Wednesday, March 6, 2013


I need to review supplements that we are using with Ayden Jane.  First up, thanks to some rigorous discussion on a pws page on facebook is B-12.  The first go around with using B-12 to supplement in PWS came along when Ayden Jane was just turning 1.  I researched what I could and even checked with her pediatrician for safety.  Basically, he said he was positive it could not hurt her but he did not really see how it could help.  All I needed to know was that it was safe so I tried it.

The response was nothing short of amazing.  The big kids wanted to get her a t-shirt that said B-12 baby.  That story is somewhat written up in old posts.  What applies now is that B-12 helped her energy, nervous system, response time, volume (if loud is helpful), sleep....  It requires both forms of B-12, methylcobalamin and cyanocobalamin.  It also requires support from the other b vitamins, although not is mega doses.

Over the past 4 1/2 years of giving Ayden Jane B-12 we have raised the dose quite high and I often wonder if we will one day need to go to B-12 injections.  It would totally be worth it to have a shot once a month or every few weeks because with B-12 Ayden Jane functions as a typical 5 year old.  With out it .... not so much.  Sleep is disrupted, she is slow and tired and frustrated and cannot concentrate.

Iron is the flip side of this.  I had sort of inadvertently backed of from the iron while I was trying to get Ayden Jane's gut working well.  Since iron can definitely slow down the process I had backed off.  Some other conversation on the PWS pages reminded me I needed to push it a bit more.  It also has similar effects of the B-12 and I know that the 2 work closely together so that is not odd.

Yesterday was an example of the super powers that the B-12/iron combo have for Ayden Jane.  She slept wonderfully the night before.  She woke up going 1000 mph.  She skipped back and forth, from room to room.  Paced gleefully as she talked....  Even her teacher commented when I picked her up how funny and full of energy she was.  She played all afternoon at home and then Daddy took her to horses.  He had her for a total of 3 hours including horses, dog washing (at AJ's insistence) and a quick shopping trip.  All Gary had to say was that it was only 3 hours and he was exhausted.  Ayden Jane went wide open until we finally got her to be still and quiet in bed for a few min.  (around 8:30).

I love it!  We have her IEP tomorrow and I can honestly say that days like today make me confident that the IEP really is just to have support in place in case she needs it.  But she likely won't!! :)

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