If you have a child with med resistant seizures...
...you may find this article (by the New York Times) interesting.
If you have a minute to read it...I'd love if you took another to share your thoughts (by leaving a comment) regarding the information in the article. Or really any thoughts you have about the Keto Diet.
I'm trying to absorb all the information possible...as we continue to plod towards this intervention as our next step in attempting to rescue Trevy!
9 comments:
It's a good article, I have a ton of thoughts on it actually. I might write a blog about it, Jen is taking the kids to her sisters for the weekend and I might write a bunch of stuff since after I clean the house and mow the lawn I am not going to have a whole lot more to do.
Today's moderation word: elybow. :)
I really know so little about the diet. I rejected it as an option. Austin eats such a small variety of food, that I knew eliminating what little he does eat would be a disaster.
Can you do a minimal transition? Try adding more protein and fat and reucing sugar in his diet? Or what about trying a modified atkins at home. Talk to the ped and/or ped neuro and ask about some less invasive diet options.
If I don't talk to you, Happy Mother's Day!
I have lots of thoughts on the diet since Sophie was on it for 6 months. This is when we didn't think she was a surgical candidate and actually Dr. Chugani suggested we try it. With all that said, I have heard that the diet does not work with those that are surgical candidates. I don't know why.
Interesting...it's definitely one of our next steps...although I'm not looking forward to altering one of the only areas that Austin's progressing...eating.
Thanks for sharing & Happy Mother's Day!!
Ken...write a post. I want your thoughts! And it'll help your missing them pangs... Gotta love the mod words...*wink*
Jen...How I wish I didn't have to give the Keto a second thought. The Italian in me despises taking food from Trev. But the fact is...if meds aren't going to work...then I have to be open about giving it a go. Actually...I heard recently that some dieticians are using a GI-ish diet too...a little less restrictive
Elaine...you should share you Keto thoughts & lessons learned. If you find the time or energy! *wink* Very interesting about it not working with surgical cands...hmmmmm...
Holli...hon, I SO know what you're saying. I feel like food is...and always has been "our thing". Trev loves to eat. And I LOVE to feed him. And I've just felt like Keto would steal that from me. And it will...on some levels. But...I was dragged to a Keto conference last weekend. And it helped to see/taste first hand some of the foods he could eat. Ugh...I don't know though... Is it insane that I'd rather open his skull than switch his food?
...danielle
Hi Danielle-
I hope you dont mind but I found your blog on the yahoo IS group and I have found such comfort and support in reading your posts about how Trevor is doing and how you are dealing with everything as well. I often feel all alone dealing with a child with seizures but when I read your posts and know that others are feeling and experiencing similar situations I some how feel less alone. My little Man will be 2 in just a couple more weeks and he started having seizures at 4 months old (a few days after his vaccinations). They didnt originally start as IS but within 2 months of them starting they had evolved into IS. We did ACTH for 6 weeks and it worked. We got a glorious 6 months of no seizures but just before his first birthday he started having some seizures again. They closely resemble IS but his background EEG is normal with no hypps. They are called tonic with myoclonic jerks and he has them 2-4 times a week lasting upwards of 12-13 minutes. Despite 9 different medications and the keto diet we have still not found relief:( Our neuro is in the process of discussing Aiden's case with the Cleveland Clinic in hopes that they may have some magic tricks up their sleeve and to see if they think he could be a candidate for surgery.
Sorry, I just wanted to give you a little background on us so you wouldnt think I was some random person but I was going to post about the keto diet. Aiden was on it for 4 months (and to be honest they were a very difficult 4 months for us). As with all the other treatments we have tried Aiden responded well for the first couple of weeks and then his brain just found another way around the treatment so we decided after 4 months to stop it. For me the worst part was watching Aiden scream and cry after he ate because he was still hungry and not being able to feed him anything else for another 3 hours. Aiden also lost about 4 pounds (which is alot when he only weighed 26 pounds to start with). He was also really tired all the time and just wasnt his usual happy go lucky self. Its also really hard to maintain the "normalcy" of life. For us at least, alot of our family time is centered around food and that totally changed while Aiden was on his diet. We couldnt eat as a family anymore or go out to eat b/c Aiden would cry for more to eat. I ended up eating twice a day...when Aiden napped and when he went to bed at night b/c it was just too hard to eat around him (and it just didnt seem fair to him). I dont want to discourage you b/c I definately think it is worth a shot. Alot of people have great results with it and it is definately better then the medication roller coaster. If it had worked for Aiden the sacrifices would have definately been worth it. I wish you and your family all the best and thank you for all of the information and encouraging words you post. It you have any other questions please dont desitate to ask.
Kristen
www.totsites.com/tot/ingle
I'm worried my hugs account went bankrupt...I left a comment here, and you seem to have chosen not to publish it.
Please forgive me, Danielle if my comment was inappropriate.
Praying for Trevor and your family, Barbara
Kristen...I'm SO glad you shared your journey. I intend to email you later...when I'm not so tired!
Barbara...NOT AT ALL! Blogger is funky sometimes...and your comment never made it through. I even checked to make sure it wasn't somehow missed and waiting for me in my moderation que. It's not? But I value your thoughts...and experience highly! And would't even mind if you took the time to do a re-write! *smile* I appreciate your prayers...and cyber friendship...
...danielle
Okay, I feel better...knowing hugs are still available when I next visit New England.
Another potential is that my Younger Teen distracted me and I clicked in error.
Basically I said I would consider the ketogenic diet for my own child.
I don't recommend getting medical information from the NYT or any other news outlet. The Lancet is a respected medical journal. The report of their study (per NYT) shows experimental evidence of the effectiveness of the keto diet in some children.
Parents need to be near compulsive to implement the diet correctly.
I recommend you find IRL support from other parents and professionals. A book and blogs are not enough support in my opinion.
Your family remains in my prayers. Barbara
*smiling back*
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