Supplements

This is a big topic for those with Prader Willi Syndrome. Ayden Jane seems to be a 'high responder' to the supplements. I don't think anyone knows why some of the kiddos respond to supplements and others don't, but Dr. Miller refered to Ayden Jane as a 'metabolic kid.' She said it could be tested but that would require taking AJ off of everything and then doing some blood work... Since AJ is doing so great that would just be CRAZY so the fact that she responds is proof enough.

I will try to go through our list and give my rational and timing...

Schiff Liquid multivitamin: I think this was our first supplement and it just made sense that if they are not great at eating and absorbing nutrients I needed a good over all vitamin. We started giving her the 10 mls/day divided morning and night at 9 mo. (remember we did not even get a diagnosis until 8+ months)

CoQ10: At about the same time we started this one. I started with 60 mg then bumped to 120. We noticed a good increase in awake/alertness and talking. We left her with a friend for a bit. Our friend had not yet heard her make any sound and was so excited to tell us when we got back that she had been awake and cooing most of the time. (of course I was sad I missed it!)

Fish Oil: This one I started about 9-10 months. We have always used the Nordic Naturals fish oil. I just trust the brand. We give her one capsule morning and one at night. Now I actually just use the Nordic Naturals Ultimate Omega + CoQ10 and cover both at one time.

Carnitine Fumarate: We started this about 9-10 months just after we got the fish oil rolling. We had to go up very slowly with this one as she struggled with a nasty redness/rash. She continued to become awake and gain skills so I couldn't swear that the carnitine was a part or therapy or other supplements or change in diet (we will get to diet soon). It just seemed that from what I read that the carnitine was a good idea and everything was continuing in the right direction. At this point (25 pounds) we use about 500mg/day but Dr. Miller suspects that is the one dose I am a bit low on.

B-12: Just after Ayden Jane turned 1 there was some talk about B-12 on the holistic pws list serve. I was comfortable with my doses of the others and, of course, wanted to give it a try. It was sort of new so I took the info to my pediatrician and asked if it would be safe. He agreed that B-12 is remarkably non toxic and did not see any way it could hurt her. He did have to add though, he did not see how it would help either. What does he know. Ayden Jane's response was REMARKABLE. Within 2 days she was so loud she was waking up her dad in the next room (he works nights). She also discovered climbing -- up the changing table, into the fire place... There is facinating reading on the Holistic list if you search the archives for B-12 or Ayden Jane. I started very low. 200mcg morning. Then I went to morning and night... Currently we use 750 mcg morning and noon and 1000mcg methylcobalamin at night as well as 750 mcg morning and 750 noon of cyanocobalamin. The 2 just seem to work differently with the cyano form being pure wild energy.

Creatine: At about 15 monts AJ was soooo skinny. The energy from the B-12 made gaining fat impossible, but she was not able to add muscle mass either. I hoped a bump in gh would solve the problem, but it was not enough. Creatine was added to help. It worked, just was tough to get enough fluid in her at the start. After a few weeks she seemed to just look healthier and was getting stronger. We currently give her 1 tsp/day divided into 3 doses.

That is a quick overview and I just do not really have energy to go back into more detail. I will try to do well going forward.

Janet