Re: Re: Thanks Betty and a Question

[Guest guest]

wow, yeah, she has severe neutropenia it seems....she really needs a bone marrow

biopsy!....

From: cerdaclan@... <cerdaclan@...>

Subject: Re: Thanks Betty and a Question

Date: Thursday, February 2, 2012, 6:50 PM

 

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

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

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> > 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.

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[Guest guest]

wow, yeah, she has severe neutropenia it seems....she really needs a bone marrow

biopsy!....

From: cerdaclan@... <cerdaclan@...>

Subject: Re: Thanks Betty and a Question

Date: Thursday, February 2, 2012, 6:50 PM

 

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

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> > 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.

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[Guest guest]

Intersting...my son's wbc consistantly runs under 2...if it gets to 3 we are

thrilled. Nothing has ever been said about being concerned with his levels.

Thanks Betty and a Question

> >

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

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> > 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.

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[Guest guest]

Intersting...my son's wbc consistantly runs under 2...if it gets to 3 we are

thrilled. Nothing has ever been said about being concerned with his levels.

Thanks Betty and a Question

> >

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

> >

> >

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> > Â

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> > 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.

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[Guest guest]

They really need to examine her bone marrow....that's a shame, years of

neutropenia, they should be looking for the cause...that will determine the

treatment...if it's autoimmune they need to know that too!  she needs a good

hematologist, one who deals with non-malignant hematology...sometimes typical

hematologists/oncologists only focus on cancers....neutropenia is serious and a

hematologist should be caring for a patient with chronic neutropenia.....

From: cerdaclan@... <cerdaclan@...>

Subject: Re: Thanks Betty and a Question

Date: Thursday, February 2, 2012, 6:42 PM

 

Sue, thanks for the response.

Her neutrophil count has dropped to as low as 200 when she has an infection.

This has been true every time it has been tested during illness. I find the

part about viruses interesting. We have been told that her T cell function is

the big culprit of her immune disease and that she (and all of us since we have

the same for CID) leaves her highly vulnerable to primary viral infection and

that her SAD leaves her vulnerable to secondary bacterial infection. Another

think I did not mention is that she has extremely low NK cell count....it is 40,

with normal being 210. She is always neutropenic, but the levels fluctuate

significantly with illness. She also has chronically enlarged cervical nodes

and tested postitive for GI lymphoid hyperplasia. She had a hemoc following her

for years, but no one has ever recommended a bone marrow biopsy OR a node

biopsy. Once, when he was out of town, there was another doc covering for him.

She was very concerned

about the size of her nodes, when she was not sick, that she said she would

biopsy them if she were her patient. She has an extremely good immunologist

following her now....we fly across the country to him. I trust that he will

make appropriate recommendations at this point. We ran the hair loss issue by

him this am and he is well aware of all of her other issues. My guess is that

he would run all the appropriate tests prior to jumping into things like

neupogen and I definately appreciate your feedback as it helps us know what we

need to address with him. Although he is a top notch immunologist, he said he

has never seen an immune disease like ours....his assessment reads " it is a

combined cellular and humoral combined immune deficiency that fits into no

defined immune deficiency " .......gotta love it.

>

> From: cerdaclan@... <cerdaclan@...>

> Subject: Thanks Betty and a Question

>

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

>

>

>

>

>

>

>

>

>  

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> 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.

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