Wednesday, October 29, 2014

Health update

I figured since I haven't posted in a while I'd get myself back on track with a health update on Will.

I previously posted about how the beginning of the school year was a huge drain on Will - physically, emotionally and mentally. He wasn't coming home with his usual spark in his eye. More so he was coming home tired and struggled to make it through dinner, bath and bed. He also decided to stop sleeping in his own bed and would melt down at night too. One day at school he fell out of his chair twice.

I had gotten myself so worked up that I scheduled an appointment with Dr. Koenig to go over next steps because whatever was going on was NOT working. Randomly, we had seen her at a train expo in town one weekend. At that appointment she pointed out that he looked terrible at the train expo - I agreed. While he had a lot of fun, he just looked terrible. Physically off, bags under his eyes, labored talking.

Thankfully, it has gotten better. He is now fully adjusted to school and how much it's going to take for his body to keep up and we've added in some "stuff" to help him.

We had an appointment with Dr. Koenig last week and she said he was looking much better, great in fact, and was pleased to see that he was able to adjust.

So what did we change? Well, bed time is now 6:45 - 7 p.m. No "screen time" after dinner and try to relax as much as possible on the weekend.

We've pretty much been hibernating since August. Very rare are play dates or special outings for Will.

We also added in a supplement called Cytontine, it's 15 MLs every morning of some nasty thick sugary looking orange pineapple flavored "crap" from a company called Solace Nutrition. Per the website it's a medical food product that is supposed to increase ATP production giving you more energy and eliminate toxins. I have no idea if it's working or not.

We also are doing something simple. Have you seen these Gatorade Energy Chews? They are probably the biggest gimmick in the world, but whatever, I'm trying it. Gatorade Energy Chews

He thinks it's a piece of candy with his AM snack. In fact, this sleep deprived mom sent ONLY a Gatorade chew for AM snack today, leaving his real food in the fridge. (see above comment "Will quit sleeping")

We have quite the morning meds list - short in comparison to many other mito kids....
-EPI-743 trial drug
-2 MLs of levocarnatine
-15 MLs of Cytontine
-2 "poo poo pills" aka a probiotic to keep his gut running
-1 capfull or miralax
-"ice cream pill" - this is actually sodium pyruvate. There are no liquid forms and since Will can't take pills I pull apart the vegetable capsule and then carefully squeeze the powder on a very thin layer of frozen yogurt, then put another thin layer of fro-yo on top and voila! Ice cream sandwich.

Depending on how pleasant of a mood Will is in, this process can take anywhere from 5 minutes to 10.

So to wrap up my rambling post... We are slowly and happily coming out of a hibernation period with Will back at baseline.

We had a special "Halloween" adventure to my parents house the other weekend for a sleepover which included pumpkin Mickey Mouse pancakes, pumpkin butter and pumpkin ice cream... 


  1. Sweet pictures! Glad to hear he is adjusting a feeling a bit better!

  2. So good to "see" you and grateful Will is adjusting to school and new routines and feeling a bit better.

  3. Being a mom who also deals with the laundry list of meds, vitamins, and med foods, I just have to chime in. Cytotine is a brand of creatine monohydrate. We tried it last year. It tastes awful and I knew there was no way my daughter Megan would drink it. It also has a nasty aftertaste that would not go away. We tossed it out and went back to creatine monohydrate in a pill. We use KreAlkaline, and empty a 750 mg pill onto a cutting board, cut it into thirds and mix about 250 mg in yogurt or applesauce. It appears to have no taste.

  4. He is such a beautiful boy. I love seeing new pictures of him since i don't get to see y'all around school. Grateful for this update. I was worried after reading about him falling out of his chair at school. I am glad things are looking up and that you have such a great proactive doctor in Dr. K. I know you get tired of hearing how amazing you are, but you are handling this like a boss Lori. Seriously. I wish there was something we could do to lighten your load a bit. (If there is, holla at an old friend. I'd love to bring y'all some dinner sometime or something). So many of us out here rooting for the Martin family. Thanks for keeping your adoring fans in the know. Also, pumpkin pancakes for the win! I bet those were awesome. Big hugs to you all!