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, May 7, 2012

First Two Days on MAD Diet

Well, the first two days on MAD have been completed and the good news is that we survived.  The bad news is that Joshua refused to eat most things resulting in him being hungry, irritable and lethargic. 

Saturday morning I made him scrambled eggs w/ cheese, cantaloupe w/ whip cream (heavy whipping cream that you mix into whip cream) and "milk" (heavy whipping cream diluted with water and some liquid sweetener).  He refused to eat everything and it took me about 45 minutes to prepare and weigh everything.  For lunch I made him a hot dog and he ate about 1/2 of it, but nothing else.  For dinner I made him a Keto pizza and he took one bite of it and spit it out.  It took me an hour to make his pizza.  We ended up giving him chicken and he ate some of that, but refused everything else (green beans & "milk").  He even refused to eat his Keto ice cream which I thought he would like as it's a good way to get them to eat their cream. 

This morning I gave Joshua low carb pancakes that we made yesterday that took a lot of time.  Joshua took one bite and promptly spit them out and refused to eat anything else.  I asked him if he wanted eggs or any thing else and every time I was told "no".  Two mornings in a row with nothing to eat.  I did get him to eat a snack today of Sugar-Free Jell-O and whip cream (to get some fat).  For lunch today we tried Low carb mac & cheese which is with "Miracle Noodles" that have zero carbs and calories.  I made a low carb cheese sauce to go on top and thought he would really like it.  At first he would not even try it, but after a lot of prompting we finally got him to taste the sauce.  He liked that so had a little bit of the mac & cheese, but not a lot.  We did get him to eat a bunch of fresh mandarin oranges today and that is where most of his carbs came from today.  For dinner I made hamburgers with cheese (no bun), broccoli and carrots.  I think he only had 1 or 2 bites of the hamburger, but did eat the broccoli.  He took a carrot, but spit it out (not sure what that is about because he likes carrots).  I am not sure if his taste buds are changing due to the meds.  I made Keto root beer floats for desert, but he fell asleep on the couch while waiting so he didn't get to try them.  But, Cole and Mom gave them a big thumb's up. 

I spent all weekend cooking and planning and don't have a lot to show for it as he didn't eat much and spit out the stuff that took a long time to make, but  I will keep trying!  Joshua was REALLY lethargic, sleepy and loopy today and I was told to expect that in the beginning as their bodies adjust and I'm sure the meds have a bigger affect on him when he is not eating.  He also complained a lot that his stomach was upset (again, probably from meds on an empty stomach).  He didn't want to do anything and was so tired.  We took him to the park and he didn't want to play - he just sat in my lap and snuggled.  We took a walk and he could not walk far at all - I had to carry him for part of it.  I hope one day I will get my obnoxious, full of life little boy back.  I think back to December and how he was and it is hard for me to see where he is now.  I just don't know how all this happened and I'm staring at a boy who can hardly make it for a quick walk and I don't understand it.  I hope the diet is the key to getting him back.


His meds are also different as the Zonegran was a liquid and is now a capsule that has to be put into a drink and in order to do that we had to increase it a little.  Our neurologist also increased his Zarontin dosage to 4 MLs twice a day and wants to go to 5 MLs starting next week.  The Zarontin is also a liquid, but we cannot change over until he learns to swallow pills, which she wants us to teach him over the next couple weeks (sigh - one more thing to do).  His Depakote is staying the same (for now). 

He did take his multi-vitamin (thank goodness), but I still need to get his Calcium and Citra K (to help with kidney stone).  I need a bigger pill box for him now as there is so many to take daily between the meds and the all the vitamins. 

I was supposed to take him to school tomorrow, but not sure I can with how he is feeling.  I am also afraid he will be so hungry he will take someone else's food at snack time or lunch.  I will figure out in the morning how I am feeling and decide if I am going to take him or keep him home and try to work at home.  Chip is on 12 hour shifts this week so he cannot watch him like he normally does. 

Right now the computer program and all the numbers are so overwhelming and the Dietitian told me to concentrate on his carbs so right now my #1 priority is to keep his carb count where it needs to be for the day and see where the other numbers fall out while I get a handle on it.  I am also trying to push the fat through the cream, but we are not even close to where we need to be, but we will get there.  I also don't have the Keto Cal yet so will be ordering tomorrow and will start as soon as we get it (I have to call a special number to order it and hope that my prescription has been processed for it). 

I hope to report next week that things got easier because he got hungry and started eating.

Michelle

No comments:

Post a Comment