| Off topic, but we have the best luck at yard sales! Check out Storm Trooper Max! |
| My mom took this picture because we thought he was so cute...none of us thought about his low energy. |
Ray and I learned a big lesson this week, we can never be too careful about the fuel for Max's brain. The Modified Atkins diet has become so second nature to us, that we became lazy with it. Max's meal choices have little variety, meaning he basically eats the same thing every single day. With out realizing it or talking about it, we stopped counting Max's carbs each day. It sounds crazy as I write this out, how could we have done this?! What kind of parents are we? How did we go from a dedicated note book, weighing most of his food and reading the back of every label, to just winging it?
I guess we just got too familiar with it and took Max's recent gains in health and energy for granted. I had noticed he was napping more (like his ability to fall asleep despite being a head to toe Storm Trooper), but I had not really thought much of it since we are doing so many activities that could indeed tire him. Thankfully, when on a diet like this, you have to be seen by doctors every three months for the first two years, then twice a year after that....my guess is it is for this very reason. Mistakes can be made!
Yesterday we got up bright and early, well not so bright, we had to drive through a snow storm, but we arrived at Children's hospital more or less on time. Max had his normal labs on order. However, my usually stoic boy had to be chased down and held down screaming for the blood draw. I made a mental note of it, but figured his behavior was due to fasting for the blood draw. However, he has had to fast before and he has never acted this way. Max is the king of blood draws. Next we headed up to meet with the neurology nurse and dietitian. The nurse had the lab results show up on her computer half way through our visit and her face fell. His blood ketone levels had dropped, a lot. This is a very big deal. Max's ketone levels = the amount of fuel his brain has to use. My stomach knotted up, I knew right away. It all made sense, the napping and the reaction to the blood draw. My sweet boy was low on fuel...and it was my fault. Mother guilt takes on a whole new level when your child has a medical condition of which you are in charge.
The nurse and dietitian were very kind about it, but they requested a blood draw in two weeks to check the blood ketone level again. I called Ray and told him about it before I was even out of the hospital. Then later at home, I watched Max take a two hour nap, that I had to wake him up from finally.
Ray and I went over all the food when he came home. Our negligence in recording his carbs was not the primary problem. The culprit, we believe, was changing food brands. The nuts from Costco have a different carb count than the Sam's club ones. The ham we realized, differed quite a bit as well. One package even said zero grams, which we know is not possible, zero can mean less than 1 gram, and less than 1 can easily add up in a hurry. So I reweighed all the food and broke out a Sharpie marker and wrote on every package. I got out a new notebook and we committed ourselves to turning this ketone dip around.
Today has been all about the three Bs, Brie, Bacon and Butter. Hopefully we will have his ketones up in no time and we will have an energetic and mood stable Storm Trooper.
I really, really, really hate having to learn things the hard way! This will be a lesson not soon forgotten.
Oh that darn mommy guilt. It happens to all of us - but learning the hard way is still learning - and I'm sure he'll be back to himself in no time. (and on a side note, your routine of weighing and measuring and knowing the content of things - I applaud you - I do NOTHING this way, so I would have a very hard time adjusting to a life like that - you're doing awesome)
ReplyDeleteRebecca, your honesty is so moving. Every Mom can relate to this story even if there child doesn't have a medical condition. I do believe that you are the perfect Mom for Max and I am praying for a quick turn around for Max!
ReplyDeleteIt's not easy to be an alert/aware full time Mom/caregiver. When things are running smooth, we often enjoy just being. You caught it, and have taken the steps to correct Max's diet. I hope you see a quick turn around and the next blood tests show marked improvement.
ReplyDelete(As a "special" child, I will tell you that medicine has changed "a lot" in my life time. There are persistent men & women doing research to conquer this disease. It takes time... and faith.) You are a woman of faith and will meet this challenge. The storm-trooper will be back into action in no time.
Hugs. ^j^ Mrs.C.
He's an adorable storm trooper. I hope you're not still beating yourself up...it's all a learning process, and we all have those moments. HUGS to you!!!
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