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It was a long weekend and Brett ...

Posted Oct 01 2008 8:29pm
It was a long weekend and Brett and I seemed to have changed our minds hourly about which treatment to begin for Jenelle. After much thought we decided to go with the FDA approved ACTH treatment as our first choice. We still have a prescription of the Vigabatrin coming from Canada in case we eventually need it. Basically, although the potential side effects of ACTH will be difficult, they are not permanent. Brett has had poor eyesight all his life, and he said he didn't want to risk that for Jenelle, in that the vision loss from Vigabatrin is permanent. Also, we know what the long term results are with ACTH, whereas there are no long term results from the Vigabatrin, so we just didn't want to regret using it 20 years from now unless we really needed to use it (i.e.: if ACTH doesn't work.)

Jenelle was admitted to Children's Hospital Orange County and we started another Video EEG for her B6 treatment. Once they were ready to do the B6, Jenelle had to be taken to the PICU for the treatment. Apparently if she had truly been B6 deficient, the injection of B6 would throw her system into shock, and make her stop breathing. Better safe in the PICU than sorry! Jenelle did fine with the B6, and obviously, it didn't stop her seizures.

Jenelle had her spinal tap done the following day. The resident that performed the procedure said it went very well, and she got everything on the first "poke" with very little blood! We won't have those test results for at least 6 weeks. We will start the ACTH on Wednesday. Most likely, she'll stay in the hospital until Thursday or Friday at the latest. She has a private room which is nice, but also it was given to us because the ACTH will weaken her immune system. If all goes well and she is home on Thursday, she will go back in another week or two to repeat the 24 hour Video EEG to see if the seizures have stopped. If at that time, she is still having seizures, we'll wean her off the ACTH and start Vigabatrin.
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