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Avatar universal


2 1/2 years ago we lost our 4 year old daughter to Acute Myeloid Leukemia.  The CDC confirmed 3 contaminations and we moved out of our home 10 days after she passed.  She was asymptomatic and onset of symptoms started with Flu Like Gastro 5 days before she passed after being correctly diagnosed the day before.  I realize this is very uncommon and am not thinking my other child has Leukemia.  

Let me explain, I am terrified.  About 9 weeks ago, my 3 year old was seen by her Ped for multiple spider bites, (we think), she hived and they moved to her hands from her legs, a week and a half later we went to the Ped.  The doctor noticed she had not had a CBC in a while, so he gave one and she had a 9.9 HGB, low MCV, low HCT, Low MCH and High Monocytes, Platelets 406 H

We gave her iron supplements as ordered and 2 1/2 weeks later retested her to the exact same numbers.

3 weeks later HEM/ONC tested her after continuing the Iron and it barely moved now with a low RBC 3.5 - everything else still low and a reticulocyte of 1% - He tested for Lead - Negative - thought it may be Mild Thalassemia, but unlikely - platelets 421, Low HCT, Low RBC 3.7, Low HGB, MCV normal, Basophils on the bottom low side, but not abnormal yet.

The HEM wanted us to do double dosing of Iron for 4 weeks and if same then Genetic Testing for Thalassemia and now to check for a possible bleed.  We went to GI and they thought it may be Celiac since she had a history of Gastro from birth.  Celiac was negative, a new CBC was run a week later, all chemistry normal except low BUN and low Creatinine, SED Rate out of 1-10 was 42 H, WBC 15H, RBC L 3.74, HGB L, HCT L, Platelets 547 H, Segs 52.1 H, Lymphs low 40.8. all other chemistry normal. IgG, IgA normal.  The GI wants to do a Endoscopy and an Upper GI to look for a bleed, 2 stool samples were negative for blood.  

She has some recent symptoms. She is 3 so it is difficult.  She has not been the same kid for over a year.  very irritable, now complains of Back Pain, her under eye lid seems puffy or full and last night she had a small fresh bruise under it, not petechiae, Itching, Fatigue, barely wants to eat, WBC and Protein in urine, but no sign of UTI, Said her hand hurts, rubbing her eyes a lot, and finally her side neck lymph nodes now as of this morning seem to be protruding.  She tends to show hers a little more than my other children have ever - and once was told she had weak immune system.  She was preemie 8 weeks.  I happened across a CBC from 23 months old and no one told me then she had a low HGB and low MCV.

I was tested for Thal Trait yesterday, results not back yet, but I was not anemic.

Please help.. ***@****
5 Responses
Avatar universal
My heart goes out to your family and your little girl I dont know where you live but I am a mom of 2 and I would find the best hospital there is and get her there as quick as I could. I will keep your family in my prayers!
Avatar universal
try posting this in the questions for the doctors forum maybe they can help a little bit better!
Avatar universal
I am sorry for your loss. I will pray for you and your child. I don't know anything about the tests you mentioned. I recommend you take an active approach. You need to find a clinic (Mayo, etc.) and make sure you get her treated quickly. Please let us know how things are going.
Avatar universal
Your family and ours are in the same situation.  We lost a 21 yr. old to AML 3 years ago.  Our only other child is 19 and has been sick for 2 years.  No success in determining the illness.  It is so frightening.  We fear for Myleodysplastic Syndrome (pre-leukemia) but the blood tests do not determine abnormalities.  I would like to have the dr's do a bone marrow but the dr's do not seem alarmed.  Please post  your progress is towards determining your child's problem.  
Avatar universal
A question for you. Have your dr's ruled out myleodysplastic syndrome?  
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