Update

 I want to apologize for not updating sooner – fortunately, there isn’t a whole lot to report.

A while back, I mentioned that we were going to try B12 injections with Michael. Well, he got his first injection on April 15th – a smaller dose just to get him started. He handled it well so the following week, we upped his dose. The very next day, he pooped on his own for the first time in probably 3 months. We were very excited to say the least! We began giving him the injections at home, every 3 days and guess what? He started pooping on his own every single day, sometimes twice a day! We were very excited about this. The only problem was that with each dose, he became increasingly uncomfortable – he began grinding his teeth more than usual, yawning a lot, his stridor got worse, and we couldn’t get a smile out of him for over a week. We decided to skip his next scheduled dose to see if he seemed better and he did. However, the pooping stopped right away and we are back to giving enemas.

So, what we have learned from this is that the B12 definitely helped with his gastric motility and his ability to poop on his own. It also made him more alert and awake during the day. We also learned that the Methyl part of the B12 was basically building up when it should have been breaking down thus causing the increased agitation and other side effects. So we want to continue with the B12 because of the benefits but we don’t want him to experience the negative side effects. So the plan is to add in BH4 (Biopterin – a cofactor to critical enzyme pathways) to help him break down the build up of the Methyl part of the B12. We will then slowly add the B12 injections back in and keep him on the BH4.  Hopefully that will allow him to experience the benefits of the B12 without the negative side effects.

Our Naturopath is just amazing. He is so brilliant and cares for Michael so much. Once we get the B12 situation under control, we are going to begin IV flushes of Glutathione. Glutathione is a naturally ocurriung substance in our bodies but for Michael, we are hoping that it can help clean out the toxic build up in his brain. It is basically an intracellular antioxidant. With MLD, it is ultimately the build up of Sulfatides that kills these children. We are hoping the Glutathione can pass the blood brain barrier, get in there and do some “clean up!” It certainly isn’t a cure but it might help him function better, feel better or maybe delay the disease a little. That is, if it works. We’ll try anything (as long as it is safe and natural for the most part) if we think it will help Michael in the slightest.

Thank you for reading my more “scientific” post. I’ll try to update again soon. Here’s a recent picture of Michael – look how big and handsome he is!

 

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