Jenelle and I made the trip up to UCLA yesterday for our 6 month visit with Dr. Shields. As always, he was thrilled to hear of her recent improvements. To show off for him, Jenelle took three or four wobbly steps into his arms, and he had the brightest smile on his face! It was such a joy to see. After going over all the new milestones and recent test results from Dr. Chang, we agreed to stay the course with no changes to her seizure med Felbatol. As for the Tranxene (valium - Jenelle's "happy" drug), he feels we really need to try to wean her off again. If you recall, we tried to wean Jenelle off this drug last summer, only to have her cry constantly when she went through withdrawal. Now that she is back on it, she doesn't cry like she did. This means she is on it because she's addicted, and for no other reason, so we need to get her off it. He told me to take it slow, for as long as it takes. Our last wean was almost 6 months, so we'll see with this one.
The Tranxene wean may be a little easier this time in that we decided to add a new behavior medication. While Jenelle is usually a very happy child, those of you who know her in person know that she is in constant motion and often bites herself or anything near her mouth. Dr. Shields says this is behavioral, and that she is doing it to self stimulate. In order to counter this, he is prescribing a drug called Risperdal. This drug will hopefully take the place of Tranxene, so the wean could be easier than it was last time once we add the Risperdal. Please keep your fingers crossed for us that this works!
We discussed our recent visit with Dr. Chang at CHOC, and I gave him the report from the Neurotransmitter Disease Results, and we discussed Dr. Chang's request for an MRI/MRS. Dr. Shields didn't think the MRI would show anything new, but did feel the MR Spectroscopy could be useful. I know very little about the MRS, other than it provides a measure of brain chemistry. Dr. Shields is going to put in an authorization request for the MRI and an MR Spectroscopy to be done at UCLA (which is what Dr. Chang wanted.) Jenelle will need to be sedated and the procedure is usually done as an out-patient visit. From past experience, I know this could take a month or two to get scheduled. I'll keep you posted once we have a date.
Jenelle is doing really well in baseball and had another great game last week. She gets tired easily when she walks, but is improving greatly each day. Now she can walk the distance from our living room to our stove very quickly! I really need to do some baby-proofing of the house this weekend.
As always, than you for your positive thoughts and prayers. I'll keep you posted!
Friday, March 14, 2008
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Wow. Those are all such great updates. And isn't it wonderful when you get to share a smile with Dr. Shields? After all you've been through, it's a blessing.
Haven't been here for a while, but I've got a grin on my face now. Such great updates, WTG on the walking. I can remember the undescribable joy when Callum took his first steps so I can just imagine how you are feeling. Sounds like Jenelle is loving the baseball.
I want to say what an inspiration your story is for me. I started reading your blog and saw how much your little girl has achieved and it gives me hope for my own child. She has hypotonia, myoclonic seizures, CVI, slight microcephaly, and hypopituitarism. Thank you for sharing Jenelles Story.
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