Anyone have a child who is trying the Ketogenic Diet?

Tiffany - posted on 12/14/2009 ( 15 moms have responded )

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My daughter is 13 months old and has been having seizures almost everyday since she was 5 weeks old. We just changed doctors and we are in the process of switching her medications around. Before we switched doctors she was on Phenobarbital, Levetiracetam (the generic of Keppra), and Clonazepam. Right now we are fading out Phenobarbital and introducing Topiramate (the generic form of Topamax). I was told that if this medication doesn't work that we will be trying the Ketogenic Diet next. I have not done a lot of research on this diet yet and was wondering if there was anyone out there who has a child that is trying it?



Tiffany, MO

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Angie - posted on 01/04/2010

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My son (now 8) was on the diet for 3 years it was the best control he had - no meds worked well. We took him off it for a few months but put him back on it because the seizure control was so much better and less meds is always better.He is currently taking depakote,clonazipam,and keppra and we have got much better control again,not sure why but less is great he is actually learning to read and spell finally!

Amy - posted on 01/26/2010

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My daughter is 17 months old and started the diet at 15 months. She has done wonderfully she was having seizure activity every five seconds and myoclonics once every five minutes. She was taken off all meds last week and still we only saw about one or two startles the whole week. Her energy is changing too, she is interested in her surroundings now and starting to laugh. Huge steps!

Patty - posted on 01/11/2010

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I'm not sure we could have done the Ketogenic Diet either. All the measuring and forcing children to eat all of every meal. Restricting their total calories. For us, the Modified Atkins Diet has worked great and studies show it is getting about the same results as the Ketogenic. With MAD, you restrict the carbs and increase the fat. Our son eats unlimited amounts of meat, tuna, chicken and carb free cheese sticks. We keep his carbs around 10 g/day. He gets the bulk of his fat from shakes we make from cream, cocoa and stevia or cream, strawberries and stevia. He also eats a lot of may with his chicken, hamburgers or tuna. We still are able to eat out - we just order a grilled chicken sandwich or deluxe cheeseburger without the bun. Our son rarely asks for foods that he can't have.

Stacy - posted on 01/10/2010

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we tried the ketogenic diet when my son was 8 (10 now) it was horrible for him, and we noticed very little change, BUT we noly did it for a short time with the restrictions and his age I could not watch this struggle, he fought it daily, refused to eat and vomited alot..... BUT there is a liquid form it is like vanilla baby fromula, with her being so young this may be an option. MY ADVISE try it, but do it while she is so young ....take a look at the solid food plan, and you will understand why I say this.... The statistics on this diet are very good. Can't hurt to try.

Becky - posted on 01/07/2010

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Hi Tiffany. My daughter started the diet at the end of November 2009. She previously was having 8-12 seizures a day. She has had absence, myoclonic and complex partial seizures. She is on keppra and depakote right now but will hopefully wean at least one of them once she is stable on the diet. She is three years old and she is able to tell me how much better the diet makes her feel. It has been a wonderful thing, well worth your consideration!

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Teresagann - posted on 05/10/2014

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Wow! My baby just got diagnosed with this! She's exclusively breastfed, and I am so worried! How did your baby do on starting the diet?? Was it an easy transition? I would love to talk with you!!

Teresagann - posted on 05/10/2014

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Did any of your kids get genetic testing or a spinal tap done??? My baby has Glut 1, a genetic disorder. She was misdiagnosed with myoclonic epilepsy at 4 months old. Anyways... Very long story! These are her symptoms... Hypotonia, myoclonic seizures (jerks), rapid eye movement, lethargy, lack of coordination. I would DEMAND genetic testing! Anti-seizure meds in most cases do not work for this! The only thing is the ketogenic diet. The sugar in the meds actually make it worse!

Momy - posted on 07/25/2013

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my kid is 4 years old he start having seizures he diagnosed infantile spasms when he was 7 months old he is still on 4 meds right now but seizures are not controlled much.....i want to try ketogenic diet....he is developmental delay....he doesn't even sit because of low tone....please help me

Kathleen - posted on 01/06/2010

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My daughter started having seizures at 2 days old and has been diagnosed with Glucose Transporter Type 1 Deficiency Syndrome. She has been on the Keto diet for about 3 weeks now and has not had a seizure since starting the diet. As your background sounds similar to mine, you may want to check into testing for Glut1DS. It is a rare metabolic disorder where glucose cannot pass through the blood brain barrier and so the brain is starved for energy. The way that energy is supplied to the brain is through the Ketogenic diet. It is extremely rare but it is worth a shot. Here is a link about the disorder. http://www.ncbi.nlm.nih.gov/bookshelf/br...

Keena - posted on 01/03/2010

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Tiffany
We are currently one the keto diet have been since october of 07 before that it was the modified atkins diet for 6 months my daughters seizures went from 218 in august to 13 in december she is still having a few here and there it has been tough but so worth it i would recomend this diet to anyone

Amber - posted on 01/02/2010

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My son has been on the ketogenic diet since August and we have seen a drastic reduction in the number of seizures he has. He went from having hundreds a day down to 1 or 2 a week at one point. We recently had a solid three weeks seizure free. I attribute it to the diet and encourage anybody that can do it to at least give it a try. You have a 2 out of 3 chance that it will help your child.

Patty - posted on 12/18/2009

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We are on a variation of the Ketogenic Diet called the Modified Atkins Diet. On it, we have been able to reduce our son's number of seizures and we had him off of all meds. Now, we are keeping him on the diet and trying a new med. I would definitely recommend it. Anytime I have the option of using a diet instead of antiseizure drugs, I will try it.

Laura - posted on 12/16/2009

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I have a 2 1/2 yr old with undiagnosed seizure disorder, developmental delay, cortical blindness. aquired microcephaly, 100% gtube fed.....He has been on the ketogenic diet for over a year....we have seen amazing results....he used to have hundreds of infantile spasms a day....now only a few......his tone is tons better and generally the diet has made him alot more comfortable.....he is gtube fed and is on the ketocal 4:1 ratio formula......

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