Update from May, 14

Back to the drawing board. We tried eliminating one of her medications--Keppra, a couple of days ago. This resulted in over 60 seizures in a 48 hour period. The good news is that none of these seizures were bad. They were all about 3 minutes long and consisted of a little drooling and her characteristic eye twitching.

This afternoon they did a booster shot of Keppra and have added it back into her maintenance medications. The booster shot made an immediate impact and her seizures have slowed through the afternoon. Although we are disappointed, we now at least know that it is unsafe to withdraw medications at this time. So, if you are keeping score, she is now on 4 anti seizure medications--Phenobarbital, Keppra, Trileptal, and Klonopin (Clonazepam).

We are now seriously considering the Kenogenic Diet. This is a diet where 66% of patients see a reduction in their treatment medications and 33% can drop seizure medications all together. Scientists in the early 1900s recognized that religious groups that fasted for long periods had reduced incidents of seizures. Though not always called a Kenogenic Diet, this is an Epilepsy treatment that has been around for a while. It means that the body feeds off of fat as opposed to carbohydrates, which why this diet often gets compared to the Adkins Diet. Of course, in the case of an infant, the Klenogenic Diet will be regulated to encourage growth and has nothing to do with weight loss.

We don't intend on trying this diet unless one of the following takes play: 1. Claire continues to have seizures through the weekend on her four current medications. 2. We get more evidence that she will have epilepsy well into childhood. 3. She continues to quickly gain resistance to her medications over the next couple of weeks.

If Claire has a good weekend, we will go home Monday or Tuesday and continue outpatient care with OHSU. If we do end up going on the Klenogenic Diet, we will stay for at least another week. The diet requires constant blood sugar testing and urinalysis while Dietitians hone in her nutritional needs. The diet consists of 75% fat and as you can imagine, its tricky to get dialed in.

Claire had an EEG done today, showing reduced Electrical Seizure or "Background" seizure activity. This is great news and means that one or both of the new meds are working well. It gives us hope for a good weekend.

To add yet another wrinkle, Claire had some genetic testing done early in the week and some of the more complicated tests are coming back. We discovered that Claire has transposition of two chromosomes, 11 and 22. If you don't know what the hell that means, don't feel bad. The doctor's don't either at this point. They have yet to determine whether the chromosomes are balanced or imbalanced and have requested that Rebecca and I be tested for the same thing. Ultimately, the new information provided by this science will not change her treatment, but may determine how her epilepsy will behave long term or if there are risks for developmental issues. It may also provide more insight into our fertility issues.

Pray hard! We want outta here!