Re: Thanks Betty and a Question

[Guest guest]

Sue, I missed a couple of things.....she has been neutropenic for years.....it

is not a new thing. We have labs from 3 and 4 years ago where her counts were

200-300. Her WBC runs a little low all the time (3.9 or there abouts) and also

drops to low range (not critical) with active infections. She NEVER raises her

white cell count during infections. I believe it was around 1.7 last it was

checked. She has hers labs done only every 6 months or so. She has had one of

her " non-sick " labs come back with a neutrophil count in critical range and a

WBC in very low range (1.9)...she slept all day long during this period......She

is always tired, but I can tell when her counts are down because she is

exhausted and her mouth is a mess with almost the entire surface of her tongue

gone and mouth sores. The problem is she also has chronic mucotaneous candiasis

and I always thought that was the cause until the immuno said he thought it was

the neutropenia, not the CMC.....tough and confusing to say the least.

> >

> > From: cerdaclan@ <cerdaclan@>

> > Subject: Thanks Betty and a Question

> >

> > Date: Thursday, February 2, 2012, 5:35 PM

> >

> >

> >

> >

> >

> >

> >

> >

> >  

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > 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.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >