Just wanted to send out an update on Jenelle since starting Felbatol. The good news is that we no longer see the Atonic/Absence seizures that we were seeing before starting Felbatol. The bad news (maybe) is that we are seeing some new "tonic" seizures as well as her very old "myoclonic" jerk seizures we haven't seen in months. I'm trying to stay optimistic in that we didn't get an instant "no seizure" response like we usually do when we start a new drug (the "honeymoon" phase I described before where we think we've found the miracle drug, only to have her seizures return.) I'm hoping that as the dose increases her seizures will improve even more! The new "tonic" seizures are not fun to see (what seizure is fun to see?) Unfortunately, Jenelle stiffens during this seizure (every muscle in her body contracts), and she appears to either stop breathing, or hold her breath. I guess the only bright side about the "tonic" seizure is that it doesn't last long.
We finally got the "drop dead" letter from our HMO about the Ketogenic Diet at Huntington Memorial in Pasadena. I've learned since filing the appeal that Huntington Memorial does not accept our insurance, so our request was really asking them to make a private contract for Jenelle - A long shot to say the least! They did approve UCLA, and a "second opinion" with Children's Hospital Los Angeles. I've heard from other parents (and doctors) that CHLA is an excellent hospital, but I know little about their Epilepsy program. I'm told it is excellent but unfortunately falls in the shadow of UCLA's Epilepsy Program (which is the best on the west coast!) I'm checking with UCLA to see if since the passage of Proposition 61 they may be accepting new patients in their Ketogenic Diet program, and am still waiting to hear. I'm not sure whether or not we'll do the second opinion at CHLA - it all depends on UCLA, since we are already in the hands of the "best". Then again, it couldn't hurt to get a fresh opinion. I am also waiting to hear from UC San Diego about the records I sent last month. I'm sure as we approach the holidays, fewer of my phone calls will be returned! ;) We continue to keep up the good fight, and we keep jumping through those hoops!
Finally, some good news to report! Regional Center approved a 3rd day of therapy for Jenelle at the Blind Children's Learning Center! Starting in January, Jenelle will receive therapy in the mornings on Monday, Tuesday and Wednesday! I spoke with Jenelle's teacher today, and she told me that since the beginning of December, Jenelle has made some drastic improvements and appears to really be seeing things, as well as holding her body better in the up right position! I'm hoping this coincidence is from the new medication! This coming Friday, Jenelle will be a ginger bread man in the school's Christmas program. Unfortunately, after the program, I'll be taking her for her routine blood test (no fun!) Hopefully I'll have some cute photos to share with my next update (and I don't mean photos from the blood test!)
Thanks again for thinking of us and for keeping Jenelle in your prayers! I'll keep you posted!
Wednesday, December 15, 2004
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