We are on day 10 of the Phenobarb wean (it is all gone!) and Reese is stable. Usually day 7-10 is when her body reacts to the missing med, but so far so good. Her seizures have been better this week instead of worse. So, it makes me wonder if the Ketogenic Diet is really working. I hope so!!! God has confirmed that we should start weaning the Depakote next. I have been reading that it can actually interfere with the effectiveness of the Diet. Then, the last couple days I have been reading the testimony of a mom who weaned her child off of all of his meds, and then the seizures stopped. Hmmm...isn't that strange? On the meds he was seizing, off the meds he was not. We see our neuro on the 14th and we have lots of plans to make. On an interesting side note...an article about John Travolta's son appeared in USA Today on Monday. He died from a seizure and the seizure expert that they interviewed and quoted was none other than our doc, Jeffrey Buchhalter. That was great confirmation that we are fortunate to be under his care, as he is obviously a well-respected authority in the US. Amazing...
We see obvious improvement with Reese's vision. She has started noticing people as they walk by, her hands, her bottle. It is so cute when she tries to zero in on her bottle while she is drinking. She goes cross-eyed and furrows her eyebrows. Yea!
wow! I love those little improvements that are such a big deal....It's amazing the things that come naturally to our healthy kids that we didn't think about before; and those same things with regard to our little ones (T & R) really open our eyes and teach us not to take life for granted. These children truly are a gift.
ReplyDeleteKim T.
Hi Kerry,
ReplyDeleteI so heartily agree with Mario's assessment in his article January 9! The Lord certainly knew what He was doing when He placed Reese in your care.
I wanted to let you know that I was diagnosed with epilepsy in 1971 and immediately started on meds for seizures. In my experience, the meds only made the seizures worse. We tried many difference prescriptions and combinations but it was when I finally asked for a break from the meds in 1975 that my seizures lessened. For the past 33 years (with no medications) I have had maybe 3 or 4 seizures. Of course, I am not saying what I did is right for everyone ~ just thought my experience might encourage you.
We continue praying for you and your darling family!
Love,
Debbie Brown