Ketogenic diet to help control epilepsy in children

Posted by mmas @mmas, Jan 11, 2017

Hello, we will soon be starting a ketogenic diet with our daughter. It's the modified Adkins diet, so not quite as strict as keto. Was wondering if any other parents have experience with this? Looking for kid friendly recipes. What has your experience been with this? Thanks.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Hi @mmas, Are you starting this diet to help control epilepsy?

REPLY

Yes. She has had two brain surgeries and has been on multiple medications. So we will give this a try!

REPLY

Mmas, I took the liberty of moving this discussion to the Epilepsy & Seizures group.
I'm tagging @ketomom @clairesmom who have discussed diet and managing seizures, in particular the keto diet and a low glycemic index diet. They may have some kid-friendly recipes to share, as well as their experience with diet.

You may also be interested in this discussion thread:
- Connection between depression, epilepsy and nutrition http://mayocl.in/2j2C6TB

mmas, we look forward to learning more about you and your daughter. How old is she? Would you be willing to share more about the surgery and treatments she's had?

REPLY

She is 4 yrs old. At the age of 7 months she started having seizures, infantile spasms and focal seizures. She has cortical dysphasia to frontal and possibly temporal lobe. She was on numerous medications and nothing worked. She had her first brain resection at 19 months. After that surgery she was a whole new person. More aware, more active but the focal seizures persisted. So, we tried a different combo of meds but new she would probably benefit from another surgery. So, second resection a year later. After this surgery she was also much better but now she had a right side deficit. They didn't remove the motor area but went really close. Today her right side is much better but fine movements with her hand/fingers aren't great and she wears a brace on her leg. She has PT/OT/speech/ABA therapies. She just starting talking a year ago, because her "speech" area in her brain was probably compromised so she has to relocate to another area. She now can string 3-4 words together. The communication has been hard because you can't teach your child to talk. We have been potty training since last March and just recently have seen a break through with her understanding/communication which is encouraging. She has a little sister who is 2 so that seems to help with her communication as well.

She probably averages 4 seizures a month. Her typical seizure is in sleep usually and she twitches on the right side. She is responsive and comes out of them after 4 mins. When she has been sick w fevers her seizures are much worse, she stops breathing and turns blue so we have had to give diastat.

So, starting the diet hopefully we can get her off maybe at least one medication or at least "tame the beast." She is currently on Depakote, Trileptal, and Vimpat.

She's only 4 and has her whole life ahead of her so if anyone has anything they have tried I would love to hear about it. We have also been considering the marijuana oils.

REPLY

@clairesmom we are putting our daughter on modified Adkins diet (similar to keto). I was wondering if you would share some recipes? Or books/websites you have liked?

REPLY

We have several recipes and ideas. Here is a website that can also help with diet: http://www.charliefoundation.org

One of my daughter's favorite recipes is french toast (yes, with syrup). We purchase: Sami's cinnamon raisin bread (net carb 2 in one piece) and we use Walden Farms pancake syrup (zero carb). Recipe: 1-Mix 6 eggs with about a tablespoon of sugar free milk substitute (we use almond milk) and 1 tsp cinnamon and 1 tsp stevia (we use Sweet Leaf). 2-Dip Sami's bread in mixture to coat and fry. We use pam to coat pan, or you can use smart balance (a healthier spread). My daughter drenches the bread in Walden Farms syrup. It is a zero food and tastes like the real thing.

Sami's bread can be purchased online or at Woodman's grocery stores: samisbakery.com
Walden Farms can be purchased at several grocery stores as well as at: http://www.waldenfarms.com/

*Our Christina has been on the ketogenic diet (started when she was a baby on formula) and has also been on a version of the original diet called Low Glycemic Diet Index Treatment (also lovingly known as a version of the South Beach Diet). It keeps her seizure-free mostly, she is also on a low dose of an anti-seizure med. She is now 19. We have many more recipes and will share more when I have time. 🙂

Here is another book with recipes that might help: https://www.amazon.com/Fighting-Back-Fat-Erin-Whitmer/dp/1936303450

REPLY

Thank you so much! Yes, please share your favorites when u have time. I have been experimenting too. I think the hardest will be the snacks and occasional sweets. I would appreciate any guidance! I just ordered the syrup thanks for the website!

REPLY

Hello! Yes. We love the Charlie Foundation website! Keto diet is much stricter with protein than the MAD diet but you could probably get some useful recipes out of this book. We are on a low enough ratio that this book works well: https://www.amazon.com/gp/product/1936303779/ref=oh_aui_search_detailpage?ie=UTF8&psc=1. I make up a lot of my recipes and calculate it out by hand. We love to cook and our daughter has a well-developed palate so we love to include her in all the meals that we have.

REPLY
Please sign in or register to post a reply.