Diet Tweaking and 1st day of Preschool

Diet Tweaking:
We met with our dietitian today for a follow-up visit which I was very anxious about because I wanted her to tell me I was doing something wrong that was causing his latest spike in seizures.  Although she could not say for sure it was the diet or something else, she did find some things we needed to fix in administering the diet.  Thank Goodness!!  We have hope again! 

After reviewing our food journals from the last two weeks she discovered that Joshua is getting too many calories and too much protein and that causes his ratio to be lower.  By ratio I mean we want him at a 3:1 ratio which means three times as much fat as carbs + protein.  While his carb numbers were good, his protein was too high so that means his ratio was off.  And, although you do not have to restrict your calories on MAD (like on Keto) we do have a calorie goal and he was way above it and that can also cause you to have seizures.  So, we will now be monitoring and tracking his protein, calories, fat, and carbs for everything he puts in his mouth to try to stay within our daily allotments (we were only tracking carbs before).  She is restricting his hot dogs to two per day as he was getting too many calories and protein from them and reducing his goal of two KetoCals per day to 1 (which is a relief as we could never get him to drink 2).  She also switched part of his fat from coconut oil to butter because we haven't been successful in getting much of the oil into him so now we have a goal of 30 grams of butter per day.  Anyway, I created an Excel spreadsheet to track everything so we start tomorrow and will see if it impacts him in a positive way (I sure hope so). 

Joshua's blood was drawn earlier this week in anticipation of today's appointment and we have some good news.  His metabolic panel was all good and his acid levels have gone back to where they need to be.  Last time he was acidotic so we have been giving him 1 caffeine-free diet pop per day with baking soda in it.  We also have to give him 1/8 tsp. of salt by the end of each day as those two things help to fight off the extra acid in his blood.  She said both are working so we are to keep doing that.  Yeah!  She said his levels all looked good so we don't need to take them again for 3 months.  The bad news was that his blood ketones have gone down since our last blood draw (he was at 6 before, now at 1.4).  He is still in ketosis, but not to the level we want (4 or higher) so we have work to do there.  The blood ketone levels are more reliable than the urine ones I do at home so it is good to know what the blood level says.  We have work to do for improvement in this area so that gives me hope we can still get to seizure freedom on MAD. 

After today's meeting with the dietitian, the planned tweaking we are going to do and the help/suggestions/guidance from my online support group I am feeling much better tonight.  I have hope again that we will get there, but it just may take some time and some tweaking.  I have to remember not to beat myself and understand this diet is going to be a marathon and there will be ups and downs.  It was just so hard not to get excited when his seizures dropped so dramatically. 

I am attaching a link for a great article regarding the Ketogenic Diet.  It was written in 2010 by a parent of a child on it and it was published in the NY Times.  To date is the best article I have read on the diet and explains it very well.  Although we are not on the Keto diet, MAD is very similar and it will give you a good feel for what the diet entails for us.  I think everyone should read it and pass on the information as it has the ability to help so many other people. 

http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html

Preschool:
Today was Joshua's first day of developmental preschool and he did great.  I figured he would be scared with it being a new school and all new people and thought he may cry.  He was a little clingy to us for the first few minutes, but then began exploring the classroom by himself.  When it was time for us to go, he gave us a hug and was fine.  What a big boy!  And, I didn't cry either.  He He.  :-) 

We had already met his teacher (and she is great), but this morning we got to meet the teacher aides in his classroom as well and they were all very nice.  They sat Joshua next to a kid named Blake and by the end of the day the teacher said they were BFFs.  :-)  We also got to meet the school nurse as we had to drop off Joshua's diastat (rescue medicine in case of a grand mal seizure).  I feel comfortable as they have several other children at the school with seizures and emergency rescue plans as well.  If he has a big seizure there, they will know what to do. 

When we picked him up he said he had fun.  He got to play with play-doh, play on the computer and have snack (his words).  He didn't eat all of his packed snack, but most of it and his teacher said it wasn't an issue.  We took his helmet to school for the playground, but since it was raining they did not venture outside so no wearing his helmet today. 

I am relieved that it went well and that we got over the "1st day" hurdle.  He has been at his daycare for so long that I really thought the transition would be harder on him, but he is such a trooper!  We go back Monday and I think he will be looking forward to it.  He looked so darn cute wearing his backpack and carrying his lunch pail just like a big kid.  :-) 

That is it for today.  Goodnight!