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!
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 six. He's endured the gauntlet of symptoms, diagnostic testing, horrific bout of Steven's Johnson Syndrome (toxic reaction of Motrin), and of course anti-seizure medications. In October, he had VNS surgery, and we are hopeful that it will help control his seizure activity. He presently is experiencing only nocturnal seizures ... whoever thought I'd be thankful for JUST nocturnal seizures. His current mix of meds includes daily dosages of Trileptal, Neurontin, and Tranxene. He's such a great kid and a real trooper. He always faces each day with a positive attitude; he's an all around good egg.
Anyway, I'm looking forward to the dialog exchanges on this board. Are there others participating who have young children facing similar challenges? It will be great to gain additional insight from others.
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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