Hello,
We just talked to John Hopkins yesterday and Diana said after talking with my husband about Kayla that she is a perfect candidate for the keto diet. They have 1 slot left for June 1st which is right around the corner. We have to get Kayla's records sent to them and then we will schedule the diet. I am already nervous. We have not told Kayla yet but will probably tell her this weekend. I would like to hear from anyone who has done the diet and what to expect in the early days. I have heard some kids get really sick. Any info would be helpful. We are in the process of trying to sell our house and relocate to Oklahoma so lots going on right now. Feeling stressed thinking about it all. Would love to hear other stories of starting keto diet. Thanks Stacey
Tips For Starting the Ketogenic Diet
Stacey - that is wonderful news! You shared your story about a month ago and I know you have already been through a lot! You mentioned she is 8 years old, on 3 medications, tried the VNS and were looking at having brain surgery. Yikes.
The way they administer the ketogenic diet today is much different than when we started almost 14 years ago. Adam was hospitalized for a week and did a complete fast for 3 days before starting. I was freaking out that he could not eat for 3 days - but he tolerated it really well and actually became more clear headed and playful - so we spent a lot of time playing in the playroom at the hospital.
Adam was also 8 years old when he started. I think today they do not fast the children and do not even admit them anymore - it is more of an out-patient process. Getting used to the food was actually very easy. We did have to try several meals before we got it right though - then we made sure he was in ketosis and used only about 5 meals over and over again to ensure we were on the right track.
Don't think that you need to make the same meals - you can switch it up with the same ingredients. For example:
Meal ingredients: eggs, 35% cream, butter, bacon, fruit
Here are the meals we could make:
1. scrambled eggs with bacon, peice of cantaloupe and cream diluted with water to make milk
2. waffles topped with butter, whipped cream and strawberries or blueberries - side of bacon
Adams school lunch:
Meal ingredients: eggs, 35% cream, butter, bacon, cream cheese and jello light
I would pour the eggs into a small waffle iron, let cool, spread on half the butter, all the cream cheese. Add bacon and roll into two "sandwiches". I added water to the cream for milk, and froze the rest of the butter into a "cookie" (flattened with plate between two sheets of waxed paper) - can add some walnut shavings to the cookie - Adam liked it plain
He had jello with every lunch. You can also use it with the cream to make a jello parfait! See my tips here:
What he did NOT like, was trying to add oil to anything. We just used butter - period.
He LOVED the food. We never had any issues with the food and he did not get sick at all. His skin was like butter!
Keep it simple. Make it fun! Dr. Deborah Snyder has a great cookbook as well.
Here is my list of top 10 supplies you cannot live without!
Do not worry about how long it takes to learn - you will get faster! You may also need to tweak the diet for months before getting it right - that's why I recommend keeping it simple.
I hope this helps! I cannot wait to hear your progress. I would love to get a phone call from you when you start.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
604-538-6460
Waiting for Call From JHopkins
Thanks Arlene for all the info. J hopkins has received Kayla's records so now we are just waiting to hear from them to schedule the diet. Kayla will be in the hospital for 4 to 5 days. We will be telling her shortly about starting the diet. Since Adam was the same age how did you tell him. We are going to be very positive. I still hate to take away all of these things but hey if it helps it will be way worth it. Without the diet there is no plan to help Kayla. She is not at that point for surgery. I hope the diet does help but if not we can say we tried. Pray for us and for Kayla. We know this is the only option. It could be our answer to stopping Kayla' seizures. Thanks again for all the tips. I will keep you updated.
Telling kids about the ketogenic diet
Hi Staceylynn,
The most wonderful thing about the diet is that if it works, the kids feel so great inside and so much clearer in the head that they instinctually want to stay on it.
We told Adam is was a "magic diet that would stop his seizures". We told him he could not cheat and eat the same food he used to eat or he would have a seizure again. He only cheated a few times and yes, did have a seizure.
What we did is let him pick his meal - give him two or three choices. We also rewarded him for sticking to the diet - take him to see the trains, buy a new puzzle every once in a while. He was remarkably easy to please.
You should also see if you can set up a penpal with another child on the diet. I just got an email from another mom whose child is now seizure free (Julie and daughter MacKenzie). I know she is young, but a short note and picture every few months might be a good idea. Also take a picture of her when she felt bad having seizures and one of her when she feels good and keep them on the fridge for her to look at and remind her of why she is doing this.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
THANK YOU FOR THE GREAT ADVICE
Hi Arlene,
Thanks so much for all the advice. We did tell Kayla and she is excited about going on a trip with mom and dad on an airplane. I like the advice about getting them special toys and things when they do well eating. I got Kayla a journal and there is a chart that we can put stickers on as she completes her meals so i thought after she has completed so many we can go get a toy, or go to the movies, or go do something she would like. I also like giving them choices on their meals. It gives them some control which they need. I love the idea about the penpal. I have actually been emailing a lady whose daughter is the same age as Kayla and she did the diet and is seizure free. I have showed Kayla pictures of the girl so I think maybe that would be a neat idea to have them write each other. Great ideas! Thank you so much Arlene. I will keep you posted.
ketogenic diet
My daughter started the ketogenic diet in March and it has been a blessing. My 3 yr old daughter was diagnosed last september with doose syndrome. After many different meds. The doctor gave in and refered us to another neurologist who would do the diet. I have to say it has not been easy road. There are days that she still has seizures. They are not as often as they used to be, we can go a week to two weeks seizure free. We have not achieved full seizure control but its better than before. My daughter is able to focus to run and play like a normal child. These medications were making her into a zombie. The meals are easy to make and my daughter has adjusted to eating this way.
3.5 weeks on Keto Diet
Hello,
Well we have been on the diet for 3 weeks and it has been wonderful. We are having much less seizure activity. Also the doctor at Johns Hopkins took her off 1 med. She is doing well. The diet is not that hard. Just some extra planning. Kayla likes most everything so that is good also. No struggles getting her to eat. Week 1 she had 118, week 2 she had 63 and week 3 she had 41. That is amazing. We couldn't stand the meds. The side effects weren't good and none would work. We were getting no where. Her neurologist did not support the diet so we contacted Johns Hopkins and they have been great. We go back in Sept for a followup. We pray that the diet will continue to work but we are already pleased with what it has done. So your daughter is 3 and has doose? I have read that the diet works well for Doose? How quickly did you see changes? Where did you go to start the diet? I am so glad you have had positive results with the diet. My mission is to spread the word to as many people as i can about the diet because many doctors don't support it. Kayla's neurologist was ready to do brain surgery. Well hope to hear from you.
Stacey Little Houston Tx
Congratulations Stacey and Kayla!
You made my week! Congratulations on being on the diet for 3 weeks now. I know what an adjustment it is for the whole family and hugs to Kayla for being such a good sport.
You might find that she is not in full ketosis and some adjustments need to be made along the way. Different brands of whipped cream or bacon would cause a breakthrough seizure so it is important to get a good brand and stick with it.
I bet Kayla is feeling so much better inside and she probably thinks clearer and looks better as well. I am so proud of you both, I can't express how I feel. Great job!
And, you really took initiative to travel to get what you want and go against the recommendations of your doctor - that takes guts! I am very proud of you.
I cannot wait for updates! Send me a picture of kayla - would love to post it.
All the best to you both and email if you have any questions.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
Thanks Arlene for all the
Thanks Arlene for all the nice words. We are doing well. Kayla has been a real trooper throughout this whole transition. She did get an infection and is on Bactrim for 10 days. We actually have seen an increase in seizures. I suppose this is due to her infection Anyway doing well. We will keep you posted. Thanks for everything. Stacey