After some gentle "prodding" I finally got a plan of action yesterday from UCLA. They are so busy and so under-budgeted that I'm sure its easy to get lost in their system. I'm still confident in their expertise, and am satisfied with our new instructions.
We are going to start a slow increase of Jenelle's Lamictal from 10mg a day to 60 mg a day. Dr. Shields recommended adding a pill every 3 days (until we reach 12 pills a day - yes, you read that correctly!) but I've decided to be extra cautious and will add a pill every 5th day. We initially had such a positive result on Lamictal (10 days seizure free) and she hasn't had any side effects so I feel if we are more cautious and conservative, all the better. After she is at 60mg a day, we are to give her 2 weeks, then call UCLA again to discuss weaning one of her other drugs (Topamax & Vigabatrin.) There was a new study published recently that says Lamictal has the best response and best developmental progress of any drug for Lennox Gastaut kids. Sounds encouraging, and as if we are on the right path! So, Jenelle got her first added pill last night with dinner - then she promptly turned into the "Party Queen of the Night" that she was when we initially started Lamictal. That insomnia effect is no fun for Mom and Dad!
Also, after emailing with some parents of our local Epilepsy Foundation COPE support group, I emailed The Brain Mapping Institute at Huntington Memorial in Pasadena as well as the Epilepsy Center at Johns Hopkins to see about getting into either Ketogenic Diet program. I know it is not an option at UCLA since learning their program is on hold, and she has been on the waiting list for a year now. According to a new LGS support group I joined, they say many of their kids have found wonderful results on Keto and Lamictal. I know the process of starting the diet will take lots of time, including time to get things authorized by insurance, so I'm sure the Lamictal increase won't hinder anything in us starting the diet. I'm told you can't be on Topamax when you start the diet, so maybe that is the drug we will try to wean first come mid-November when Jenelle is at her max dose of Lamictal.
And finally, Jenelle's wheelchair/stroller will be delivered on the morning of October 13! It will be such a nice convenience to have it as she is starting to get heavy to carry into school and daycare. I'm told it will have special straps so it can be secured to a school bus so she can join her class on field trips - and as I learned recently, it can also be strapped to the trams from the parking lot at Disneyland! ;)
Please continue to say special prayers for Jenelle these next 6 to 8 weeks during her drug increase. We hope she continues to tolerate the drug that is working so well, and that we won't have to discontinue it because of side effects. We hope that we can gain even better seizure control with the increase. Thanks for the prayers and support.