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worriedmama Fri Jul 7, 2017 02:24 PM

Marrow reading help?
 
Hi there,

My almost 4 year old had her second bone marrow biopsy and I would be grateful for any input.

She has normochromic/normocytic anemia. Her hgb was 9.2, Hct 27.5 and RBC 3.28.

70% cellularity both biopsies

Normal platelets, 249.

Mild absolute neutropenia without morphologic abnormalities. Neutrophils range 1.2 to 1.4.

Hematogone hyperplasia 11.3% (hematogones were 9.4% last year)

No increase in CD34+ blasts, 2.4%

Her lymph, mono, and eos tend to all be slightly elevated.

Still waiting on karyotype (which was normal last year) and the pathologist is running a MDS FISH this year that wasn't done last year.

Thanks so much!

Hopeful Sat Jul 8, 2017 01:12 PM

Hi worriedmama,

I am sorry that you and your daughter are facing this. I am not a doctor or in the medical field but can give my opinion, based only on my personal experience with AA/MDS.

Quote:

Originally Posted by worriedmama (Post 42838)
Hi there,

My almost 4 year old had her second bone marrow biopsy and I would be grateful for any input.

She has normochromic/normocytic anemia. Her hgb was 9.2, Hct 27.5 and RBC 3.28.

70% cellularity both biopsies

Normal platelets, 249.

This is all good except of course, her HGB is low and is probably making her very tired!

Quote:

Originally Posted by worriedmama (Post 42838)
Mild absolute neutropenia without morphologic abnormalities. Neutrophils range 1.2 to 1.4.

Again this is not that bad. "Mild" is not that bad. It is good that she doesn't have abnormal looking cells. A healthy person's ANC will dip below normal from time to time after an illness. So nothing alarming here, in my opinion. If her ANC starts trending lower, that is of concern.

Quote:

Originally Posted by worriedmama (Post 42838)
Hematogone hyperplasia 11.3% (hematogones were 9.4% last year)

This is unusual for reports that we usually see on this forum. So I can't comment on this. It is something to pursue with your child's doctor.

Quote:

Originally Posted by worriedmama (Post 42838)
No increase in CD34+ blasts, 2.4%

No increase in blasts is good!

Quote:

Originally Posted by worriedmama (Post 42838)
Her lymph, mono, and eos tend to all be slightly elevated.

Still waiting on karyotype (which was normal last year) and the pathologist is running a MDS FISH this year that wasn't done last year.

Thanks so much!

I don't see any smoking guns for MDS by this report alone. The FISH will tell for sure. I think something else is going on, but again, I am not an expert.

Make sure your daughter is being seen by an expert in hematological malignancies. I hope you find answers!

worriedmama Sat Jul 8, 2017 04:48 PM

Thanks so much for taking your time to give some input! Her anemia has been going on that we know of since she's been at least 1, and she definitely tires easily. Her neutrophils started trending lower this last year from about 2 to her current range which has been running between 1.2-1.4 the last couple of blood draws. We're working with a hematologist though my daughter has been proving to be medically complicated and defying a diagnosis at this point.

Hopeful Sat Jul 8, 2017 11:18 PM

Has she been tested for copper or iron deficiency? Does she have any GI issues or celiac? Have they done a urine test for heavy metals?

worriedmama Sun Jul 9, 2017 12:15 AM

Thanks once again for replying!

We just tested copper at the time of her biopsy this past Monday and it was in the normal range for her age (records havenít been update to show the exact amount), and her iron stores have all been in range:
IRON, TOTAL 97 25-101 mcg/dL Normal
IRON BINDING CAPACITY 332 271-448 mcg/dL (calc) Normal
% SATURATION 29 8-45 % (calc) Normal F

Her ferritin was mildly low once, but has since come up.

Metals were all negative and the only thing that showed with the urine testing was that coproporphyrin III was slightly elevated though the additional testing that came of that was negative. ERYTHROCYTE PROTOPORPHYRIN was slightly elevated.

Her hemoglobin has been consistently around 9.5, her neutrophils now mildly reduced and her platelets are in good range (though they used to be around 405 and now around 225-250).

Edited to add that she hasn't been diagnosed as celiac though I have a history so we're both gluten free. I noticed she had a sensitivity to dairy given her eczema, so we cut that last year with good results. She has no GI issues with the dietary modifications.

I really appreciate the input!!!

Cheryl C Sun Jul 9, 2017 07:18 AM

Have you treated your daughter for intestinal worms. They're quite easy for kids to pick up and can lower haemoglobin levels if not treated.

worriedmama Sun Jul 9, 2017 08:43 PM

Thanks! So gross to think about creepy crawlers inside, but definitely a fact of life especially for kids and pets! We followed a protocol by a naturopath just in case a while back but didn't see a difference. Might be worth revisiting.

worriedmama Thu Jul 13, 2017 10:27 PM

Just wanted to check in to update that my daughter's karyotype and MDS FISH were normal, and the report shows a clinical diagnosis of refractory anemia.

I hope to get more information soon. Grateful for this community!


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