Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi group, My name is Chrissy, Mason's mom. Mason will be 2 on friday and has BF polymicrogyria, with seizures, extremely low muscle tone (he still can't hold his head up), and cortical vision impairment. His neurologist just siguested that we try the ketogenic diet since his seizures aren't completely under control. We haven't started it yet but we might be starting it with in the next couple months. The only problem is that it is mostly diary based and Mason is alergic to diary products. I was wondering if anyone has done the ketogenic diet and if so how it worked for them, also is there anyone who's child has bad alergies (specifically diary) that had their child on this diet?? And sigestions would be very helpful to me. Thanks! Chrissy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 Chrissy, My son Max is 6 and started the ketogenic diet just this past August. In the beginning he was seizure free for the first time for 3 weeks. He went thru a couple of rough months where he lost too much weight and was iron deficient but now things have leveled off. We went down on one of his meds during the rough time and he usually has about 4 seizures a day. For Max that is an improvement. He is still on three meds. I actually think we can achieve better conrol on this diet and so have an appointment set up to see the Dr.'s and nutritionist at Childrens in Milwaukee. They don't do the diet very often around here so it's been difficult to brainstorm possible solutions and reasons for breakthru seizures. I'm very happy we started the diet as I believe it has had a positive effect on Max's seizures overall and his overall alertness. I would have started it sooner but Max didn't have a g- tube til recently and they told us he would be dehydrated on the diet without the g-tube because Max is not able to drink any liquids. Originally we also thought max was alergic to dairy and didn't give him any dairy except what he got thru pediasure. If your child is a good eater you could try some of the recipes ahead of time and see how he does. If he is g-tube fed then it won't be any different. The real difference is in fat intake which can be done in different ways. Hope this help, Joanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Thanks so much for your help. What kinds of foods do you give your son because I'd like to start giving Mason some now to see how he reacts because he loves sugar and he loves carbs thats why I'm thinking it might be hard for him. Can I still give him soy milk also? I know you might not have all the answers to these questions I'm just curious and its really helpful to talk to someone who understands what your going through. Also, the doctor said its a very involved diet and its very hard to do, do you find it very hard to do? Thanks again for your help. Chrissy Mom to Mason BF polymicrogyria, cortical vision impairment, seizure disorder > > Chrissy, > My son Max is 6 and started the ketogenic diet just this past August. > In the beginning he was seizure free for the first time for 3 weeks. > He went thru a couple of rough months where he lost too much weight > and was iron deficient but now things have leveled off. We went > down on one of his meds during the rough time and he usually has > about 4 seizures a day. For Max that is an improvement. He is > still on three meds. I actually think we can achieve better conrol > on this diet and so have an appointment set up to see the Dr.'s and > nutritionist at Childrens in Milwaukee. They don't do the diet very > often around here so it's been difficult to brainstorm possible > solutions and reasons for breakthru seizures. > > I'm very happy we started the diet as I believe it has had a > positive effect on Max's seizures overall and his overall > alertness. I would have started it sooner but Max didn't have a g- > tube til recently and they told us he would be dehydrated on the > diet without the g-tube because Max is not able to drink any liquids. > > Originally we also thought max was alergic to dairy and didn't give > him any dairy except what he got thru pediasure. If your child is a > good eater you could try some of the recipes ahead of time and see > how he does. If he is g-tube fed then it won't be any different. > The real difference is in fat intake which can be done in different > ways. > > Hope this help, > Joanie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 This question is for anyone. There was a movie on Lifetime about children/adults with epileptic disorders. It was very informative. All actors in the movie were epileptic. The ketogenic diet was highly recommended. At what age did you all start considering the diet. I am so tired of the Phenobarb/Topamax combo. My daughter sleeps all day and all night. She does not have a g-tube but I do find it hard to wake her for feedings. Any input is appreciated. Thanks Keasha kolbemaurice wrote: Chrissy, My son Max is 6 and started the ketogenic diet just this past August. In the beginning he was seizure free for the first time for 3 weeks. He went thru a couple of rough months where he lost too much weight and was iron deficient but now things have leveled off. We went down on one of his meds during the rough time and he usually has about 4 seizures a day. For Max that is an improvement. He is still on three meds. I actually think we can achieve better conrol on this diet and so have an appointment set up to see the Dr.'s and nutritionist at Childrens in Milwaukee. They don't do the diet very often around here so it's been difficult to brainstorm possible solutions and reasons for breakthru seizures. I'm very happy we started the diet as I believe it has had a positive effect on Max's seizures overall and his overall alertness. I would have started it sooner but Max didn't have a g- tube til recently and they told us he would be dehydrated on the diet without the g-tube because Max is not able to drink any liquids. Originally we also thought max was alergic to dairy and didn't give him any dairy except what he got thru pediasure. If your child is a good eater you could try some of the recipes ahead of time and see how he does. If he is g-tube fed then it won't be any different. The real difference is in fat intake which can be done in different ways. Hope this help, Joanie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 We're considering the diet too, as a way to normalize Sophia's EEG. She's almost 3 years old at this point. She already has seizure control, so we're having a hard time deciding if we want to put her through this when we don't " need " it at the moment. Here are some places where you can get more details on it. charliefoundation.org will send you a dvd called " an intro to the ketogenic diet " for $10. I haven't watched it yet, but it's apparently real parents talking about their experiences with it. I think the same person who made that also made a movie about his son's (Charlie's) experience, but I never saw it. Then there's a book put out by Dr. Freeman at s Hopkins called the Ketogenic Diet, and this is a main source of info for parents. It has a recipe section in it too. > Chrissy, > My son Max is 6 and started the ketogenic diet just this past August. > In the beginning he was seizure free for the first time for 3 weeks. > He went thru a couple of rough months where he lost too much weight > and was iron deficient but now things have leveled off. We went > down on one of his meds during the rough time and he usually has > about 4 seizures a day. For Max that is an improvement. He is > still on three meds. I actually think we can achieve better conrol > on this diet and so have an appointment set up to see the Dr.'s and > nutritionist at Childrens in Milwaukee. They don't do the diet very > often around here so it's been difficult to brainstorm possible > solutions and reasons for breakthru seizures. > > I'm very happy we started the diet as I believe it has had a > positive effect on Max's seizures overall and his overall > alertness. I would have started it sooner but Max didn't have a g- > tube til recently and they told us he would be dehydrated on the > diet without the g-tube because Max is not able to drink any liquids. > > Originally we also thought max was alergic to dairy and didn't give > him any dairy except what he got thru pediasure. If your child is a > good eater you could try some of the recipes ahead of time and see > how he does. If he is g-tube fed then it won't be any different. > The real difference is in fat intake which can be done in different > ways. > > Hope this help, > Joanie > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.