Jenelle's Journey

Jenelle started taking Vigabatrin the day she stopped the ACTH (10/28), and things are good! She is definitely "different", but its hard to explain how. The Vigabatrin comes in powder form, and we are to increase the dosage every three days until we don't see any more seizures. Last Thursday, her 4th day of Vigabatrin, and the first day of the increase dose, Jenelle developed a bumpy rash, so our Neurologist told us not to increase the dose until she could tolerate it better. She still has the rash, so he'd like us to keep her out of daycare a little longer to see if it subsides. Also, this will give her immune system a good 2 weeks to come back. She should be going back to daycare sometime next week - we hope, depending on the rash.

Now, the really good news. We haven't seen a seizure since Saturday night, November 1. I've seen a couple of "strange" facial expressions, similar to ones she used to make during seizures, but I'm not positive they are actual seizures. These facial expressions have been too slight and usually accompany her being touched or startled in some way. Dr. Phillips said if we aren't positive it was a seizure, then it probably wasn't.... which is good news! We need to schedule another EEG for next week, and then we will see him again on November 17. If I see another seizure, then we are instructed to increase her dose. She is on 500mg a day at this point.

Now, for the great news. Jenelle is much more alert and attentive since starting Vigabatrin. She has really made efforts to hold her head up, she is using her hands for support when on her tummy (something she's never done) and she is making excellent eye contact, and turns to voices or sounds. It's so hard to describe how she is "different", but it is definitely the "different" we were hoping to see, and we hope it continues and improves. It also appears that she is making efforts to crawl. Jenelle still can not sit up, so I didn't think she was trying to crawl, but her Physical Therapist said it was possible that she may crawl before she sits up. Jack sat up before he crawled, so I didn't think a baby could crawl first. Any improvement would be wonderful, but she has a long way to go before she starts moving around the room.

One of the not so nice things about Vigabatrin is that Jenelle is having bouts of insomnia... much to our dismay. She is usually not falling asleep until midnight or 1:00 am, and often wakes up at 3:00 am to coo and make noises in her crib until 5:30 am! I guess the good side of this, if any, is that at least she isn't "alert and cranky" and we don't have a child who is crying non-stop at 3:00 am. Hopefully, this too shall pass. As for her "one year" progress report... Jenelle is now 25 pounds, and 29 1/2 inches long. The day we started her treatment on September 29, she was only 22 pounds.