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Post by tara595 on Mar 6, 2020 15:20:51 GMT
Good morning - update on my DD with epilepsy. She's doing better. She's on steroids and a new anti-seizure medication that seems be really helping. The steroids have been tough because she is SO hungry and moody. Her last dose is next week, thankfully.
I've been reading a lot about how much the ketogenic diet helps with seizures. I'd like to try it, but I can't even imagine how hard it will be for a 3.5 year old to give up carbs! Does anyone have experience with this diet for children? If so, any advice?
thank you : )
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Post by katlady on Mar 6, 2020 15:29:39 GMT
Glad your daughter is doing better!
I would check with her doctor first, and get his approval and guidance. Keto is not really recommended for children. I have read that children need carbs for mental growth.
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Post by littlemama on Mar 6, 2020 16:10:48 GMT
I would consult your child's doctor before I began a diet that eliminated an entire category (carbs, fat, protein).
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Post by busy on Mar 6, 2020 16:35:05 GMT
Good morning - update on my DD with epilepsy. She's doing better. She's on steroids and a new anti-seizure medication that seems be really helping. The steroids have been tough because she is SO hungry and moody. Her last dose is next week, thankfully. I've been reading a lot about how much the ketogenic diet helps with seizures. I'd like to try it, but I can't even imagine how hard it will be for a 3.5 year old to give up carbs! Does anyone have experience with this diet for children? If so, any advice? thank you : ) I'm glad your daughter is doing better  I agree with getting your doctor's advice before making a change, but it is true that there's research showing benefits of a high-fat keto-style diet for people with epilepsy and related conditions. A cousin has a daughter with Dravet Syndrome, which is a rare, severe form of epilepsy and eating that way has helped her a lot. She was about the same age as your daughter when she started (as recommended by their Dravet specialist). It wasn't easy but her mom says it was worth it. Of course, this is just an addition to her medications, etc. Not saying it's some magic bullet or in lieu of treatment. |
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Country Ham
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Jun 25, 2014 19:32:08 GMT
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Post by Country Ham on Mar 6, 2020 16:41:34 GMT
I would check with her doctor first, and get his approval and guidance. Keto is not really recommended for children. I have read that children need carbs for mental growth. Keto is not zero carbs. It's healthy carbs. Children do not need bread, potatoes, candies. They will get carbs in veggies, and some fruit/berries etc. The benefits of keto were discovered because of children eating low low carb and improving neurologically. That was the primary purpose of this way of eating. |
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christinec68
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Post by christinec68 on Mar 6, 2020 16:48:32 GMT
I am glad your daughter is doing better.
My friend's son had a seizure disorder when he was little. The doctors tried to put him on a keto diet when he was about 3 or 4 but he just wouldn't eat the food. Not even a hot dog which he ate prior to switching his diet. So it is safe for children but I think it should be under medical supervision as the portions, macros, etc were very specific.
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teddyw
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Post by teddyw on Mar 6, 2020 16:51:57 GMT
I’d check with her dr too . That way you can get a referral to a nutritionist to help you.
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Deleted
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May 8, 2024 11:31:41 GMT
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Post by Deleted on Mar 6, 2020 16:55:18 GMT
Good morning - update on my DD with epilepsy. She's doing better. She's on steroids and a new anti-seizure medication that seems be really helping. The steroids have been tough because she is SO hungry and moody. Her last dose is next week, thankfully. I've been reading a lot about how much the ketogenic diet helps with seizures. I'd like to try it, but I can't even imagine how hard it will be for a 3.5 year old to give up carbs! Does anyone have experience with this diet for children? If so, any advice? thank you : ) Ask to speak with a team dietitian and nutritionist. There are specific guidelines to follow for Keto to help with seizures. They had training and classes and guidelines and regular weight check ins to make sure the children werent loosing weight I have 2 friends who tried. One who has a rare seizure disorder and has 50+ a day. I wish I could say it helped them but it didnt. For one it made things worse. For the other the child refused to eat all together and was already a picky eater due to SPD. I pray it helps your dd! |
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Post by busy on Mar 6, 2020 17:07:30 GMT
Just echoing what others have said, it's important to have professional guidance. Keto specifically for neurological conditions is not the same as keto as practiced by the masses for weight loss. It's *very* structured.
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Post by teacherlisa on Mar 6, 2020 17:14:07 GMT
Of course check w/ her DR. but I worked w/ a child while I was teaching that had epilepsy and went to John Hopkins for a trial for the keto diet. He was right around your daughters age. He was having hundreds per day prior to starting the diet.He was completely disabled, unable to walk, speak or anything. After starting the diet (and was watched very closely buy his medical team) they diminished to zero. it was a complete amazing transformation.
Side note, after getting home, he began having seizures again. His mom was beside herself because she was literally weighing every piece of food the child ingested. She could not figure out why he was starting to have seizures again. So, she "followed" him around and eventually saw him going into the dog house and eating dog food from the dogs bowl. Once she stopped that, the seizures stopped again.
He was able to start kindergarten w/ an aide for support, mostly for his medical/food needs.
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Post by tara595 on Mar 6, 2020 17:37:28 GMT
Of course check w/ her DR. but I worked w/ a child while I was teaching that had epilepsy and went to John Hopkins for a trial for the keto diet. He was right around your daughters age. He was having hundreds per day prior to starting the diet.He was completely disabled, unable to walk, speak or anything. After starting the diet (and was watched very closely but his medical team) the diminished to zero. it was a complete amazing transformation. Side note, after getting home, he began having seizures again. His mom was beside herself because she was literally weighing every piece of food the child ingested. She could not figure out why he was starting to have seizures again. So, she "followed" him around and eventually saw him going into the dog house and eating dog food from the dogs bowl. Once she stopped that, the seizures stopped again. He was able to start kindergarten w/ an aide for support, mostly for his medical/food needs. Wow! this is unbelievable! Our neurologist was the one who mentioned it while we were in the hospital. I will speak to her again at the next appointment. |
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Post by Katie on Mar 6, 2020 18:36:59 GMT
There is a documentary on Netflix called The Magic Pill, which I think you would really like. It talks about the keto diet and the benefits for it in treating epilepsy. They follow a couple of children with epilepsy and how the diet impacts their seizures.
It is absolutely safe for children. No doubt it would be a challenge for a young child, but it’s worth a try. I would think it’s one of those situations where you have to model the behavior to set an example. Sucks for you of course, but it would help.
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Post by tara595 on Mar 6, 2020 19:11:28 GMT
There is a documentary on Netflix called The Magic Pill, which I think you would really like. It talks about the keto diet and the benefits for it in treating epilepsy. They follow a couple of children with epilepsy and how the diet impacts their seizures. It is absolutely safe for children. No doubt it would be a challenge for a young child, but it’s worth a try. I would think it’s one of those situations where you have to model the behavior to set an example. Sucks for you of course, but it would help. thank you, I'll check it out! |
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Post by stormycat on Mar 6, 2020 19:15:28 GMT
Of course check w/ her DR. but I worked w/ a child while I was teaching that had epilepsy and went to John Hopkins for a trial for the keto diet. He was right around your daughters age. He was having hundreds per day prior to starting the diet.He was completely disabled, unable to walk, speak or anything. After starting the diet (and was watched very closely but his medical team) the diminished to zero. it was a complete amazing transformation. Side note, after getting home, he began having seizures again. His mom was beside herself because she was literally weighing every piece of food the child ingested. She could not figure out why he was starting to have seizures again. So, she "followed" him around and eventually saw him going into the dog house and eating dog food from the dogs bowl. Once she stopped that, the seizures stopped again. He was able to start kindergarten w/ an aide for support, mostly for his medical/food needs. Wow! this is unbelievable! Our neurologist was the one who mentioned it while we were in the hospital. I will speak to her again at the next appointment. It is a very strict monitored medical diet. There is a specific in house team that you start with as an admission to the hospital, There are specific foods you eat abs can’t have at all. You have to watch even all of your medications for what is in them. You have to weigh a d measure all food to the ounce. Some people have success with it abs some don’t. Usually it is used more for intractable (uncontrolled) Epilepsy it for those who refuse pharmaceuticals. If your Dr mentioned it, then speak with him again about it. It is a fairly large substantial commitment with little to no room for error. We have talked about it for my son, but we are only on our 2nd med and it works for us. In the Epilepsy works, if it ain’t broke don’t fix it. Glad to hear she is better. |
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Post by christine58 on Mar 6, 2020 19:33:05 GMT
Good morning - update on my DD with epilepsy. She's doing better. She's on steroids and a new anti-seizure medication that seems be really helping. The steroids have been tough because she is SO hungry and moody. Her last dose is next week, thankfully. I've been reading a lot about how much the ketogenic diet helps with seizures. I'd like to try it, but I can't even imagine how hard it will be for a 3.5 year old to give up carbs! Does anyone have experience with this diet for children? If so, any advice? thank you : ) Did not work for my cousin’s 2 year old. My niece who is a PICU nurse said that it usually does not work. |
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Post by teacherlisa on Mar 6, 2020 19:50:37 GMT
There is another movie about it that I thought of after reading Katie response. I believe it is called First Do No Harm, and it is very good. www.imdb.com/title/tt0118526/ |
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Post by stampinfraulein on Mar 6, 2020 20:36:41 GMT
It worked for a friend of mine and her young son. It was under the care of a doctor to ensure that he actually stayed in ketosis, and she had to be scrupulous about weighing and measuring his food. One thing I remember him having to eat was whipped heavy cream and they had a special rubber spatula they used to scrape the cups/dishes to ensure he was eating every single gram he was supposed to. It was extremely difficult for her--when he started school she actually had to go to the school each day to feed him his lunch because she couldn't trust the school staff to do it correctly. She couldn't leave him with anyone but her parents basically for the same reason. It broke her heart for him to be unable to eat any holiday treats, birthday treats at school, etc etc. But it worked--he quit having seizures and was able to go back to eating normal food!
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Country Ham
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Post by Country Ham on Mar 6, 2020 22:24:39 GMT
She couldn't leave him with anyone but her parents basically for the same reason. It broke her heart for him to be unable to eat any holiday treats, birthday treats at school, etc etc. But it worked- In reality it's not much different then having to adapt to having a child with severe allergies, children with type 1 diabetis, etc etc It's funny you mentioned the heavy cream. I don't whip mine, but that's my go to fat source after coconut oil. It's just a couple spoonfuls a day usually in coffee. Where many of us follow Keto for weight loss we don't require as much fats as these kids I bet, I rely on my body fat to fuel me. Kids on strict keto need to eat the fats to fuel their brains. |
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freebird
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Post by freebird on Mar 7, 2020 0:06:34 GMT
I would suggest watching "the magic pill". I think it's on netflix or prime.
I don't know if I would suggest giving up carbs, but I would give very healthy carbs in moderation.
What I would do:
No juice, bread, chips, tortillas, etc. Simple carbs.
Yes: a piece of fruit with lots of fiber, a sweet potato, lots of leafy greens, cauliflower/broccoli, etc.
I have mixed feelings about beans and rice. But I might do wild rice in moderation.
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azelizabeth
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Post by azelizabeth on Mar 7, 2020 2:45:14 GMT
I don’t give medical advice over the internet. That being said, talk to her neurologist or get yourself to a major children’s hospital. Keto has been proven effective, but a registered pediatric dietitian should create the plan and education. Good luck. It’s imperative to see a pediatric neuro doc.
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Sarah*H
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Post by Sarah*H on Mar 7, 2020 3:23:30 GMT
I agree with everyone else that you need to consult with her doctor before you decide anything.
I will also add that if you are concerned about her not finding enough things that she wants to eat, low carb today is not your mother's Atkins diet. There are so many products out there that with a little bit of creativity and effort, you can modify almost any recipe. You can bake cookies, make pasta substitutes, use almond or coconut flour to bread chicken or fish, there are infinite recipes for bread substitutes, pizza dough, etc. Manufacturers are hard at work making keto cereals, ice cream and basically a zillionty snack options. So if her doctor says it's okay for you to explore this, just give yourself some time to read recipe blogs, join some message boards, etc. Keto isn't all steak, bacon and chia seed pudding anymore so I'll bet you will find lots of recipes and foods that she would like.
ETA: Now reading the previous posts, I didn't realize that there is a much stricter version for children with epilepsy so feel free to disregard everything I just said.
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