Hi, everyone! My name is Carmen and I am the mom to 3 great kids ages 17mo, 4y, & 9y. We live in the US and I am researching the possibility of thalassemia in my 17month old son, Killian. Our family consists of irish, german, & native american descent, however my father is Cuban, with Spanish, puerto rican, and probably african descent.
In November, he spiked a temperature of 106* for 3 days, emergency visits resulted in a diagnosis of a 'virus'. He received IV antibiotics + 2 in office injections. Since that time, he has had 9 more fevers with the latest (of only 100/102) resulting in 3 febrile seizures in a 30 minute period, the final seizure was stopped with Valium via IV in the ambulance. His hemoglobin in the ER that day was 8.3. Two days later in office it was 7.7 (finger stick) & we were sent to the ER where it measured 8 (CBC/vein draw) & we began iron therapy. Follow up bloodwork 2 days later (CBC/vein draw) showed 7.8. Since the febrile seizures, he has been 'dancing' in his sleep moving constantly (arms, legs, shoulders, hands, feet/toes, eyes, head). An EEG was 'normal' with 'drowsy bursts' ruling out seizures while he sleeps.
He is breastfed on demand and eats a lot of other foods-- he LOVES broccoli, asparagus, brussels sprouts, meats, etc. (Stuff most kids wouldn't touch). I am not anemic. Intermittantly over these months he has had hives which we thought were our dog so we rehomed her, and now it looks like there is also a corn allergy.
I have created a google document to help sort out all his values-- the doctor seems frustrated about why he doesn't seem to be absorbing the iron (?). The google doc is at:
https://docs.google.com/document/d/1bsG0y0kVn9EcRlk6TVIIs-oo7_Scqdm7MRe_zMOPPXA/edit?hl=en_US. Yeah, I named it Killian Syndrome, lol!
I would love a look from someone who has more experience with this. The document lists values of his labs in the ER in nov, the 1 value i was given the day of the seizures, our 2nd er trip (different hospital) and our followup with the doc. There was a mention that his iron was '13' at the 2nd ER visit, but I didn't include it as I don't know exactly what value it should be listed as... (serum iron or saturation or another value?). Also listed are the blood smear results. I've listed some tests and info at the bottom of it all as it was what i was thinking of asking her about. After some reading, I listed the rbc/mcv ratios as well.
Our doc wants to do an MRI tuesday due to the originial back to back seizures diagnosed as febrile. i was ok with this until I looked at his labs.. i think we need to worry about his blood first... She is a great doc and has been quite helpful.
I'm sorry if this is in the wrong forum-- I didn't feel like I have enough info to put it into the others. Thank you in advance for ANY directionn you can give.