Sometimes it takes leaving a message where you threaten to page the doctor "911" to get things done. Well, sort of...After more than two weeks with no communication between UCLA and our pharmacy to get the authorization needed for Onfi (Clobazam), I left a message on the "UCLA system" last Thursday stating that if they couldn't get it done, I would be paging the Doctor to have him get it done. Because seriously, two weeks of continued seizures without being able to start a new medication simply because it needs authorization should be considered an emergency!
As luck would have it, the next morning I got a call from Dr. Shield's office. Immediately, I explained how I had been in contact with our pharmacy, and that the pharmacy swears they've faxed the forms 3 times to UCLA's number, and that I was really getting desperate to put Jenelle on this new drug and all the pharmacy needed was the Diagnosis Code, etc. Then there was silence on the other end and I worried that I had finally pissed them off and they were not going to be nice to me anymore. "Hello, did I lose you?" I said, and the women on the other end of the line said, "Actually Mrs. Curran, I don't really handle that, and I was calling you about the school forms Jenelle's nurse faxed to us, but, give me the number for your pharmacy, and the pharmacist's name, and I'll see if I can help!" Sweet Angel from God! Not only did we finally get Jenelle's medical instructions in place for school year, this woman called the pharmacy, approved Onfi, and gave them the authorization code to approve payment by Medi-Cal of the Non-Generic form of Felbatol! All of my problems fixed in one call! Although the run around and formality of the process can be frustrating at times; I absolutely love UCLA for moments like this. The dedication and team attitude they have towards the care of their patients is above and beyond job description.
So, Jenelle started Onfi on Saturday. Side effects include constipation and drooling. Oh Joy! Immediately I doubled her dose of Miralax because Jenelle hadn't pooped since Thursday evening. On Sunday, the boys had a baseball tournament in Pomona and we had another hot weekend. Jenelle was starting to act very lethargic so I opted to stay home with her on Sunday. It was rather relaxing day as she and I took naps all day. Unfortunately, not poop! Monday morning, it took a lot to wake Jenelle up for the 7:30 am bus, and even more effort to get her to walk onto the bus. In the back of my mind I also knew we still hadn't had a BM, but I was hoping for the best.
Around 10:30 am, the school nurse called and was very concerned about Jenelle. She had had a pretty rough morning trying to get comfortable and was mostly sleeping when she wasn't crying. The nurse also said she thought Jenelle might have a tummy ache because she had trouble walking as she was stooped over. I then explained the constipation side effect of Onfi, and we both agreed Jenelle would be more comfortable at home. Daddy came to the rescue and picked her up from school while Grandma Curran stopped by later to administer an adult sized enema. Brett says she slept most of the day, and when I got home around 6:30- still no poop! Around 8:30 pm, I gave Jenelle another adult sized enema where she finally had some relief with a small BM. Unfortunately, she still has some pooping to do!
The nurse reported this morning that Jenelle was in better spirits today, and was much more alert. I tried to remind Jenelle that Elmo says "Everybody Poops!" but I don't think she gets it just yet. As a precaution, I've increased her water intake by giving her water by syringe via g-tube to help get things moving. I'm confident, "this too shall pass!"
Seizure wise, things are good, but it's still too early to tell with the new drug. Please keep us in your prayers that things get moving soon for Jenelle. Thanks, and I'll keep you posted!