Dear Dr. BEAM,
Last week we received the news that our daughter’s latest EEG came back normal. The epileptic activity that she experiences during sleep has been completely “cleaned up.”
I wanted to say thank you.
When we met you a couple months ago, we had arrived at Children’s for yet another overnight EEG and I did not have high expectations. Our daughter was on her third anti-seizure med, and her condition was no better. In fact, things had gotten worse. We knew that it was fortuitous that you were going to be on the ward at the same time we were in the hospital because you are only scheduled to be on rotation twice a year. Upon our arrival we were told that you would not be our attending physician.
My husband is an incredible and thorough advocate for our daughter and our family. He made several phone calls, and somehow convinced somebody that we needed to see you. Hours later a nurse came to tell me that you had agreed to “take us on” and we were being switched to your service. Her words were, “This is unprecedented.”
You believed she met the criteria for Landau-Kleffner Syndrome (LKS) [– a disorder characterized by continuous electrical discharges during sleep resulting in intellectual deterioration and loss of language.] Your simple kindness made an already frazzled and emotional mom want to break down in tears. You prescribed a high-dose diazepam protocol, and her spike activity, which at times has been at 85-100%, was knocked down to 2%. (We later learned from Dr. C that you made bets with some of your students about whether or not the protocol would work. You won. 8) ) Now, after two months of being on a smaller dose of diazepam and another anti-convulsant, her EEG has been cleaned completely!
Yesterday we began slowly weaning her from the diazepam. We know that there is a good chance the seizure activity will return; thus, she will remain on one anti-convulsant drug.
But for now, the electrical storm has quieted, and Rhema has a chance to learn.
In the past few weeks we have seen significant changes:
A few months ago I could not imagine her doing these things.
I had called this a little miracle. I was wrong. This is a HUGE miracle! I am so grateful to God, for although the road has been difficult, He has been faithful to provide for us every step of the way. Jeremiah 29:11 says “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
There is no way of knowing how far she will go in her language development, but her name means “the spoken word”. We hold on to that promise.
I cannot put into words how wonderful it is to know that as my little girl drifts off to sleep, her brain is no longer wracked with continuous seizure activity. It does this mother’s heart good knowing that we have done everything we can to help our daughter learn and grow… we have given her a fighting chance, and that… Simply. Feels. Good.
My mouth will speak words of wisdom;
the utterance from my heart will give understanding.
Thank you so very much,
Working with her therapist: