So here's the deal, the new doctor felt that it was necessary to take Sophia into children's hospital for a 72 hour EEG study... during this time they would try and provoke her to have a seizure, this way the could see exactly what her brain does during the seizure, the would be able to identify if it is generalized or all over and what part of the brain is affected. She said if Sophia had a seizure during the 72 hours we would then be discharged and wouldn't have to stay for the remainder of the time. They just want to see one episode on the EEG. When I say provoke a seizure we would interrupt her sleep patterns and other things- I don't even want to think about it. Obviously it wouldn't be painful just stressful... I hate to think we would deliberately try and stress her to the point of a seizure. I see the benefits of the test but it's a lot to think about. After the past two years and trying to prevent seizure after seizure to now say we are going to try and make one happen... I just can't wrap my mind around it. I don't know what to do. I am going to be making some phone calls this week while the doctor's office deals with the insurance and hospital stuff... I figured I'd go ahead and let them make arrangements, it will take long enough to do that. So, that's what the doctor wants to do. She was hopeful that if the EEG did come back totally normal that it might be possible to take Sophia off of an every 12 hour type of seizure medication and instead use the Diastat only when she is having a seizure and Clonazepam when she is running a fever to prevent the febrile seizures. That was an exciting possibility. I love the thought of not having her on the Trileptal anymore. I just hate the thought of that test. If any of you have done that email me or comment and let me know how it goes...
On a brighter note: Today was my Dad's Birthday!!! We went to my parent's house and had a BBQ. The kids made a scarecrow for the front of the farm and we spent the day together as family. It was fun! It was relaxing! It was wonderful!
Sophia and her cousin, Gracie... their scarecrow!
Me and My Sweet Boy
Then, the daddies (Tony and my brother, Virgil) took over the scarecrow...
Their finished product... minus a head!
My Mom and Dad with the scarecrow... minus the pumpkin head...
I love the pics!! Awesome Scarecrow. Paige and I decorated a bit on Friday! We will go get pumpkins tomorrow!! Happy B-day to your dad! Sound like a fun BBQ!
ReplyDeleteOn the whole EEG thing, I am sorry you have to make such a tough decision. It sounds like it would help them adjust some meds, and that could make for a much happier 3 year old! That is just my thought, I know how difficult these decisions are. I opted out of any EEG for Landon, except the enitial one they did while we were inpatient. And at that time it was normal. I thought well obviously he is having seizures, let's just meidcate. He hated being in the car and he had already been through so much. I just didn't feel it was in his best interest, but whole different situation with sweet Sophia! Just know that whatever decision you make, it is the best one! Praying for your ease and comfort with this!
Tami