Since Dean was about 4 weeks old, we've, well, experimented with various supplements to help him with aspects of PWS that might hold him back. For instance, babies with PWS tend to be *very* fatigued and low-energy, sleeping more than typical babies and less alert when they are awake. We started supplementing with CoQ10 and within 24 hours, Dean was noticeably more alert and had more energy. There was no guessing what had done it.
The effects of other supplements have been more nebulous. For instance, we used L-carnitine (in the form of carnitine fumarate) when Dean was younger. It's good for kids with low muscle tone and some metabolic issues, from what I understand. Did nothing for Dean. Not.one.thing. So we stopped.
We've continued to tinker with the balance of these supplements, on top of his prescribed medications, for Dean as he has gotten older. I suspect (as do others) that there are more metabolic components to PWS than we think, and it makes sense that supplementing the body with what it needs (either because it is naturally deficient or doesn't utilize it properly) helps. Or, *could* help.
We tried oral B12 when Dean was a little younger and noticed that it helped with energy and having more defined sleep/wake states. Then that seemed to wear off as Dean got older.
So, as we do from time to time, we stop and ask ourselves if a supplement is doing anything anymore or at all. We might stop and then restart at some point, or just stop for good and see what happens. More recently, we revisited the B12 issue and decided to try something that Dr. Miller and others have discussed: B12 injections. We weren't crazy about adding another injection to Dean's nightly GH injections, but if it was going to be worth it, might as well try. B12 injections are often used in children (maybe adults, too, I don't know) with ASD, although it's usually a different form of B12 and is given using a different protocol. All that to say, it's not a new idea.
Fortunately, the injections are only monthly at first, possibly up to every 2 weeks if necessary. And it's not a huge IM needle, just a little subQ one, so definitely less traumatizing for Dean and for Mommy and Daddy.
We gave Dean his first injection on the 6th and within a day, we noticed HUGE changes. Dean was more chatty, had this sparkle in his eyes that I hadn't seen in a long while, had noticeably better balance (Dean falls a lot, so when he suddenly starts catching his balance frequently, it stands out), had more energy, and was a FAST little runner out of the blue! We knew it was the injections. Undeniable. So, we are going to continue to monitor how his body responds and adjust our treatment as necessary. But it was really exciting to know that there is potential there to help Dean get through his life activities a little more easily.
Unfortunately, there are a few downsides to the B12, assuming that this is what it is. Others report that, because B12 acts on the nervous system by increasing myelination and other effects. What might this feel like in a kid who has not felt his nervous system be so alive in his life? It could be overwhelming. Dean has been VERY sensory-seeking out of the blue, and it has happened right around when he had his injection. It is something that will likely (hopefully?) fade in time, but for now, it's hard to see him have a hard time with his body while it's also yielding such great benefits. We will continue to monitor all these effects and decide what is best for Dean! But just wanted to report our results thus far; they have been overwhelmingly positive, so long as the negatives do not persist or increase much longer. Would love to hear from anyone who has used these for their loved one!
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