I was prepared for May 14th like some prepare for major college exams. I had a three page bulleted list of questions and concerns. I was organized, I was well researched, I was prepared for battle...
That was until the Neurologist walked in. Within just a few seconds of meeting us, she witnessed my daughter have a seizure (presented with eye rolling) upon seeing that she immediately shut off the overhead light. The room was filled with a nice soft light from the large window. Just like that I knew we were dealing with someone who really cared.
2 hours later we left her office with every question, concern, and curiosity fully answered. She ushered us from the exam room and into her office (which held her bicycle and backpacks and an assortment of sweaters~all of which made her seem so "normal") to show us the MRI pics. Then we made our way back to the exam room where she started writing prescriptions, began talking about some lenses she can order to help with the photosensitivity, and ordering EEG's ~ both Ambulatory and Sleep Deprived.
We left feeling Amazing. For the first time since February 25th we had answers and a plan. And it felt Amazing!
The technical diagnosis is: Juvenile Myoclonic Epilepsy. She presents with 6 different seizure types and has extreme photosensitivity. We are weaning her off from the Phenobarbital and beginning her on Depakote.
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Celebrate
3 hours ago
5 comments:
I'm really glad you finally got in (and super frustrated to hear about your insurance problems!) I usually think about you and your daughter when we are going to the neurologist. In fact, my dh asked about you in the car on the way home last time.
We're on our way to a trial of the Ketogenic diet. My son will probably be hospitalized in late June and we'll see if that helps. His diagnosis is currently Lennox-Gestault Syndrome.
Tam~Thank you for stopping by and for thinking about us. My heart goes out to you too. Lennox-Gestault is such a difficult one to treat. Ketogenic diet has such a good "success" rate but it sure sounds difficult to get used to. Will you be staying at the hospital with him or do you have some other plan? I'll keep you in my thoughts.
I'll be staying with him. It will be an interesting change for us as a family. No more 'lazy' days driving through McDonalds for me (or throwing in a frozen pizza). Still getting used to the idea.
I hope things are going well this week for you.
I am SO GLAD you found a good neurologist. I love my neurologist (for MS, not epilipsy)--all my doctors, actually--it makes all the difference. I assume you're onto these--
You mentioned in an earlier post your surprise at not seeing many epilepsy blogs. I've noticed a couple, as well as forums, while looking for yours.
Just wanted to check back and see you folks were doing.
Thanks for stopping in! And for thinking about us. I've started to find a few blogs, here and there, and I swear by the CWE (Coping with Epilepsy)forum. For some reason finding these is a bit trickier than I thought it should be.
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