looking for anyone who has used a Ketogenic diet for seizure control in tube fed children

Christine - posted on 12/27/2010 ( 11 moms have responded )

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I am mom of a 4 year old boy with Down Syndrome. At 15 months, he developed pneumonia and went into respiratory arrest. He suffered significant hypoxic brain injury and as a result has several seizues a day despite being on 2 different meds. He is also tube fed. The type of seizures he has are infantile spasms which we were told are difficult to control-he has had several changes in medication doses which work well for awhile but they gradually return. Our neuologist has suggested a ketogenic diet. I am anxious to hear of any stories anyone out there may have!

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Leslie - posted on 12/29/2010

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Our son was born with the cord around his neck (tightly) three times, compromising oxygen supply to the brain, and causing cerebral palsy, as well as a host of other repercussions. He also had significant seizure activity, the majority being Infantile Spasms...3 hour (or more) sessions of these (back to back) two to three times a day. We also tried medications, in various combinations to no avail. Finally, when he was about 5 yrs. old, with the support of his neurologist, we began the Ketogenic Diet. I read the book by John Hopkins University three times. By the time we met with the dietitian at the children's hospital, I was educating her on the final details. She had only read the book once. Anyway, we requested keeping our son OUT of the hospital. And, the doctor backed us up. We did the blood sugar tests and ketone level tests, as well as programming the exact calculations for a myriad of menus. Our son does not have a feeding tube, but neither does he chew. So, I would weigh the pureed ingredients (to 1/10th of a gram) and he would drink it. This was helpful, since every sip had the proper ratio needed, even if he stopped in the middle of the meal. It was immediately successful, but required some "fine tuning" along the way. He was on the diet for 2 years. And, remains virtually seizure-free to this day. He is now 12 years old. I would recommend it to anyone willing to put forth the effort. What I understood from our medical professionals is that the Diet is used LIKE they do the medicines...when they find one that works, they keep them on it for 1-2 years, gradually wean them away and maintain approximately the same control of the seizure activity that was held with the medication. We found this to be true in our son's case. Occasionally, a number of stress factors will lower his seizure threshold and he will have a breakthrough seizure. But, this is no longer the norm. And, the seizures are milder and shorter in duration. He has not been on ANY medications since we began the Ketogenic Diet.
I will pray for you in this endeavor. Please feel free to contact me, if I can be of further encouragement.
leslie.ainsworth@gmail.com

Erin - posted on 12/28/2010

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My daughter has been on the diet for several years now. She has a chromosome disorder called Angelman Syndrome that comes with severe epilepsy. Myoclonic seizures (like infantile spasms) were her most problematic form of seizures but she's had many types of seizures. She is also g-tube fed (she doesn't eat at all) and has also had respiratory failure.



Maggie went on the diet at age 4 after 3 meds had failed to control her seizures. At the time, she actually had good seizure control because she had just spent a month in the ICU on a vent and all those sedatives had wiped out her seizures! She had perfect seizure control for the first year. In the first year of the diet, Maggie went from high doses of 3 meds failing to control her seizures, all the way down to a low dose of just one med, and still had perfect seizure control! About a year later, she still had perfect seizure control but she had developed an appetite and actually wanted to eat food. She'd never had an appetite before so we took her off the diet, hoping that she'd had enough of a break from seizures that her epilepsy could just be controlled by meds alone. At the same time, she had a long nasty GI bug with lots of vomiting and diarhhea and I had resorted to Pedialyte to keep her hydrated, so she was no longer in ketosis by the time she beat that GI bug. She did GREAT for the first month off the diet but over time, they came back. Six months later, she was back on 2 meds, still had poor seizure control, and we were back on the diet. We have stayed on it ever since except for one brief break.



The diet has never been as effective for Maggie as it was in that first year. Over time, her epilepsy has come back but its never been as severe as it was before the diet. We've seen her off the diet twice and both times, it was immediately obvious that the diet is the only thing between Maggie and severe epilepsy. Right now, we only deal with seizures every 4-6 months, which is just an amazing improvement for her.



Maggie will likely be on the diet long-term. She has never had any interest in food so its easy to do with her g-tube. We actually did not initiate the diet in the hospital. Our doctor allowed us to initiate it at home with constant dietician support but only because I had researched the diet so extensively and was pushing so hard for it. Both times we have reinitiated the diet, we have done it at home. For Maggie, we started the diet by putting her on Keto-Cal formula and slowly decreasing the amount of carbs in the formula. (We added sugar to it to make a certain ratio of carbs to fat, then slowly removed the sugar until we got to the current 4:1 formula.)



Our provincial insurance covers the Keto-Cal. If your child has a g-tube, then insurance should cover the g-tube formula and this would be no different. For us, the ketogenic diet has really only entailed switching formula. Its wicked easy with a g-tube!



We still try to encourage Maggie to eat. The only foods she's ever been interested in were creamy and sweet, like custards and eggnog. Those are very easy to make ketogenic. For school holiday parties, I make everything from ketogenic mini cheesecakes to chocolate mousses to custard/cream tarts and pies. Maggie rarely even tastes them but I just don't want her to be totally left out from eating treats and her friends always love the treats. For birthday parties, I usually just bring a canister of whipped cream sweetened with a non-sugar sweetener like Splenda.



If you have a kid on the keto diet, check out the canisters for whipping cream from iSi. They whip the cream with a little presurized canister and then you can keep it for weeks in the fridge and its always perfectly whipped. They are just like what they use at Starbucks to put cream on drinks. Starbucks is also a good source of non-sugar syrups to make things like fizzy drinks or steamers, cream steamed with a syrup.



There are also other versions of the diet like the Modified Atkins and the Low Glycemic Index Treatment. I think that for a kid who doesn't eat much and has a g-tube, the strict keto with formula is the easiest. But for kids who do eat by mouth, the other diets are a good option. When Maggie has had periods of time with an appetite, we let her eat anything she wants with a glycemic index under 50 and that maintains her in ketosis and has not been a problem for seizure control.



Also, Keto-Cal comes in many forms. Here in Canada, we can only currently get the dry powder sweetened with aspartame, which I hate. They will soon have new single-use tetra-paks of formula, pre-made, that will be much easier for feeds on the go. In the States, you can get Keto-Cal unsweetened specifically for g-tubes.



Good luck! I hope it makes a big difference for your son! For what its worth, the diet has dramatically improved Maggie's seizure control, which also improved her sleep, her mood, her energy level and her development. She is still a child with profound disabilities but I think the diet really frees her to be much more like a normal kid. I don't think the diet is generally used long-term simply because most people can't tolerate it but we'll keep Maggie on it for as long as we can. Its the single most effective seizure treatment out there and its really been wonderful for her. We have not had any side effects from it.

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Fati - posted on 09/17/2011

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My name is Fatima Patel, a graduate student from the Department of Nursing at Depaul University. I would like to invite you to participate in my research study that investigates the Caregiver's perspective on caring for a child with epilepsy who has a gastrostomy tube (G-tube). You may participate if you are a parent of a child with epilepsy who has a G-tube. Please do not participate if your child is under 1 year of age or over 14 years of age.

As a participant, you will be asked to take a survey that will take about 15 minutes.
All your responses will be kept anonymous and confidential. You may decide, at any time, to stop taking the survey if you change your mind. The results from this research may be used to improve the education and training caregiver's receive regarding the G-tube.

If you would like to participate in this research study, please follow the link to begin taking the survey: https://www.surveymonkey.com/s/Y35N9NF

If you have questions, please contact me at fatimama1@yahoo.com or you may contact my research advisor Lori Thuente, at LTHUENTE

Jennah - posted on 03/18/2011

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My daughter has a history of infantile spasms, she was having about 40 per day. We started the keto diet about 4 years ago (She's now 6) right after she had her G-tube placed. Within 2 months of staring the diet her seizures faded and ceased altogether. She is still seizure free today, although her EEG shows she still has subclinical seizures. For us the diet worked great and we are thankful not to have to take medwhich were causing her to be drowsy. I would definitly recommend trying it.

Jennifer - posted on 03/16/2011

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I have a 15 mo old with Lissencephaly we are currently on Keto diet and it is being administered straight from the can of Ketocal formula via g-tube. Our local children's hospital here in Chicago has a very informal, to be polite, progam. We get alot of clarity (he has PROFOUND global impairment) out of him since starting, and I think it's boosting his seizure control for partial and generalized convulsive. It did not help him for myocolonics. Overall I think it has helped and it's really easy with the formula. It tastes a bit funny unless it is very cold. I just met another SN mom who's child is now responsive to Diastat for the first time. Prior her daughter had 4+ hr or went status.

Jennifer - posted on 03/16/2011

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I have a 15 mo old with Lissencephaly we are currently on Keto diet and it is being administered straight from the can of Ketocal formula via g-tube. Our local children's hospital here in Chicago has a very informal, to be polite, progam. We get alot of clarity (he has PROFOUND global impairment) out of him since starting, and I think it's boosting his seizure control for partial and generalized convulsive. It did not help him for myocolonics. Overall I think it has helped and it's really easy with the formula. It tastes a bit funny unless it is very cold. I just met another SN mom who's child is now responsive to Diastat for the first time. Prior her daughter had 4+ hr or went status.

Alycia - posted on 12/30/2010

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My child has never used it but I have a friend (on another board) who's son (2 years old) has been on a ketogenic diet for about 10 months. He was seizing like daily and he's been seizure free for months now.

Christine - posted on 12/29/2010

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Erin-thank you for sharing your experience. We are undecided as yet as the seizures are pretty well controlled at the moment with meds. Keep thinking I would love to see what Hayden could do without them or at lower doses! What province do you live in that you have coverage for the ketocal? In Sask we don't have coverage for formulas, just the supplies for tube feeds(buttons, pumps, etc). I agree with the strict gtube feeds while on the diet-would definately be easier. My son will take a bit by mouth but not sure I should push that if we plan on the diet. Thanks so much for your input!
Erin- my son is also on Clobazam but is at the higher end of the dose range for his weight. Glad it is working for your son! Made a difference here too but my son seems to develop a tolerance after several months then it doesn't work as well.

Erin - posted on 12/28/2010

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my son was on the diet at age one. It did not work for him. Poor boy was starving. However, it does work for some kids. The best thing we did for our son was put him on a medicine from Canada called Clobazam. He went from a zombie from all the drugs to a little boy with a personality and a huge smile. His seizure went from 4-5 a day to 1 or 2 a week. I hope the diet works for your son.

Amy - posted on 12/28/2010

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Hi, my daughter has been on the ketogenic diet for one year now. She was having seizures every five seconds (myoclonic). We tried volproic acid first and it cut her seizures in half but would slowly return as well. Within two months of diagnosing her seizures I forced her neurologist to put her on the diet because I knew that the cycle would continue (from reading other parents posts). Within two months her seizures began to reduce and within six we saw only a few. Now we have not seen a seizure since June. The diet must be initiated in the hospital and needs commitment. We found that many parents say that tube fed children were soon able to eat solid foods! She has improved so much since. Although she is significantly delayed still she now notices her surroundings and even says Mom! Although the diet does not work for every child, we find that it worked a miracle for ours. If you do have any questions if you start the diet you are welcome to contact me amywoolvett@thecoastguard.ca
Ask the dietitian for a milk/cream recipe because ketocal is very pricey. (although it helps at the beginning of the diet to keep the child in high ketosis)
I fully recommend this diet for uncontrollable epilepsy.

I have heard with IS that the diet or ACTH work best.

Good luck!

Iridescent - posted on 12/28/2010

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I have not, but I know there are some members on a Facebook group I am a member of which do. I don't know specifics of how or how successful it is. The link to this group is http://www.facebook.com/home.php?#!/group.php?gid=7861746969 - just copy the entire string and paste it in your address bar. It's name is Children With Feeding Tubes, with a picture of a little girl, and you do need to request membership as we've had problems with spam.

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