

have continued. She has a T cell defect that includes unresponsiveness to

candida mitogen stim studies. We have put her on probiotics and are trying to

stick with the diet. But the bottom line is that he already too skinny body

cannot handle the calorie restriction of the diet. We are so worried about her.

It has been going on for weeks now and she is continuing to drop weight. I

talked to another mom last night with a child with PIDD and celiacs and she

recommended we try putter her on the paleo diet. I am looking at it now. But

gosh, when you look at foods at the store to buy, it is amazing how many things

have sugar in them.

Just don't know what to think about all this. She is in bed today because she

feels so bad. She laid on the floor during dance class last week and fell

asleep. She has had an issue with running neutrophils and WBC in critical range

in the past when she has been like this, but it has never lasted this long.

Sorry for the long post. We are really frustrated and concerned. It seems a few

of us are dealing with similar issues with our PIDDers.

Terri

Mom and both daughters with Combined Cellular and Humoral Immune Deficiency