Epilepsy Foundation

My 2 1/2 year old son recently was diagnosed with epilepsy and they believe it is MAE (Doose Syndrome). Our first 3 drugs failed and we are meeting with a specialist in a week to talk about the Ketogenic Diet at Boston Childrens Hospital. My question, is there anyone out there that has been successful with the diet that has a Milk allergy. I know it says that the diet can be modified for someone with this allergy but I am curious to see what they use as a substitue to heavy cream. Any help would be greatly appreciated.

Tags: Allergy, Diet, Ketogenic, Milk, and

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My daughter is on the diet, but can't help you with the milk allergy. There are some great support groups on Yahoo, with many, many generous people with a tremendous amount of experience. Good luck!
Hi Amy, I have read other posts that recommend almond milk. The diet's essential high fat can come from oils (ie canola, olive, coconut) also nuts, fish, bacon and other meats have fat. A good dietician will give you specific lists and recipes too. I have read about the keto diet being very successful for your son's dx. Please stay in touch here - there are other moms that have gone through or are going through the same thing right now with their child. You're sure to hook-up, just keep checking back and asking more questions. We also have some good recipes in our "Recipes and Resources" Group :) Join us!
Susan
Last time Rachel was on the diet, about half of her meals didn't even use whipping cream. Lots of mayo, butter and oils.

Have they scheduled a date yet for your son starting the diet?

Good luck. The diet has helped so many!
There are lots of alternatives to cream.

With medical supervision, diets can be modified to use coconut oil, mayo, dressings made with/nut oils (walnut, almond), avocado, ghee (clarified butter), animal fats, etc. As Susan notes above, a good dietician will be able to provide you with a list of alternatives and guidelines.

We use very little whipped cream, or heavy cream for that matter, with Elsa. We suspect a dairy intolerance with her, so we make our own greek yogurt and creme fraiche and use these in limited amounts with the above alternatives.

Good luck!
Delaine
Thanks everyone.

We are going to Boston Childrens Hospital next week to talk about the diet. We are from the Albany, NY area. Any input from everyone on the best place for the diet? Any thoughts on questions we need to make sure we should ask or consider. We truly want the diet to be our next option.

The doctor we are seeing now is recommending either another drug (I think Felbatol), steroids, or the diet. Based on what we understand about MAE, it sounds like the diet is the right next option, although our current doctors are recommending another drug or steroids next.

Thanks again to everyone....this has been so hard and you feel so alone. This community is helping to make me understand and be able to remain strong for my family.
Amy
Amy, you may want to post on the "Parents Helping Parents" forum and ask about these other medications. The PHP forum is heavily viewed and you will get more experiences/advice there. I completely support your choice of keto, however. It's a seizure control diet (MAD) that has made the difference for my son, age 4. Another thing - you will never be alone managing this diet. We all help eachother here :)
Susan

Amy,

We are scheduled to start our Keto road at the end of April with a 3day (or 4) admittance to UCLA Medical Center here in Los Angeles. We are absolutely overwhelmed but trust our Ped/Neuro in that she thinks that our lil guy (3 y.o) is a very good candidate. I am scared to death but look at how he is on all 3 of his meds and would sing from the mountaintops is we could reduce those horrible meds. We were basically told that if we don't want to try the diet that we are in for a medicine rollercoaster as a lot of patients have to change up their meds when their body gets "used to" them and I am NOT ON BOARD for that! I hope to connect with more people doing Keto here. Esp. when it comes to how to get a 3 yo to eat it all! =) ha! I am looking forward to working with out nutritionist assigned to our case however as our first meeting went failry well. We have a parent "training" in March which I believe is like 3 hours and them admittance in April. I'll try to keep following you to see where you guys end up! =) Much luck & prayers to you!

Nikki,

 

Please check out Matty's story at the following URL:  http://epilepsyfoundation.ning.com/profile/AMYRUMENAPP

The diet was such a blessing for us even though it is hard for everyone involved.  But, I've been doing it now for a year and a half...and I would not change a thing. 

Please feel free to ask me any questions...I'd be happy to share any information with you.

Best of luck!

Amy

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