I have been so excited about the good news I have to report that I could hardly stand it. However, knowing our past experiences, I'm not trying to get my hopes too high…. Anyway, lets start with the not so good news first! ;)
Four days into the new year and I am reliving vivid memories of Jenelle's 5 day stay in the hospital from Roto Virus last January. Yep, BOTH kids woke up on Tuesday vomiting! OH JOY! Actually, as a colleague stated - better to have both kids vomiting at the same time for 24 hours instead of 48 hours of kids vomiting! Good point! Jack was sick first, but thankfully at age four he can hold a bowl for himself and has good aim, so he really didn't need much more than some crackers, liquids, a dry place on the couch and the TV. Jenelle on the other hand with her issues was a little scarier. She started vomiting a couple of hours after Jack, and of course, an hour before her next dose of anti-seizure meds. Because of her low muscle tone, I literally had to "help her vomit" with the aid of a bulb syringe (too much information? Sorry!) Brett and I never left her alone because of the risk she has of choking. Later in the morning, I put in a call to UCLA who instructed us to give her Diastat (her emergency use anti-seizure med that is given rectally) in place of her morning meds since it was obvious she wasn't going to keep them down. This worked well and kept her seizures at bay - though she still has been having more seizures than usual. Both our local doctor and UCLA advised us to take her to the ER for IV fluids to help dehydration - however, we really didn't want to go there, so Brett and I decided to give her 1 tsp. of pedilite every 20 minutes until she could hold it down. After a couple of hours, it worked and we avoided the ER. Luckily by the evening both kids were fine and holding down Jell-O! Jenelle has had more than her usual amount of seizures this week since Tuesday, but I attribute it to the bug and missed medication. Other than the bug, she has been doing very well on Felbatol.
Now, the exciting news! We have an appointment to see Dr. Shields again next month, so I put in my usually advance call to UCLA to get the ball rolling for our request for HMO authorization for the visit. Usually it takes a couple of weeks for the HMO to deny the visit, have me appeal, then approve our request. While on the phone with UCLA, I casually asked if their Ketogenic Diet Program was accepting new patients again. Sure enough, they are! Then, the girl who was helping me said, "Why don’t I just put you down for a Keto Diet Consultation with Dr. Shields for your next visit in February?" Sounds good! Our HMO has already informed me (in writing) that they would pay for Jenelle to do the diet at UCLA, so it has already been approved! I'm not sure how quickly things will happen, but I'm hoping we can at least give this diet a try sometime this year. I've always felt that if we try the diet, we'll either find the "magical cure" we've been looking for, or we'll find something to point us in the direction of a diagnosis for Jenelle. Either way, after trying 8 medications where none of which have ever completely stopped her seizures, I think this is a valid next step! At the very least, it is promising to hear that UCLA's program is up and running again! As for the doctor at UC San Diego - I spoke to his nurse on Wednesday, and he still has not reviewed Jenelle's records, though they are the top of "his stack!" I am supposed to call back in two weeks.
I'll update again soon to keep you all posted. Thank you all for continuing to keep Jenelle in your thoughts and prayers!