What did you bring to immunologist appointment?

[Guest guest]

I'm still trying to seek some advice. I have been doing a lot of reading an

immune issues... and I'm still pretty convinced my daughter does not have

THI.

Just a little background. She will be 4 in May. She is 100% G-tube fed. She

has a gain in Chromosome 12q13.31 (so do I) she has an unspecified metabolic

syndrome, and an unidentifiable genetic syndrome, possible mitochondrial

disorder, possible variant to a Fatty Acid Oxidation Disorder.. ya, lots of

unknowns.

She was Failure to Thrive she weighs 31lbs

Globally developmentally delayed

She got multiple stomach and upper respiratory infections as a baby. Ear

infections, sinus infections, RSV, Broncholitis.

She had her tonsils and adenoids removed at 28 months of age.

She has MRSA (colonized with it)

Eczema and or unknown rashes.

She gets yeast infections or what I call acid a$$ from antibiotics.

We have not needed to do any kind of breathing treatments since March. She

allegedly has no allergies as her IgE levels are low. Though she had no

reaction from the control on skin test, but blood tests no allergies show..

which is odd, the whole family has severe allergies and putting food down

her g-tube makes her throw up.

She has had many abscesses this year at her g-tube site, she had surgery on

12/3 to remove and it's growing back already.

She has had many UTI's - e. coli

She has had c.diff on two occasions

She has had ulcers inside her tummy.

She has had unexplained hemoccult in her stool - normal colonscopy and

endoscopies

When she gets sick - head cold - it lasts for weeks everything else lands

her in the hospital for a minimum of several days to the longest being 29

days.

Infections throw my daughter into metabolic crisis resulting in

hospitalization with D10 support and changing her g-tube feeds to slow and

continuous to keep her from vomiting and creating more ketones.

Her IgA and IgG levels were normal or borderline low until she was 2. IgA

has been deficient since 9/08 and IgG has decreased since 9/08, it was 512.

8/09 it was 409, this month it was 418. In August she had been throwing up

and diarrhea for several weeks. Her IgM is normal.

She has a lot more issues, but none that are probably relevant.

I have to wonder about the slight changes in IgG the last couple of months,

but a good decrease IMO from last year. Is this normal?

So right now I'm wondering do I bring all urine and plasma labs I have

record of? I have almost all her admission and discharge papers. This

immunologist I chose for a second opinion is also board certified in

Internal medicine. Any advice again would be greatly appreciated.

Mom to Reiley