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Will they ever stop?

Tue, 03/14/2006 - 07:30
Hi, My daughter was diagnosed with complex partial siezures & absence siezures at the age of 5. She just turned 11 the other day. I don't know if anyone will be able to help me here since my daughter has a very long history of other medical problems as well. She was born with a blood disorder which caused her to undergo about 40 blood transfusions over the span of 10 months. At the age of 14 mo. the doctors removed her spleen to alleviate the severe anemia she was suffering. This miraculously cured the anemia and she started to finally gain weight and catch up with her peers. However she was also born with an atrial septal defect ( hole in her heart) wich eventually led to a full blown stroke just weeks after her 2nd birthday. So we taught her to walk , talk etc. everything all over again. She recieves PT,OT and Speech therapy to help with partial paralysis the stroke caused. At age 5 she was diagnosed with the siezures and the meds began. She has been on Depakote sprinkle since age 5 added Tegretol at age 7. Then diagnosed with ADHD so Adderall XR was added to the mix. At age 10 the siezures started comming more frequently again so we under went another EEG to find that the left side of her brain at that time was in an almost constant state of partial siezures wich occasionally (3-4 times per day)generalize and would litterally spin her in circles. The neurologist gradually added lamictal to the mix and now with 3 anti convulsant drugs she is still having siezure activity and we will again be at the neurologist soon if increasing the Lamictal doesn't start to cnntrol them. I don't know if any of you are dealing with multiple medical issues or just siezures, but I would like to chat with anyone who might be able to help. Thanks for reading, A Hopefull Mom

Comments

Re: Will they ever stop?

Submitted by c.reader on Tue, 2006-03-14 - 17:56
hi, i too can feel what you are going through. has anyone suggested the VNS? i know its not right for everyone, however my 11year old son had one implanted in sept of 2005 and we are not seizure free but there has been an improvement. he is on Zonegran 300mg dly and he is going to have an eeg again thursday. he has refractory complex partial seizures with secondary generalizd. i know it could take up to 3 years for the full effect of the VNS however we really feel like we have a safety net. i hope this helps and stay strong. cindy

Re: Re: Will they ever stop?

Submitted by gert8474 on Tue, 2006-03-14 - 18:05
Thanks, for the response. What is VNS? This has never been mentioned to me by her doctors. The siezures and the Dr. believes the ADHD were both caused by the brain trauma from the stroke she had. The problem we run into alot is that so few children have strokes they really can't give us a prognosis of if she will ever be siezure free, or regain complete control over the right side of her body. We are hopeful and know that she's a tough cookie, she's proved that. Thanks Again. Laura

Re: Re: Re: Will they ever stop?

Submitted by c.reader on Fri, 2006-03-17 - 11:44
hi Laura, VNS stands for VAGUS NERVE STIMULATOR and it is implanted in the chest, with the wire attached to the vagus nerve in the neck on the left side. my sons is currently programmed to send a stimulation every 5 minutes for 30 seconds. i am deffinately not an expert on this but there is lots of infomation on the net. also you can look up the company that makes it...Cyberonic. much luck to you and your family.cindy

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