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Posted by Donovan and Patty on October 28, 2000 at 14:22:29:

In Reply to: Re: 19 month old with history of seizures since 1 month of age. posted by Darryl Koehn on October 13, 2000 at 21:18:57:

: : Our daughter, Brenna, is currently 19 months old. She has had seizures since one month of age. The
: : seizures started off very mild when they were first noticed and were difficult to catch at times. They consisted
: : of slight jerking movements in her legs. Upon mentioning this to our pediatrician, we were assured that this is
: : sometimes normal. The jerking movements soon started to incorperate not just Brenna's legs but her arms as well.
: : This was hapening approx. ten times a day.
: : It wasn't long before we made an appointment at Childrens Mercy with a neurologist. Brenna was given an EEG,
: : CT scan and an MRI all normal. A second EEG showed right focal spikes. The neurologist prescribed Tegretol.
: : This didn't control the seizures but they were now less frequent. Less frequent but more intense. Brenna went
: : from slight jerking movements to full body contractions. The seizures also only occurred during times of sleep.
: : At age three months, we noticed significant developmental delays. However, with the continuation of seizures
: : plus meds we couldn't expect too much from her. At seven months of age the developmental delays were very
: : obvious. Even though Brenna continued to have an occasional seizure the Tegretol was discontinued in an
: : attempt to give Brenna a chance to "wake up". A phisical and occupational therapist from Children's Therapy
: : Center started working with Brenna.
: : At eleven months of age we took Brenna to UCLA for a second opinion. There a video telemetry was conducted
: : to rule out infantile spasms. Topamax was prescribed. For the first time, Brenna was seizure free. She started
: : making headway developmentally but it was very slow going. Now at nineteen months
: : Brenna has started having seizures again. The seizures are pretty intense and only occur when she falls asleep.
: : Once again Brenna has lost some interest in her surroundings and is on edge frequently. It seems as though her body
: : has just stopped responding to the Topramax despite the numerous dosage incrases. We have just started
: : Brenna on Depakote. It's only been two days since the med change so it's effectiveness has yet to be determined.
: : We are hoping for the best.
: : If you have any words of wisdom or suggestions we would love to hear from you.

: Hi. This sound so much like our little son. We started to notice
: seizures when he was 5 and 1/2 weeks old. He is now almost
: 6 months old. The seizures seem to be a lot like Brenna's, slight
: jerking movements in her legs and arms with his eyes twitching.
: After he had this for a while (a month or so) he also started to have
: more intense ones where he becomes very stiff. He is currently on
: Topramax and Zonegran. The Zonegran was just added Monday.
: It looks like the Zonegran is not going to work. Could you please
: let us know if the Depakote is working? There would be a lot more
: I could mention about his history but don't have time right now. :(
: Wishing you the best.

Darryl,
I am so sorry to hear that your son is having to deal with these seizures.
Moreover, I'm sorry that you are having to deal with them as well. As parents
we want to do everything we can for our kids. However, when dealing with seizures,
there is a definite sense of helplessness involved. To answer your question, Depakote
worked for our daughter for about three and a half months. As of two weeks ago
the seizures surfaced again. We are now trying her back on the Topramax but unfortunately
we have yet to see any control. The seizures are at least a once a day occurrance and
continue to happen about twenty minutes into her naps. My wife and I are researching
the possibility of our daughter using a Vagal Nerve Stimulator. It's an implant that emits
an electric pulse directly to the Vagal nerve. In theory this prevents the seizure from occurring.
I hate the thought of an implant but I hate the thought of all these medications as well.
I'm curious....Have you noticed any developmental delays in your son? This is another
thing we are dealing with and wonder if it could be connected to the seizures. Thanks
for your response and thoughts.


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