Claire & the Ketogenic Diet

Last Saturday night Claire had two really nasty seizures. The first, around 8:30pm, just before her evening meds, she began an unusual seizure. She did her usual eye twitching and when that stopped, we thought it might have been over. But I noticed Claire's arm doing an unusual motion with her right arm repeatedly--it looked like half the crawl stroke. Shortly thereafter she gave the signals for one of her prolonged seizures--she turns red, sweats on her upper lip, then gives a short scream. Then she desaturated and all hell broke loose. It was like a scene straight from ER. There were three doctors and 9 nurses in the room within two minutes. Atavin is the drug of choice for aborting a prolonged seizure and an IV is the fasted way to get it into the system. However, her IV had been removed earlier in the day. Nurses made four attempts to get an IV and failed. Finally, the resident doctor asked permission to administer an IO.

If you don't know what an IO is, count yourself among the lucky. This is an emergency process of administering drugs when a vein cannot be used. (The squeamish may quit here) A small, Dermal Tool like drill is used to drive a needle through the bone into the marrow. Diastat (essentially a rectal syringe of Atavin) would have been preferable, but they could not get the proper dosing back from the pharmacy quickly.

The pain with the IO was sharp enough to stop the seizure. Unfortunately, Claire began a second prolonged seizure at 10:30 that evening. By then, the Panda team had managed to get an IV in her and doctors administer two doses of Ativan to abort the seizure. She has been seizure free since--but we know Claire cycles in three days.

These episodes fulfilled the criteria we set to begin the Kenogenic diet. We started this today. It begins with a fasting period to get her blood sugar low and increase the ketones in the body. Stimulating the body to feeding itself on stored fat results in fewer seizures in most patients. In infants this is fairly easy to control, because you can use formula.

For Rebecca, this means the end of pumping and breast feeding, but only if it looks like Claire can handle the new diet. Rebecca is of course disappointed, but we have been prepping for this possibility for awhile now.

We have also begun learning the necessary procedures for home care. We are learning Infant CPR, how to make the formula, and how to administer Diastat. If you like, you can learn more about the Kenogenic diet at www.charliefoundation.org.

OHSU's Neurology Department is also agreed that the hemorrhage in her brain was not the source of the seizures. They have shifted gears and are prepping us for long term Epileptic care. I have heard from many of you and read many a case study about children who suddenly stop seizures sometime in their childhood. The fact is, most cases of what starts or stops Epilepsy is unknown by science.

Pray that this Kenogenic Diet works and we get out on Friday. As always, I'll give updates. Thank you for your faithful prayers.