wanted to update on grandson, Ethan

[Rhea]

Hi everyone!! I know it's been a while, but wanted to stop in and say "hi" and a quick update on Ethan. He has been receiving the ACTH for several weeks now, and maybe able to start tapering down soon. His last 2 23 hr. EEG's with video have been considerably better, with little seizure activity. There is no hypsarythmia, which means it is not infantile spasms anymore. Although he still has some seizures, they are considerably shorter and "easier" on him and on the EEG. He has up days and down days. There is no evidence of brain damage, and the neurologist. expects things to continue to improve. He has started mild therapy for muscle tone and gross motor skills. We hope he will be able to hold his head up soon, and his back muscles are stronger. We are still praying and believing for total healing, so we are trying to stay positive. Meanwhile, a genetic team from UVa. is trying to put the pieces together genetically, and see what is going on with all of us. It is DEFINITELY genetic, just don't know what yet. Another genetic team will be working with them, as our "case" intrigues them. I feel like I am on the Dr. House show on TV. But, that is what we need, so I hope and pray they can help us. Meanwhile, my health is steadily declining. My hip and knee recently are involved, and another carpal tunnel surgery. Along with thyroid treatment and other things. I hope something is found out soon.
I have a few pictures that I will post later when I have more time. I'm sorry it took so long, but as you can see- we've been very busy. I watch Ethan a few days a week, so my daughter can work. She did finally get a part time position starting next week. She can still stay with the company, and have insurance. She alos is scheduling the rest of her tests for next month. My poor little girl is going through so much. Sometimes, I just don't know how we can do this. Then, I remember that we HAVE to. I can't do anything to help except help watch Ethan. I have no words or great encouragement I can give her. I have walked in her shoes, I do know exactly how she feels. Unfortunately, I have walked this road, and I know how it could end. But, it won't. We refuse to give up in any way. It's support of our friends and family, and church and places like this- that have helped us keep our spirits up. I would like to hear some success stories of ACTH if anyone would share theirs. I would also like to hear from others, and what they thought. Infantile spasms is such a devastating disorder, or could be, if seizure control is not achieved. I know that my little girl had no seizure control, and that's mostly what made it so bad. So, it's looking better for Ethan.
Anyway, it's late, I'm tired, worn out, frazzled and need my beauty sleep. even my wrinkles are getting tired. Good night all.

P.S. I may re-read this tomorrow and have to do some heavy editing.

[Nakamova]

Hi Rhea, thanks for checking in and letting us know how Ethan is doing. It sounds like you are on the right path, and I'm so glad that thinks are looking up for him and your family. Don't forget to take care of yourself too -- I hope you get some well-deserved rest.

Best,
Nakamova

[Toronto Mom]

Hi Rhea,

Thank you for the update. I am happy to hear that he has some level of seizure control. We are hoping for the best for you.

[horsehead]

Its good to hear he is improving some. Take care.

[CathyAnn31]

That is AWESOME!!!