The phase that I have been dreading was mentioned today during a conversation between Allison and Dr. Bebin.................... Ketogenic diet
Ok We need all of you Keto experts to weigh in on this one ok??
I want to hear the good, the bad, and the ugly of it. If you have lived through the ketogenic diet then we want to hear from you.
Other changes include going back UP on his Keppra. Thats right, we were on our way down because of some " rage" issues the med was causing ( by the way, we have seen a HUGE change in his mood since we started coming down) and now we say good bye to happy Dawson and usher back in the Kepprage Monster. Now aint that just grand. I hate Keppra. It would be different if he was a seizure free raging monster. But to be in that bad of mood on the stuff,and still be having seizures,l just doesn't fit very well.
We are also going up on the Lamictal to see what that will do. In the mean time, Seizures continue to worsen. Not only in numbers but in how hard they are.... ugg makes me sick.
Please continue your prayers for Dawson. We appreciate it so much!!
We love you
Jeff and Allison
About Me
- Dawson
- Dawson was born Sept 4 2007 and was diagnosed as having Infantile Spasms when he was 2 months old. Infantile spasms are a rare seizure disorder. Our story is one of faith and hope. Dawson now has multiple seizure types as well as developmental delays. We are prayerful that we will be able to find a way to stop the seizure monster that lurks in his brain. Your prayers and support mean the world to us.
4 comments:
So sorry guys.Hate that you all are going through this again.Frustration is the word I heard from Tera yesterday and today I can feel it in your post.Tera is a great source of info on the keto as unfortunately so are many others that follow you and love Dawson.Praying for you all and wishing I could lift this burden from so many of our IS friends.I feel helpless but never hopeless.Love from California.
If you look back at my posts starting May 12 2008 you can read first hand about our experience (although you probably read it way back when). When we did it, Reagan was only on the Ketocal formula so things were a lot more simple. I know it can get complicated with real food. Kendall just started it a few weeks ago and she's seizure free on it, so that should inspire you! I hope it works for Dawson. Believe you me, I know what it is to be frustrated with seizures. Prayers for your whole family!
I do not know what the Ketogenic diet is. You guys will have to explain OR maybe I missed in an earlier post. Either way....what does this mean?
Love you all,
The Whitlocks
Hey guys!
i wanted to thank you so much for the touching e-mail, it really meant so much to me & i keep trying to get on e-mail to thank you but with the wild monkey at home all day and getting up at 5 every morning it hasn't been happening as quickly as we would like. He starts back to school on tuesday so I will have some quiet time to return e-mails then...ha ha ha!!
As far as Keto goes...we tried it & it didn't work for Connor obviously, but it is one of those things that you will wonder if it might have worked if you didn't try it. It is a definite life style change!! Holidays, going out to eat, and birthdays were difficult. YOu never realize what a social thing food is until you are limited to what & when you can eat. Luckily C wasn't a picky eater, but the first few weeks were very difficult. The meals are time consuming to make and very precise, almost nerve wrackingly precise. You will also have to watch out for the other kids to make sure they aren't sneaking him food and that he isn't taking their food as well. You also have to watch what products you use with him (soap, shampoo, cold products, etc.) I still have our copy of the keto book and you are more than welcome to it b/c I know we will not try it again. Just e-mail me your address and I will get it to you if you want it to read up before you decide. I know it is such a tough decision to make, but follow your gut. monica
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