Jenelle's Journey

As we begin the month of August, we celebrate the continued stability in Jenelle's seizures and 3 months since our last hospital stay (or 5 months since our last hospital stay for emergency reasons as opposed to just taking tests!) Thank you all for the continued positive thoughts and prayers. The calm summer has been a much needed blessing for our family.

We took Jenelle to see Dr. Shields at UCLA last Monday for another follow up. We informed him that the status of her myoclonic seizures remain the same, i.e. fewer seizures with shorter in duration. Unfortunately, since starting the Klonopin wean on July 19, Jenelle has had 6 grand mals (that we've seen.) The good news about the grand mals is that they too are much shorter in duration - the longest being only a minute in length. Dr. Shields felt the return of the grand mals was primarily from the Klonopin wean and nothing else - good news!

So, Dr. Shields's plan of action is to do "one thing at a time" …thus we were instructed us to start Lamictal, another anti-seizure medication. Accordingly, it will take 6 weeks to see the "therapeutic" level and results of this drug, so unless we come across a side effect that causes us to stop Lamictal, we won't make any other changes to her medications for at least 6 weeks. While I asked about the possibility of starting the Ketogenic Diet and/or getting the VNS implant as an alternative, Dr. Shields responded that we should try at least 3 more drugs after Lamictal before the diet and/or VNS. His reasoning is that with the diet, it can take up to 3 or 6 months to fine tune everything to ultimately see results, and with VNS is can take a year or more for results. Assuming each drug takes 6 weeks to see therapeutic results, we can go through the "drug trial" much quicker. After we see the results from Lamictal, Dr. Shields said he'd like to wean Jenelle off of the Vigabatrin as most likely it has worked on her infantile spasms and they have subsided because of her age. After Lamictal, the other drugs we will try are Keppra, Depakote and Zonegram. So, assuming we can keep the seizure stability we can expect this process of weaning a drug, then starting a new drug for a few more months. The ultimate goal is to find a drug that gives us the least amount of seizures possible with the least amount of side effects. Hopefully, we can find and keep a ZERO amount of seizures with something!

According to our HMO insurance, this was our last authorized visit to UCLA. We are going to try to put in a request for additional appointments to see if we can "stay the course" with Dr. Shields and his team. In my opinion, I don't know why our insurance wouldn't approve additional appointments - since seeing Dr. Shields, Jenelle has stayed out of the hospital (not including her April stay for tests) which in itself has saved our insurance thousands of dollars (literally!) Saving money talks - lets hope they listen and authorize some more appointments for us!

Jenelle's new stander was delivered on Monday. I met with one of her Physical Therapists on Tuesday to "try it out" and Jenelle did really well using her trunk muscles for sitting, and her leg muscles to support her standing. We are supposed to try to use it at least 3 times a day for as long as she can take it. Her regular physical therapist has been on vacation, so when she returns on August 17, we will hopefully get to order the orthopedic supports to go with the stander. Since going off Klonopin, Jenelle has been much more alert and active. We are seeing smiles again, and she is doing well to "look" at things and support herself when being held. Her wheelchair and bath seat have been approved by her insurance and we are just waiting for the order to come in.

Big Brother Jack is doing really well, and is finally potty trained with an occasional accident here and there when he doesn't get to the potty in time. He is so proud of himself and loves to tell everyone all about it! So, that is all for now. Thank you all for the continued prayers and support - we greatly appreciate it. I'll update again when I can!