Our trip to UCLA!

As you know, I got the word last Friday that we were finally approved for our visit to Dr. Shields. Brett has been out sick the last few days, so Jenelle and I made the trip to UCLA yesterday to see Dr. Shields on our own. I think Dr. Shields was disappointed at bit as he enjoys talking sports with Brett. However, our appointment went well and as usual he was thrilled to hear of Jenelle's improved progress.

Since we last saw Dr. Shields, Jenelle has had a 25% weight gain (8 pounds total!) so she was in desperate need for an increase on her seizure meds. He was shocked as to how much she has grown. Dr. Shields got to witness first hand Jenelle's strength and uncontrolled movements and agreed that we should be concerned with her possibly hurting herself. But at the same time, compared to almost 2 years ago, the change in her is nice to see. I told him about her increased seizures and he felt it was definitely the weight gain.

We now have a plan of action and it was not what I had expected. We are going to increase Jenelle's Felbatol, which has been her main seizure drug, and the one with the best results. She will now be getting 1,000 mg a day. I had hoped we would increase her Tranxene (the Valium like drug that keeps her calm and helps her sleep) but instead Dr. Shields wants to take her off it completely. While I argued that it was the only medication we had to get her to sleep, he felt she had been on it too long and there are other drugs we can use for sedation purposes. His exact words were "trust me" and he explained that because Tranxene is a valium like narcotic, she really shouldn't be on it for this long. We're going to do a very slow wean off this drug as he explained that there could be a potential for "withdrawal" like symptoms. We're going to decrease by a half a pill every month until our next appointment - so in essence it will take 6 months to completely take her off the drug.

This drug wean could cause some instability in Jenelle's seizures (i.e. - they could increase) but Dr. Shields really wants to know if the Felbatol is helping all of her seizure types and if mono-therapy (using only one drug) could be beneficial to her behavior and development. Our next appointment is scheduled for August, and at that time we may discuss using psychotic drugs for our sedation needs and behavior problems. And of course, he assured me that he is a phone call away should things get out of hand.

There are times when Jenelle is sick or has vomited medications that I am comfortable playing with her medication, and in the last month I've been very tempted to increase the Tranxene on my own. However, I really felt uncomfortable making a change like that without Dr. Shields' direction and after our discussion yesterday I'm glad I held out and didn't increase it on my own.
The results from the a-typical Rett test were not available yet, and Dr. Shields wanted to run a platelet count and liver function panel to monitor her Felbatol levels, so Jenelle had another blood draw yesterday afternoon. This one went perfectly and without any problems. I told Dr. Shields about the problems getting the appointment approved and he simply shook his head. He said he wished their was a way to make insurance companies see the harm they are doing to other patients when they require such un-necessary appointments. I think we're preaching to the choir on that! ;)

Please keep Jenelle in your thoughts and prayers that the changes in medication go smoothly over the next 6 months. We should hear something soon on the Rett test. As always, I'll keep you posted!