Well, its been a little over two weeks since we saw Dr. Shields, and we haven't heard from UCLA since. Apparently their contact person who works with insurance and makes arrangements for tests has been on vacation. Apart from that, we are now in the midst of a battle with our insurance over allowing Jenelle to go to UCLA. Initially when we put in the authorization request for our second visit to Dr. Shields, they denied it. With some quick phone calls, in which I was transferred four times, I spoke directly to the Medical Director ( a doctor himself) of Jenelle's medical group and explained our situation. Apparently for whatever reason, her medical group wants us to go to UC Irvine rather than UCLA. We've heard that the Pediatric Neurology department at UC Irvine is actually dissolving, so we have no idea why other than distance they are sending us there. Once I spoke to the Medical Director, he said he personally knew Dr. Shields, and we needed to see him, so he reversed the initial denial the day before out appointment. A couple of days later, I got a letter from her medical group saying the authorization for our visit to UCLA was again denied. I am in the process of calling them daily to correct this - I'll keep you posted, but I'm confident we'll win out in the end.
We saw Dr. Phillips again last Friday and it was a rather pleasant and encouraging visit. He said he didn’t think Jenelle would make a good surgery candidate, but also thought it was an avenue we should explore. Since my last update, we heard from some friends that Dr. Michael Muhonen at CHOC is apparently a national renown brain surgeon. In light of our insurance issues, I asked Dr. Phillips if these tests could be done at CHOC instead with Dr. Muhonen doing the surgery, and he said, "He's the best, but he doesn’t do this type of surgery." Basically, according to Dr. Phillips, UCLA is the only place that does this surgery (for generalized seizures) and if it were his child, he would only go to UCLA as they were the best. He said he would step back at this point and let UCLA take the lead from here, but wanted to be kept informed, especially before she has any surgery. He said he hasn't given up on her, and neither have we. I feel more confident in our fight against insurance, especially in knowing that we must go to UCLA because the same thing cannot be done anywhere else.
On a lighter note, Jenelle seems to be improving with her fine motor skills, but at a stand still in her gross motor skills. She is making more eye contact, using her right hand more and is generally a happier baby. We are still seeing daily myoclonic seizures, but thankfully have not seen a grand mal since starting Klonopin. Last week, I was drying Jenelle off after her bath, and Jack was helping me. He started to play "peek a boo" with Jenelle and was trying to make her laugh. It worked and he got the biggest belly laughs and the best smiles from Jenelle. As she was laughing, she was making eye contact with him and really participating. At times she would pause in her laughter to wait for him to sneak up on her again. It was so wonderful to see them interact together. Jack looked up at me and said, "Mommy, I’m making her laugh!"… he must have really needed that. So did we.
I will keep you posted as the UCLA saga goes on. Please send positive thoughts and prayers that the dispute with insurance resolves quickly, and we can get up to UCLA soon. Thanks for the support!