Well, it seems we're all recovering from the flu, and Brett still has not been a victim ( knocking on wood!) It seems I had the longest recovery, but I'm almost back to health!
Jenelle is stable for the most part, but unfortunately is still having seizures. She has been off Phenobarbital completely since December 29, and is only taking Vigabatrin. Since taking her off the Pheno, I've noticed she is much more alert, and she is experiencing better sleeping patterns (YAY!) Our next step is the Ketogenic Diet and Jenelle is on a 4 month long waiting list for UCLA's program but may be able to start it sooner at CHOC with Dr. Phillips.
What is the Ketogenic Diet? A lot of friends and family have been asking that question, and now that I've read some books, I can finally give you an educated answer! The Ketogenic Diet is similar to Atkins in that her diet will consist of mostly proteins and no carbohydrates. The difference is that the diet must begin in the hospital with a "fasting period" and Jenelle will not be allowed to eat food or water for 2 days. When the body is fasting (or in starvation mode) it produces Ketones. They don’t know how it works, but the increased Ketones (or Ketosis) stops the seizures in most Epilepsy patients. In fact, a good percentage of children can often become seizure free, and can reduce or wean their medications. After her Ketones reach the appropriate level, they slowly introduce food back into her diet - mostly proteins and no carbs. Also she must take in a specific amount of food each day, all of it must be measured, weighed and carefully calculated to maintain the Ketone level, but also provide appropriate nutrition to keep her going. A lot of the food she is allowed is cream, butter, eggs, egg nog and the like. Its going to be difficult to administer on a daily basis, but if it results in stopping all of her seizures, it will be worth it.
Jenelle had a clinical evaluation with an orthopedic pediatrician and genetic doctor for California Children's Services on Monday, January 12. The good news is that Jenelle did not qualify for services with CCS. I know it sounds strange that we are celebrating that she didn't qualify for a social service, but there are two very good reasons for this… one is that CCS usually accepts orthopedic cases, and for lack of better description, usually the very extreme handicapped. So in essence, it appears there is hope for Jenelle in that area. Also, if Jenelle had qualified for CCS, we would have had to transfer most of her therapy to CCS, thus starting all over again with new therapists. We are very happy with her current therapists, and am thankful we do not have to change.
At this evaluation, the Genetic doctor (Dr. Touran Zadeh) told me she recently ran tests for Jenelle and recognized her name (remember the metabolic tests we had to re-do back in December?) Dr. Zadeh felt strongly that Jenelle's issues may be metabolic in nature (which means dietary.) She felt we'd have very good results with the Ketogenic Diet. The main reason Jenelle did not qualify was that her mobility issues are most likely a result of a problem in her brain or a metabolic issue and not from a genetic problem. This is also good news in case we decide to have more children. The chances of having another child like Jenelle are probably slim, but we still should pursue further Genetic Testing to be certain.
Although she is having seizures, Jenelle continues to make small progress in her therapy. She has recently started to use her right hand, specifically she will suck her right fingers. She is also holding herself up better, but still cannot sit up. Her tone is improving, but all of this is still slow. We are looking into getting a "stander" for Jenelle to help her bone density and vestibular issues. Also she will need a more "adaptive" stroller in the days to come, which is something between a regular stroller and a wheelchair. We are currently starting the process of ordering these items with her Therapist - the prices of each are frightening! I'm almost certain our insurance will cover some of it.
So, that's it for now. We hope you are having a wonderful start to this new year. I am excited for this year in that I know Jenelle is going to continue to make new improvements! Thanks you for the continued prayers and support - it means so much!