I am new to this website and have just been viewing stories, comments, etc. I recently responded to a comment, but feel I have more questions I would like to ask. I am finding it really informative to read through everything although also scary as I did not realize how complex epilepsy is.
My son has been diagnosed with infant epilepsy at 6 months. He had his first 4 seizures though at 5 months. He is now 10 months and is currently still having myoclonic seizures, while on his second medication Keppra. He has had all the tests, EEGs, MRI, CT scan, blood work, urine/stool samples, the works. However the cause is still unknown. Our medical team is still looking into this.
Should I be looking for triggers? Light sensitive, foods, deficiencies, constipation, etc?? Has anyone found factors that seem to help? I have been trying to find some commonality amongst all the seizures as I want to know what seems to be triggering them. There are just so many variables. A woman in my home community said her daughter had a food allergy triggering her seizures. We just had some recent blood work and his iron and vitamin B12 were low. Since all the medication his appetite has gone down and spits out/up fluids and foods. It has been hard to keep him hydrated and full of nutrients. On days when he does have a seizure he is so exhausted he sleeps most of the day and just takes in breast milk.
Since our son has had so many seizures, the neurologist was expecting to see some developmental delays, however when we saw her last month he is developing appropriately for his age. I am wondering what exactly the developmental delays are from or associated with??? Is it from the seizure themselves with the lack of oxygen to the brain?? Our son's seizures are between 1 - 3min long and he comes out of them himself, although exhausted. Or is it from the decreased time to develop appropriately because they sleep so much following a seizure? Or combination of both? Also it sounds like some medications also can attribute to growth and development.
Any information would be greatly appreciated. Thank you.