She has her regular neuro there which we can get into anytime we wish...but we've been waiting for a specialist in mitochondrial disorders for this whole time. Had an appt. in October (scheduled 10 months out) and it got cancelled the week before because he was going out of town. I've heard the doctory at HarborView are good...and I just may look into that. Chelsi will be 14 in March and she's on Keppra and Zonegran. I can't say that drugs have EVER done anything for her. She's continued to have them since she was 10 months old. She averages 1 or 2 T/C's a month, which is 2 too many!
Subject: RE: [Cent_Wa_Epilepsy_Support] New Member
Sue,
Why is the wait so long? Does she have to go through Children's? My step-son (he is an adult, though) goes to HarborView Regional Epilepsy Center. They have specialists in pediatric neurology. http://pcs.hmc.washington.edu/Epilepsy/AboutUs/index.htm
The only delay for his VNS placement was waiting on the state to approve Medicaid coverage of the procedure! His VNS has helped, but he still has way too many seizures. Besides the VNS, Lars is on Keppra, Lyrica and Felbatol. He's just starting to ramp up on the felbatol and we've definitely seen some changes there. However, it's a very scary drug and he needs regular blood monitoring because of the potential of aplastic anemia and acute liver failure.
We've been extremely happy with the care and concern that his neuro has for him. The doc will do just about anything he can to help Lars get the services he needs! "Nurse Lynne" is absolutely awesome!
I so look forward to talking to you in the future. I have a 13 y.o. daughter with seizures. I don't have much time to chat now, but I wanted to welcome you to the group! I especially am interested in hearing about the VNS. We've been on a waiting list for over a year to get into a doctor at Children's hospital in Seattle to talk about it!
Hi, I am new to this group. I was just wondering how this group came about and what kinds of things do you talk about? I have a 29 year old daughter who was...
Hey, My son is 20 and I found out he has had epilepsy his whole life but only got "diagnosed" when he was 19. I am curious so sorry if I ask a lot of ...
Just a quick note to say hello and introduce myself. I am your neighbor to the south -- we live in Oregon. My son, now age 12, has had seizures since he was...
Hi Paula - Welcome to the group!. We live in Oregon also - Monmouth. Our seventeen year old daughter, Blair, had her VNS surgery six years ago. She is also on...
Paula, I so look forward to talking to you in the future. I have a 13 y.o. daughter with seizures. I don't have much time to chat now, but I wanted to...
Sue, Why is the wait so long? Does she have to go through Children's? My step-son (he is an adult, though) goes to HarborView Regional Epilepsy Center. They...
Hi Sue and Bonnie, Thanks for the welcome messages! It will be nice to have and give cyber support from this group. Sue ... I'd be happy to answer all of...
She has her regular neuro there which we can get into anytime we wish...but we've been waiting for a specialist in mitochondrial disorders for this whole time....
T/C’s??? Is that Tonic-Clonic? Boy, Lars would be *so* happy to have only two seizures of any kind per month! I can honestly say I've witnessed thousands...
Oh ~ school. That's been a little stressful. Chelsi is slightly developmentally delayed. She get's help in reading and math in special ed and in mainstream...
Hi Sue, I really feel for you. It's so hard to watch anyone experience a seizure, and doubly so when it's your own child. That must have been really hard...
Paula, I can so relate to you email. Especially the word "despair". I do feel like that at times. If I hear a "thunk" at the other end of the house, I come...
Hi All: My name is Diana and my husband is Glyn. We have an beautiful 11 year old daughter (Claire) who was diagnosed with epilepsy at the age of 4 months...
Diana ~ thank you for telling us your story, as sad as it is. I'm so sorry that Claire and your family have had to go through this. I will pray for success,...
... so sorry that Claire and your family have had to go through this. ... age ... quite ... Feb. ... not ... nor ... sockets. ... getting ... now ... by ... ...
Hi, my husband is 42 and has recently been diagnosed, 3 months ago. We went to the doctor with what was then a seizure a year. I wasn't even willing to call...
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