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Below describes her condition in point form;
1. She has focal seizure. Right side of her eyebrow and eye twitches, Right hand & leg twitches. face pulled to Right side
2. Normally has seizure episode when sick or at the onset of illness. Often flu, had had lung infections more than 4 times. Noticed that, if the seizure is caused by viral infection ( with fever) , the seizure episodes lasted very long - 1 hour to 11/2 hours. Diazepam doesnt seem to stop the fits. Phenobards given at Emergency unit usually stopped it.
3. Seizure happened without viral infection are brief , less than a min. Usually, she would quite down, tell me she feels scared followed by a scream and she would turn her head to her right and her right eyes would start to twitch and than stopped within a min.
4. She is currently on Phenobarb, Epilim & Frisium. We have added Tregetol and lowering Frisium today. Frisium failed to control her seizure.She started taking medication with phenobarb at 7/8 months old. We had tried Lamictal but no effect as well.
5. My daughter inherited thalassemia trait from me. Her iron level has always been low. We had her iron level checked everytime she has an seizure episode. Sometimes, blood was taken for iron and other test (white blood counts) during seizure and other times it was taken after seizure when she was still in hospital. Looking at her blood test result now,her iron level at 6 months old was 6.1, at 16 months was 7.1, Ferritin -normal - 29.3 and a test done 2 days ago at the age of 2 years and 1 month, her iron level was 6 + with normal Ferritin level.
6. I believe my daughter also inherited lactose intolerance from my husband. We are yet to run a test to confirm that. My daughter's stool was watery ever since she was born. I suspected something was wrong and had told my doc abt it. But my doc told me it was nothing wrong. At the age of 1+, we changed to lactose free formula and ever since than her stool was solid and dark.
I have been reading a lot on epilepsy. I came across some articles on iron insufficiency may play a role in epilepsy. Since my daughter's iron has always been low and she often gets her seizure when she is sick, I suspect her seizure might be linked to iron deficiency. And since she is thalassemic, I have read that in the absence of concomitant iron deficiency, iron supplementation will neither correct nor improve anemia due to thalassemia. I would be most grateful and thankful, if you could share your knowledge and advice on this area.
I have expressed my concern abt my daugher's anemia profile and have asked my doc whether could it be the cause or contributing factor that she has epilepsy. He recently told me that it is an area of concern and he is looking into the matter.