The big meeting to discuss the results from our traumatic Video EEG was today. I stayed home to pick Owen up from his first day of school while Geoff, with the capable assistance of his sister Lisa, met with Dr. Roberts.
Dr. Roberts said he was able to isolate the regions of the brain where Noah's seizures occur: the frontal lobe and the left temporal lobe. Knowing this helps us determine what medications may work best for him and as a result we are moving him to a new medicine that hopefully will mean no more "bad days".
Dr. Roberts was able to determine that the left temporal lobe is underdeveloped. This may be a result of seizures or may have existed before them and is just exaserbated by the seizures. This is the communication center for the brain, so this explains Noah's speech delays.
Noah's frontal lobe is badly damaged by seizures. This is the impulse control for the brain. Noah's hitting, biting, and general brawler behavior can be explained by the damage in this region.
Hearing that Noah's brain has damage caused by the seizures made me think of David Axelrod and his family. If you weren't already aware, he is President Obama's Chief of Staff and his adult daughter has struggled with Epilepsy since she, like Noah, was 7 months old. He and his wife, Susan, who runs Cure (an epilepsy research charity) had talked about how awful it is each time your child experiences a seizure and you know it's doing more damage and making your child's job to recover one step more difficult.
Dr. Roberts said that he cannot predict the future but he thinks it will be more likely for Noah to always be behind his peers. What works in Noah's favor is that we have been aggressive in pursuing treatment for his seizures and therapy to help him compensate for his struggles. He only just celebrated his 3rd birthday and the human body can recover from so much.
Geoff and I were sad to hear the Doctor confirm what we were thinking; that Noah will probably always be in Special Ed and will need life time care. But really that doesn't change our plan: to insure Noah has as many opportunities to achieve everything he can.
gosh, I was afraid of that. I was hoping he had a little benigh tumor that they could take out and it would be all better. Well here is our plan, we are going to support Northwest Ep. society and know that one day they will have a cure and be able to catch him up. If not, Noah has the love and support of his family and he won't want for anything. love oma
ReplyDeleteI am so glad that Noah was given to 2 such wonderful parents. I am glad they could isolate it, and hopefully, better manage it with meds now. I wish the news had been better. But you are all fighters, and you will all overcome. Lots of love.
ReplyDeleteJust read your whole blog. You guys are some strong parents and you have wonderful strong kiddos. Just want you to know we are here for you if you need anything. Please feel comfortable with us, you have let us see into your world and we are thankful to know you and your kids and for being just who you are ;-)
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