Saying goodbye after fighting refractory seizures for 3 years.
Our boy was a refractory case. We tried so many cocktail of medications yet non seem to work. He started with a few seizures every few weeks, then they became clusters. About a year ago he started having them every other week and would have 6-15 seizures for a week. We have gone to two neurologists and did a Fecal biome study with Cornell but nothing seemed to work. He was on three emergency medications at high doeses and they did nothing to stop his full week seizures like in the past. We upped his potassium bromide once more but then he started to have 103-104 fevers with swollen lymph nodes. We did Bloodwork (which was not good) and x-rays which is heart was now affected. His body gave up sadly. He just turned 5 in December. My heart is broken from the loss but to anyone who goes through this I feel you. It's a hard road dealing with epilepsy especially refractory cases. Thank you to this community 💚.
Our boy was a refractory case. We tried so many cocktail of medications yet non seem to work. He started with a few seizures every few weeks, then they became clusters. About a year ago he started having them every other week and would have 6-15 seizures for a week. We have gone to two neurologists and did a Fecal biome study with Cornell but nothing seemed to work. He was on three emergency medications at high doeses and they did nothing to stop his full week seizures like in the past. We upped his potassium bromide once more but then he started to have 103-104 fevers with swollen lymph nodes. We did Bloodwork (which was not good) and x-rays which is heart was now affected. His body gave up sadly. He just turned 5 in December. My heart is broken from the loss but to anyone who goes through this I feel you. It's a hard road dealing with epilepsy especially refractory cases. Thank you to this community 💚.