15 MO Daughter Severe Anemic, with Allergies and Unknown Diagnosis and FTT
My daughter is currently 15 months old. She was Exclusively Breast Fed till 12 months. She started Almond Milk [Home made, organic almonds] at age of 11 month and solids started at 12 months.
May, 2013 Condition: Severely anemic, Lethargic, had 3 Blood transfusions, Low Albumin and Low Sodium, High Eosinophil Count
Current Condition: Hemoglobin 9.6, Still High Eosinophil Count 1.45k. Eating Normally, Weight 18.5 lb, Height 29.75", Hemoglobin not rising, weight and Height not increasing since last 3 months
History:
9 Month Lab Bloodwork - Hemoglobin 11.9
12 Month in Finger Prick test - Hemoglobin 11.2
Until her 13th month, she was very active, hard to hold down at one place. Ablenbsp; and wanting to climb stairs on her own unassisted. Playful all day.After her 13 months and 2 weeks, her activity level started diminishing. At first she stopped climbing stairs and running around, then she stopped walking and finally she would not move from her place were she sat. Her feet started appearing swollen in mornings and that progressed to legs and she was pale all over. Her stool was dark greenish and we noticed black slimy blotch in one of her diapers.nbsp;We got her blood work done and her Hemoglobin was 5.1 So we went to ER and Hospital.
During course of next 5 days her blood report was diminishing and she got blood transfusion
Day 1 at Hospital -
Hemglobin 5.1,
WBC High,
Eosionphil High,
Iron Low
Stool - Blood Occult Positive
Day 2 at Hospital
Hemoglobin 4.6
WBC High,
Eosionphil High,
Iron Low
Stool - Blood Occult Positive
Day 3 at Hospital
Hemoglobin 3.6
WBC High,
Eosionphil High,
Iron Low
Stool - Blood Occult Positive
Day 4 at Hospital
She got Blood transfusion 3 Units and that got her Hemoglobin to 10.3
Day 5 at Hospital
Hemoglobin 10.6
Stool Blood Occult Positive
Day 8 at Hospital
Endoscopy Upper Clean
Colonoscopy Lower Clean
Stool Blood Occult Positive
Day 9 at Hospital
Meckels Diverticulum Test Negative
Stool Blood Occult Positive
Day 15 At Hospital
Hemoglobin 9.7
Stool Blood Occult Positive
Almond IGE High - Allergic to Almonds
We were discharged from hospital without diagnosis with follow up GI visit, Hematologist Visits and Allergist visits.
She is on Nut Free, Dairy Free, Soy Free and Wheat free diet.
She is on Iron supplements,
She eats regular vegan food,
She consumes 8 10 oz of Coconut Milk fortified with Neocate
She has not gone through any Mid GI scopy as doctors advise that she is too young for any MidGI procedure.
It has been 1 1/2 months now She is 15 months old now, she is still underweight 18.5 lb, not growing in height 29.75 inch tall
We're at a loss, none of the doctors have any definitive answers to this.You would be godsend if anybody would have any clue to what could be happening to her, or any leads or suggestions,
Re: 15 MO Daughter Severe Anemic, with Allergies and Unknown Diagnosis and FTT
I am so sorry you and your little girl are going through this. I hope you get some answers soon.
I have absolutely no idea if this is even in the right direction, but have you discussed FPIES as a potential part of your daughter's diagnosis. My daughter has FPIES and her symptoms are different than your daughter's. But, I have read that in some instances it seems a high white blood cell count and low hemoglobin can be associated with it when the allergen is being given. Also, most children don't display FPIES reactions during the time they are exclusively breastfed, and many have failure to thrive. Unfortunately, there is no test for it as it is not an IgE-mediated allergy and will not show up on traditional allergy tests. Again, I have NO idea if this is at all the right direction, but something to think about if it hasn't been considered.
Also, what about a malabsorption issue/disorder?
Good luck! I really hope you get some answers.
Thanks for your response,
Hope your daughter is doing better now.
I had read some details on FPIES and she did show some of the symptoms like vomiting after having food/drink. She was on Soy Milk at that time so we stopped Soy milk and switched to Coconut milk since our allergist said that she is not allergic to Coconut. And she stopped throwing up.
One thing that still bothers us is her high Eosinophil count. Did your daughter show high Eosinophil count ? When they did Endoscopy and Colonoscopy on my LO the GI track was clear and they saw no signs of any allergic inflamation but after these 2 months she is holding steady on 9.4 - 9.7 Hemoglobin levels.
Her Daily Food Schedule consists of
Breakfast - Oat Cereal [Happy Bellies Fortified Cereal] + Home cooked Quinoa Flakes + Coconut Oil + 1 Scoop Neocate
Brunch - 3 - 4 Oz Coconut Milk + 1 scoop Neocate
Sleep - 1.5 to 2 Hours
Lunch - Lentils + Steamed Veggies [ Lentils rotated with peas, beans etc ]
Afternoon Snack - 3 - 4 Oz Coconut Milk + 1 scoop Neocate
Dinner - Variety of Pasta, Breads, Soup, Veggies [Wheat Free]
Doing all these she is just stable at 9.4 to 9.6 and same height / weight since last 3 months. We dont know what we can do next.
Right now we are waiting for some blood work to test Parasites, we are just hoping that she's positive for Parasites [ Atleast we'd know what we're dealing with ]
So the GI Specialist had ruled out Celiac disease because her Endoscopy and Colonscopy did not reveal any signs of that disease. It did not have any inflamation in GI track.
We are keeping her off Wheat, but still giving her Oats and Quinoa as grains. We use Millet and Flax bread for her.
I hope you get some answers. Obviously you don't want it to be a parasite, but like you said, at least you would know what it was.
Is there anything hidden (as far as milk or wheat)? Is the oatmeal certified gluten free?