Hi there, I am new to the group and have a 4 almost 5 yr old girl that
was diagnosed with complex partial epilepsy when she was two. It has
been hard trying to deal with the seizures and whatching her go through
them. She is on her second med and that too has seemed to stop working
and her neuro wants to start her on another med along with the one she
is on. I have not started this med yet and am taking her for a second
opinion because she feels so sick on the meds. Im frustrated and am
looking to talk with other parents who are dealing with this. I feel
alone even though I know I am not...... can anyone relate???
Hi there, I am new to the group and have a 4 almost 5 yr old girl that was diagnosed with complex partial epilepsy when she was two. It has been hard trying to...
Lars has been through so many meds that didn't work for him or gave him serious side effects. Hang in there! *Something's* bound to work. I don't know if you...
Hi Candace, I too and new to this group. You are sooooo not alone. I hear completely what you are saying, especially regarding the stomach aches. Those...
Paula, Thank you so much for the reply. My daughter is also taking an acid reflux med and it really only seems to do a little. I started realizing that the...
Has she ever had long term monitoring, where she stayed in the hospital for a few days? They'll hook her up for a continuous EEG plus she'll be on video....
Oh, I can definitely relate! My 13 y.o. daughter has not been controlled since she was 10 months old. She's been on at least 8 different medications, and I...
Hi Candace, Boy, there certainly are many similarities in our children's cases. My son's seizure activities also did not show up on the first couple EEG's....
... that ... through ... working ... she ... yes i can relate my daughter was 11 when she had her first one and she is also dianosed with complex partial we...
I have never even heard of a spect scan. It irritates me that these options for diagnosis aren't even mentioned. Chelsi's had 24 hour telem, which showed...
Hey Sue! It takes a village, right? Sharing experiences, treatment plans, etc. might make it an easier journey for another patient. We are fortunate in that...
Paula - I loved reading your email. I'm headed to bed and then I'm off early for a business trip. I'll write when I get back....just wanted you to know I...
Hello again, I've read your email 3 times...sitting here wondering why it seems they're so unagressive in my daughters treatment. She's only been on 6 drugs...
Hi Sue, You know, one of the things that has amazed me through this entire journey has been a) the different drug "cocktails" that are used to treat symptoms,...
I think one of the biggest problems is that in something like 90% of the patients, there *is* no *known* root cause! It’s hard to “cure” something when...
Hi Sue, You know, one of the things that has amazed me through this entire journey has been a) the different drug "cocktails" that are used to treat symptoms,...
Hello Paula! I often wonder what my daughter would be like without any medication. I wonder if her seizures would be any worse, better, or different. She...
Amen to that. That was (and continues to be) one of the toughest things in dealing with this. To be the parent of a child that I'm so smitten with and knowing...
Hey Sue, I'm really pressed for time, but wanted to send an acknowledgement to your note. Lot's of things I'd like to compare with you. One thing, and I've...
Paula ~ VERY interesting! Our kids almost sound like polar opposites of each other. The only way I could explain it to her doctor was that her "thermostat"...
Hi, Has anyone in the group had VNS? A parent in Seattle is wondering whether it would be a good option for her child. His neurologist thinks that it might...
My step-son had the VNS placed at UW about 4 years ago. He's not a "child" - he's 37 years old, but I'd be more than happy to answer any questions. Sherry ......
Mineko, Although my son has only had his VNS for just over 3 months, I would be happy to talk with her regarding our experience. Our background is that my son...
Hi Mineko, Our seventeen year old daughter has had her VNS for six years. I would be more than willing to communicate with anyone on our experiences. Bonnie...
Paula - I'd love to hear his story on the board, as VNS is something we are pursuing also. Sue Mineko - This person is most welcome to join our board! ... ...
Hi Mineko, Kevin had his first implant at the age of 5 years old and his second one at 8. This parent can call Cyberonics for child ambassadors (LIKE ME!!) at ...
Dear Missy, Bonnie, Sherry and Paula: Thank you so much for responding to my e-mail about VNS. The person was very excited to receive so many responses!! Like...
Here is a link to the newspaper article (happens to be the FRONT PAGE!!) This article was written about 4.5 years ago when Kevin was in kindergarten at a very...
Lars is older, an adult, and attends activities at a local program for DD people sponsored by the city parks & recreation dept. After he got his VNS placed,...
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