Have You Prayed for Your Secret Sister Today?
Hey there!
Well we just finished an excruciating long week at Rainbow Babies in Cleveland. We were originally supposed to be there for 2 nights & 3 days, ended up being 4 nights & 5 days. Found out A LOT!!!!
She has Myoclonic-Astatic Epilepsy AKA Doose Syndrome. The doc said it's not a very common form of epilepsy, especially in children and there aren't very many ways to treat it. First, the meds she's been on are making her type worse. The Keppra was making her lethargic and crazy. We had to stay extra days just to get it out of her system because she was a "danger to herself". Several times this week it took 4 of us just to hold her down so she didn't crack her head off something. This morning was her last dose of that. :O) You wouldn't even recognize her today compared to last week.....Everyone be thanking God for the findings this week, truly. She's now on Depakene which the Dr. gave us a 70% chance of completely eliminating her seizures, but we will have to watch her close. We won't have the genetics or metabolic labs back for a couple weeks but the MRI was normal. If anyone knows anything about MRI's they normal cut the scans in 5mm pics......for her they cut them into 1mm scans to be extra thorough for any structural abnormalities. This doctor was incredible......he did every test he could so that she wasn't taking any meds she didn't need. They were constantly checking her medication levels in her blood to be sure she had enough in her system but not too much for her size. Rainbow Babies was the best care I've ever seen in a hospital. I'm sure that, financially, it's going to kill us....... but we just couldn't put a price on this kind of work. If anyone wants to read more on this type of epilepsy you can go to www.doosesyndrome.com .
Thank you to everyone who has been praying for us through this terrible summer and please continue to pray for Addison, that we can get these seizures under control quickly and without too much more trauma.
We love you ladies!
Ashley & Dan
5 comments:
Thank you for the update. That is super you found out as much as you did! I know Angelika couldn't take Keppra. Victoria has been on it for several years and she has had no problems. As you find out details on the genetic tests, etc. please let us know..we will be praying for you and your family! Love ya..Mom
Thank you for the update. That is super you found out as much as you did! I know Angelika couldn't take Keppra. Victoria has been on it for several years and she has had no problems. As you find out details on the genetic tests, etc. please let us know..we will be praying for you and your family! Love ya..Mom
oh ashley.. my heart is breaking for you guys.. all this to go through and not knowing how to help her.. i am so thankful you were given info and know more.. and that she is responding well.. that is AWESOME! news.. please keep us updated as you go and we will continue to pray for you all.
love you guys..
sue and shaun
Wow. Good thing you went when you did. Will be praying for you all and that Addison gets the medical care that she needs specifically and that this might bring the end to her seizures period so she can have a normal life!
luv,
Tracy
Hey Ashley:)
Just wanted to let you know that we love you guys and we are going to continue praying for all of you!!
Got your e-mail and I will be getting back to you soon:)
Love Lori
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