All My Fault ...

So we left off with Ayden Jane beginning to put on weight and feel hungry.  I noticed the weight gain (although I can't say it's weight gain for sure because I don't own a scale...) in the way that she looked.  There was an increase in girth around the middle and into the hips and butt.  Her shoulders seemed to be decreasing and a pear shape look was emerging.  This is very similar to what I 'see' when she either needs a bump in gh or is sick and has inflammation creating a sort of insulin resistance and not allowing her body to use the gh well.

Now, Gary and I were talking just before Christmas about how great she was looking so it was a change in a relatively short period of time.  Along with her change in shape came the change in hunger and getting tired in the afternoon.

When I noticed the change I emailed Dr. Miller to see what she thought.  She wanted labs drawn right away and we did that Friday.

Okay, background set so here is where it is all my fault.  I have given Ayden Jane D-ribose for a while now.  Honestly, I don't even remember why is did so the very first time when she was tiny, but this past summer when I saw Dr. M and we were trying to figure out how to get AJ back to where she was (internally) before she got sick.  She suggested I try slipping it in again.  It gave me the desired support (not going into that right now) so I kept it all fall.  Over Christmas I ran out of the old and began new ribose.  I knew that the scoop in it was not the same as the other one and I just never took the time to work out the details of dosing.  Arrrggghhh.

So we are now five days ribose free and from day one the hunger/crash lessened.  She is already looking better and is now full of energy all day long with no afternoon crash.  No more, "Mom I'm starving!"  Yay!

For those interested as to what we are pretty sure was going on inside little miss keep reading.  If your eyes glaze over, sorry.  Somehow the ribose was causing an insulin resistance.  Insulin resistance lowers the bodies ability to use gh.  Most likely the labs we drew will show elevated IGF 1 because the same amount of gh was going in but her ability to use it was diminished.  So on the outside I was seeing what looked like a need for more gh. 

Good news is that because we monitor AJ very closely we are getting her back on her narrow path.

Labs

We have the results of Ayden Jane's most recent labs.  Things are still not right on the inside.  Her IGF-1 is just not coming down so we reduced her gh dose for now.  Other things indicate that the inflammation is taking it's good old time going away.  Other interesting thing is that her creatinine was low.  I stopped supplementing with creatine during the illness thinking that it would help with some of the fluid balance issues and because it can be tough on the kidneys...

Due to the recent accidental experiment with B-12 and the discovery that dosages definitely need to be readressed I am on a supplement mission.  With the help and guidance of Ayden Jane's endocrinologists I plan to revisit our supplements and maximize their use.  I have already increased the B-12 and started to add back in the creatine.

Next up comes D-Ribose.  Back when AJ was about 18 months and scrawny, even a bump in gh did not help her put on an ounce of muscle mass.  Not until I added the combo of creatine and ribose.  I thought I saw some good benefits from ribose, but it was challenging to manage the drops in blood sugar it can cause.  Ayden Jane's blood sugar was tough to keep up as it was...  She is much more stable in that category now so I am thinking it is time to give it a go again.  It has been ordered and is on it's way

Consensus so far?  Teachers report a great day at school.  Ayden Jane is LOUD and hilarious.  Only problem I had today was I had trouble understanding her a few times because she is talking so fast!  Food? No issues. Liquid?  Voluntarily drinking fluids... asked for and drained a full bottle of propel zero.

I'll keep you posted!

Ribose

I posted the following on the holistic pws site.

Hi all,

Quite a while back there was some talk about D-ribose and I believe the amazing William. Around that time I purchased some as I was ordering the other supplements. I ended up working on other things and was also trying to keep bouts of what seemed to be hypoglycemia type tendencies under control so I just put it in the cabinet. Well, I discovered it maybe a month ago.

I figured it was worth a shot with Ayden Jane because, if I remember right, it works somehow with or maybe it is needed more because of B-12 and she is a big responder to that. I did not really expect any grand improvements as Ayden Jane is really doing great so I was trying it more because I knew I bought it for a reason...

Here is what I think I see. Well, I definitely see it, I just don't know if it is from the ribose. Sort of the last significant 'oddities' about AJ have been how different she is out and about compared to home and some sensory seeking issues. At home, or even out and about but with her family members she is loud and animated and active. Outside of home or with non family members she is silent, hardly animated and active only in her own little games or running off to investigate. It is sort of like her brain is so busy taking stuff in and processing it when dealing with unfamiliar people, that she cannot possibly respond to them. (Not sure if that makes any sense to any of you)

After a bit less than a week, I started to notice that AJ actually spoke to some of my friends. They had never heard her talk before. She began to have personality no matter where we were and with people she had not met before. Most amazing to me of all is that at the playground this week, she truly played with another little girl about a year older. She has been at that playground many times and has never even acknowledged other kids accept to watch what they were doing. This time she followed the little girl as they repeatedly climbed up to slide and waited for each other at the bottom. Then AJ asked her to go swing with her! I had to translate, (after I snapped out of my state of shock) but off we went happily to the swings. It is hard to put into words other than to say that her little personality shines through now.

So, could it be the ribose? I know that she was quicker and more responsive after we started the B-12, so are they somehow working together with the other supplements? Or is this just the age these things happen?

Janet
Ayden Jane is 2 1/2

Great Day

Today was one of those days where Ayden Jane was just on. She was loud and funny and even talkative when out and about. She fought her nap with all she had, but finally caved. We went to horses tonight and she did not wear out in the least. After horses, we went to a soccer game and she just kept on going. She was jumping and dancing and running and yelling and just generally goofy. I will be interested in what Jen thinks tomorrow. If she is 'connecting her hips and shoulder girdle better through her abdomen.' I feel like everything is firing and doing so with much more ease.

Her monkey blanket came today and she loves it. I put her down to sleep tonight with the monkey on top of the weighted lap pad and she was very happy. She fell asleep in no time. I am meeting with a friend who is a seamstress on Thurs do see about putting it all together. I am thinking big score for Ayden Jane.

I added the ribose to Ayden Jane supplements a week or so ago. It is not one that would show big sudden differences so I was not expecting too much. The only thing to watch out for is a sort of blood sugar drop if the dose is too high. I have noticed that the past few days Ayden Jane gets cranky around lunch time, but it is more like a tired cranky. She does not ask for food and has even refused to eat anything a couple of times. Once coaxed into eating a bit something she loves, I can then get her to eat enough of a protein... and she becomes a whole new child. This is very similar to how she responded when she was smaller to feeding spread too far apart. I need to be sure to give her even a tiny snack before the crash in blood sugar (or whatever is crashing). I am not sure if the ribose is the reason for some of the extended energy she has had. I think time will tell, but she sure has had some great days lately. Well, besides the cranky, yelling, refusing to eat 20 min.