Thanks Betty and a Question

[Guest guest]

The last of the 3 of us got the orders, officially to re-start SCiG. Our 9 year

old, with combined deficiency, has a strange problem. She has low memory B

cells, low activated T cells, Selective AB defiency, has had an elevated ANA of

greater than 1:1280 since she was 4, and chronic neutropenia. Her neutrophil

count hovers around 1200 when she is well, and drops to critical range when she

is sick. She develops patches on her tongue that appear like " bald " spots.

This happens almost constantly now and will clear up for a few days, only to

return. When this happens, she is exhausted. Recently, I sent a picture of it

to her immunologist and he feels it is the result of her neutropenia. The other

ongoing issue is hair loss. For the past couple of years, we noticed that,

after a bath, the tub is filled with her hair. This issue has been discounted

in the past, but now, she has bald spots on the front of her hair line where it

looks like her hairling is recessing and sh She has an area, about 2 inches

square, where her hair has broken off to be only about an inch long. At first,

I thought she cut her hair.....but she did not. I am baffled....docs cannot

explain. I did some reading this morning and saw that hair loss can happen with

chronic neutropenia. I have a feeling, if I ran this by her new immunologist,

he would likely agree. Does anyone else have a child with this issue? She will

be starting back up on immunoglobin next week, after the scripts are all

processed, and if this does not help her, in terms of energy levels and

wellness, they are thinking about adding neupogen to the mix.