Open Door

Sorry if this isn't as organized as previous posts. Fatigue is setting in with this mama bear. We got to talk to Dr. Mikati this morning. He is so patient and not in a hurry which we really appreciate!

• The EEG is showing spikes every 2-3 seconds. We want to see no spikes at all! Spikes in between seizures are NOT good. The thinking is if the seizures stop the spikes will too. How related this is to Oliver's development is hard to assess but our own experiences seems to indicate the more seizures the more delays. Sigh.
• EEG is mainly originating from the left side which is a surprise. We thought it would be the right because of Oliver's left side issues.
• The Topamax seems to be working. We haven't seen any spasm type seizures since Oliver's first dose last night. We feel encouraged by this.
• Topamax has some gnarly side effects that are going to make this summer at pain in the butt. Sweating and overheating are serious side effects as Topomax inhibts your body's cooling process. Add on the limited fluid intake on the Ketogenic diet and you have a very strong reason to not be sweating too hard for too long. Guess we'll just have to stay away from the outdoors in the heat of the day this summer. If it works it is worth it but, it is another thing to think about, to "give up" in a sense. Sigh.
• We got more clarification about the CT scan and apparently there wasn't any significant growth. No significant change at all. This is great news. Dr. Mikati mentioned we might do a MRI here at Duke and then compare that with the one from UNC in August. I have no idea when that would happen but, my guess is that would happen if we can't get the seizures to stop.
• Dr. Mikati mentioned as our options going further that the "door is open" for surgery. He said there are many doors you have to get through to actually have the surgery but, b/c the seizures are localized (from 1 spot) in the beginning this might be an option. He also said the Vagus Nerve Stimulator may be an option. He has had some success with other kids with TSC and these type of seizures with the VNS.
• Lots to think about for sure. I think we'll be here until Monday. It is totally worth it to get the info we need and shuffle the meds/diet around. Thanks for all your love and support. We feel rather disconnected but, that is part of hospital living. We're looking forward to being home and in our "groove" again! We're enjoying visitors when we can get away.
• I hope this makes sense. It is as much for us as for you. There is so much to digest. I hope you don't tire of all the medical talk :) Please keep praying for us- that we would trust the One who is faithful.