Vandy follow-up visit

Yesterday we headed to Vandy for our customary follow-up visits. Lettie had a 5-6 minute seizure on Monday night so we were planning on more med changes and such. Dr. Paolicchi was pleased with how she looked but disappointed on the seizures returning...again. It seems we have these honeymoon periods without seizures then they return. We seem to stay on this cycle and it is terrible for Lettie's development. My concern was that Lettie was progressing to Lennox-Gastault syndrome which is a progression of infantile spasms with fewer seizures but uncontrolled by meds. Pretty much if your EEG presents with this syndrome prepare for a lifetime of uncontrolled seizures.
Dr. Paolicchi ordered an EEG so we hung around after our morning appt and did an hour long EEG in the afternoon. The results were good in that no signs of Lennox-Gastault but also it was good so that left us with the question of WHY are we still having seizures! Her next answer was one Mark and I had discussed before but didn't want to face.... a failed hemispherectomy. Her recommendations were to do an MRI and see if there are any microfibers from the right hemishere still attached to the left and that is why we continue to have seizures with a good EEG. If this is the case the next step would be to surgically remove the microfibers! Yes that ugly word- surgery- was used. If the MRI shows no signs of attachment then we would have to try another treatment we did when Lettie's seizures first started called ATCH. This involves injections we would give Lettie on a daily to every other day basis for 6-8 weeks. While using this hormone she has to have her weight and labs drawn weekly and BP and urine tested daily. It is a lot of stuff to do but we've done it before and it can be done. The news was a lot but at least we seem to have some solutions ahead of us. I'm just going have to bathe this child in prayer cause surgery is gonna be really hard if we have to go down that path. I know what to expect now but not emotionally prepared to go back there and she had so many complications last time I don't want her to go through that again...it's just not fair to a poor 2 year old to have to go through so much in her little time here. I will keep you posted when we find out when our MRI is scheduled. It was a long day..about 8 hours in the hospital and not my favorite place by any means. Lettie also had a seizure on our way home. Isn't life just so hard sometimes?!