Doose Syndrome

Myoclonic-Astatic Epilepsy (MAE) or Doose Syndrome is a rare form of childhood epilepsy that contains many seizure types and is difficult to control. Our journey started in January 2012 and this blog is to let family and friends follow us on our journey. I hope this blog also helps educate people about epilepsy and Doose Syndrome.

Michelle

Monday, July 9, 2012

Keto Pizza

Joshua ate Keto pizza tonight!  This was a major accomplishment as we tried this pizza on his first day of MAD and he spit out the first bite, said "yuck" and has refused it ever since.  One of the support group Moms told me to stick with the basics for the first few months as the kids still remember what "real" pizza and other foods taste like for awhile.  I guess he has either forgotten what real pizza tastes like or he is sick of hot dogs, hamburgers, sausage and eggs.  He ate the whole thing and asked for seconds, but of course he could not have more or he would have had too many calories.  I was fighting back tears as he was eating the pizza as we have just come so far in two months and I'm so happy to be finding more foods that he will eat.  I know if we are going to keep this up for two years we need to find more things he will eat.  Last night he tried and liked Keto tuna patties and he had those again for lunch today.  For those of you curious as to what goes into a Keto pizza here are the ingredients (4:1 ratio = 4 times as much fat than carbs+protein).

- 30g egg whites, whipped into stiff peaks
- 17g macadamia nuts, ground
- 15g mayonnaise
- 13g olive oil
- 14g canned tomato puree
- 9g Parmesan cheese

To give you an idea, 17g of macadamia nuts is about 6-7 nuts.  Portions are much smaller than normal meals, but Joshua hasn't been eating much for awhile so today was a pretty good day. 

We also made a Keto dessert tonight, but he didn't like it.  Oh, well - we can't win them all.   He has been looking at the cook book and pointing to pictures of stuff he says he likes so we will start trying more of them and hoping we find some more things he likes to eat. 

More seizures today than we have been experiencing - total of 12 today.  It is a bit upsetting as we have been around 5 or less for several days now, but he did have more protein than he should have while we were camping so perhaps that is to blame?  It could also be the heat - I have heard from other parents that when the outside heat temps rise that some kids have more seizures so maybe that is it?  I'm not quite sure the cause, but hopefully it will go right back down again.

Here are a couple pics of Joshua tonight. 

Chopping up the macadamia nuts in "the chopper"


                                                                             Still chopping - lots of chopping

Enjoying his pizza

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