We finally have some appointments lined up for Miss Jenelle with the CHOC Kidney doctor being the first set for April 5. After reviewing the documents from UCLA, the CHOC Kidney doctor felt it was OK to see Jenelle at the first available appointment rather than on an urgent basis. Luckily, we are only waiting a couple of weeks. Jenelle's GI tests are scheduled for April 15, so we had to postpone her follow up with the GI doctor to April 21. The month is already looking busy - and we haven't even factored in a date for the diet at UCLA (hopefully!) I spoke to Dr. Shields' nurse and he is pleased that Jenelle's bi-carb levels have increased, but really would feel better waiting for the approval from the Kidney doctor before we start the diet. Let's hope if the Kidney doctor orders tests, that they can be done quickly.
Since lowering her Topamax, Jenelle has started to bring back some of her old seizures we haven't seen for a while, specifically her myoclonic jerks. Unfortunately, our girl has decided to make some changes to these "old" seizure types and will now cry after a myoclonic jerk - something she has never done before. I think it is just that she is more aware of her seizures now, and how they interrupt her day, and not because of pain. Seizures may wear out a patient but are usually never painful - so we are told. Also this morning, Jenelle had a 3 minute seizure that I had never seen before and didn't quite know how to describe. It started as if it were going to be a grand mal, but then she started doing things she has never done before like lip smacking and grinding her teeth. I called UCLA to report this new stuff, and told the nurse I didn't know how to describe it - but she told me to just tell her what I saw, which is their preferred way of describing a seizure rather than me trying to naming it (grand mal, petite mal, etc.) Dr. Shields feels these new seizures are from the lower dose of Topamax, but does not want to increase it and would prefer we get her onto the diet as soon as possible! Sounds good to me!
And now for some good news. Jenelle is really recognizing people lately. I've been playing a game with her where I sit her up in my lap, and ask her to look for someone in the room (i.e.: Where is Daddy?, Where is Jack?) Would you believe that Jenelle will actually move her head and/or her eyes in the direction of each different person? What a wonderful improvement! Sometimes when I'm holding her, I ask "where is Mommy?" and she bends her head back to look up at me! We were showing this off today for her OT this morning, and Jack was on the other side of the room. When I asked Jenelle to look for Jack, she turned her head in his direction and looked directly at him. She may not be able to say our names, but she definitely knows who we are!
That is all for now. We are definitely on hold for the diet until after we see the Kidney doctor. Please say some prayers that we can get that done quickly, especially if the Kidney doctor wants to run special tests (that may require additional authorization - ugh!)
I'll keep you posted!