Things continue to remain stable for Jenelle these days (knocking on wood)- thanks for the continued prayers! I spoke to Dr. Shields from UCLA yesterday regarding the improvement we've seen with the "max" dose of Topamax. Just a reminder, since reaching our max dose of Topamax, Jenelle's seizures have decreased in frequency and length - now we only get 2 or 3 a day lasting mere seconds instead of minutes. We have been concerned however because Jenelle's development has not improved much since gaining better seizure control. The sad reality is, as Dr. Shields delicately explained to me yesterday, that even with total seizure control, Jenelle may never improve developmentally. There still is hope that isn't the case - last week Jenelle was diagnosed with a "raging" ear infection, all the while she is still trying to bring in two new molars! He is hopefully that we can still give her development more time. Usually sickness like an ear infection, or teething will bring on more seizures, but we've maintained relative control so that is hopeful.
Dr. Shields decided that we've seen the best we are going to see with Topamax, however before moving onto a new drug, he wanted to wean her off one of her current drugs first. She is on three pretty powerful drugs as it is, so before adding a fourth, we'd decided to get rid of Klonopin first (a drug with valium components in it.) We started to wean Klonopin last night, and she will be off of it within a week. After missing last night's dose, Jenelle decided to wake up and make noise at 1:00 in the morning until 2:30 last night- not sure why, but maybe since Klonopin makes you sleepy, she was showing us how awake she was without it! I wish I had skipped the morning dose instead! Anyway, like sickness and teething, a drug wean can also bring on unwanted seizures, so I'm keeping my fingers crossed we can get through this week quietly. We will be off Klonopin completely by our next appointment with Dr. Shields, so we will then discuss a new drugs and maybe the diet at that time.
Jenelle was finally fitted for her stander and pediatric wheelchair. We are still waiting on insurance approval for the wheelchair, but it should be done by the end of this week. We will also be getting a "bath seat" which will be helpful since I usually just lay her flat in a tub of water 1 inch deep - maybe that is why her ear is getting infected so easily? Who knows! The stander will help her balance and bone density. Once we get the stander, we will fit her legs for supports (AFOs) and buy her first pair of shoes! High top Stride Rites - YAY! I’m sure they'll last a while since it may be a while for her to use them properly. The Pediatric Wheelchair is like a stroller and will be gratefully appreciated. Jenelle is almost sliding out of our current stroller, and I feel it doesn't support her well anymore.
On a final note - Jenelle's hair is getting even longer and thicker, but remains curly! She looks like a Q-pie doll! I have film waiting to be developed and will send new photos as soon as possible. Jack is doing well, and we hope will be fully potty trained by the end of this week. He loves his Nemo underwear! I will continue to keep you all posted. Please keep us in your thoughts and prayers that we don't have any unwanted seizures during this drug wean! Thanks again!