Re: Sandi/update

[Guest guest]

Sandi -

After my daughter started IVIG, it took her a few months to clear the primary

infection. At this point her energy level improved. Still, she struggled with

thrush, bad nights (body aches and horrible gut pain), and was chronically

tired. We took her to see a GI doc in Cincy who put her on the miralax

indefinitely - btw, good idea to consider a GI consult for . Where are

you located? There are slim pickings for GI docs (that " get " the immune stuff)

so you might want to touch base with our group first.

Anyway, it was another year of letting her gut heal. She still gets more tired

than the other kids (still has cycles of leg pain and gut stuff but it is

manageable) but only mom and dad notice.

I am wondering what 's IgG level is because, with all of his infections,

maybe his body is still very run down. Hardly moving off the couch is normal

for some teenagers but, clearly, you are talking about fatigue here (not " teen

behavior " ) and this is concerning. Sometimes, it is soooo difficult to tease

out the fatigue from the PID. You have to clear all of the infections and get

their IgG at a good level (this is individualized) before you really know what

is from what.

Fatigue can be a clinical sign of inadequate IgG for some kiddos (this can be

crushing fatigue at trough) and I am wondering if he might have better luck with

SCIG. Also, if he has not has his dose adjusted lately, you might want to look

into that -- my guess is that he is experiencing or heading into a major growth

spurt. Keeping nutrition up is really important as well. Certain vitamin,

mineral, protein deficiencies can make the fatigue worse (e.g., anemia). Out of

curiousity, what are his MCV and HCT?

I am glad to know that you are getting him treatment for the PID. You guys have

been through so much.

mom to CVIDer