Feedback wanted

[Guest guest]

Hi all,

We have been through six rounds of IVIG, and are due to see our immuno

next week. I want to run our current status by everyone and see if

anyone has feedback.

Haven't yet gotten back the latest round of testing. His initial

diagnosis is hypogam, but he does not appear to have an antibody

deficiency. The immuno has not yet run any T or B cell studies on

him-is that strange? He is IgG subclass deficient, all the other

numbers looked fine. His symptoms are severe fatigue, chronic skin

infections, difficulty gaining weight, chronic gut issues-undiagnosed,

severe food sensitivities, malabsorption.

He has chronic nausea and constipation.

Since going on IVIG his energy is better, he is up and about 75% of

the time now, although he is homeschooled and rests a lot of the time.

He would still not have enough energy to handle going to regular school.

He still has to save up energy for out-of-the-house activities.

The skin infections have not gotten any better on IVIG-he still gets

them about every 4-6 weeks, and has to go on antibiotics depending on

severity.

He seems to have the typical dip in energy/functioning around week 3-4

post infusion.

We are looking at getting a pill cam study done on his gut to see if

we can do anything for the gut issues. We have not yet seen a gastro,

but are scheduling to see one in January. Also we are trying thyroid

and adrenal medications, as he has been diagnosed with both low

thyroid and low adrenal function.

With the nausea, one doctor thought H.Pylori infection, the test came

back negative, and he said the tests aren't always accurate because

they were testing for antibodies. We have not treated for this.

He may have Lyme- we are going through the testing process for that.

Anyone think of anything we might be missing?

Thanks,

Cyndi