I have said this before, and I will say it again - I hate going to the doctor.
Today we saw the pediatric neurologist. All the neuro guys are weird to start with and that is still true. He is very nice, but different. We reviewed the EEG results from Tuesday and it was another heartbreaking visit. We were sent to the neuro man due to repeat startling that just seems to be getting worse. Her EEG shows slow activity (consistent with a major brain injury) and very chaotic, high-voltage pattern when she is sleeping. We have to go back on Monday for another longer study just to confirm, but he is 99% sure that she has a disorder called Infintile spasms. The outlook is of course bad - as with everything, and the treatment options are few. There are only two drugs that are effective and one has a 40% chance of causing blindness - which the doctor was quick to point out would not be an issue since she is already blind. I could have come across the room and kicked him for that comment, but I also understand that he does not have the same hope that we do. The hope that she will regain some of her vision.
We continue to hope for the best and pray for that miracle. Molly is still the most beautiful baby around and our job is to make sure that she gets all the love and care that we can give.
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I'm so sorry. I keep hoping and praying that things will start looking up and can't believe you have more bad news to digest! I'm with you on the drugs. I'd stay away from the one that causes blindness, too, and hang on to that hope of improved vision. Love you and still praying!
ReplyDeleteCelee
Hold on to hope! I am praying for all of you. God chose you to be Molly's parents - Advocate for her! Love and treasure each moment! You will especially be in my prayers tomorrow! Remember your strength and support does not come from the neurologist!
ReplyDeleteI have a friend who's daughter had the same thing "infantile spasms" she was put on meds and took a very strong steroid, but it worked! Maddie was fine and is ok today. Email her Alb1753@aol.com Her name is Kim. Her daughter had a lot of meds but beat the odds and is thriving and has no seizures. good luck, Karen kpattelena@gmail.com
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