Saturday, September 22, 2012


Ayden Jane was screened for scoliosis at age 3.  All looked great.  We did not x-ray her at age 4 and I would guess that she was still okay.  Last winter took such a toll on her and she seems left unable to use gh as effectively (as determined by the need to lower her gh dose by 0.2 to keep IGF-1 levels in check).  Her tone is not as good as it once was.  Not saying it is bad for PWS, but it is not great.  We saw a big change in her posture by late summer.  Although her Endo, Ped. and PT could not see any outward sign of a curve when they checked her back, I just wanted an x-ray anyway.  Turns out that 'something is just off' Momma intuition was right.  Sometimes I really wish I was wrong.

Ayden Jane has a 23 degree curve according to the x-rays at our local hospital.  Now, I will add that she was less than cooperative as it took a while and she just does not stand still very well.  I have no idea how much those things play into the results.

So, what do I do next is the question.  I contacted Dr. van Bosse in Philadelphia as I just do not have the time or energy to try to find someone here with the expertise or open mind that I need.  He is treating a lot of patients with PWS so I just want to go where I know she will get great PWS/scoliosis care.  He is taking her on, but I haven't heard yet from the folks that start the ball rolling so to speak so I don't know how long it will be until I get her there or what hoops I have to jump through.

He did say that a 23 degree curve is in the 'observation' phase.  If it were to increase a few degrees it would be considered to require intervention.  Since I feel like 2-3 degrees has got to be within the margin of error I really want to get up there!

Okay, so that was the nuts and bolts.  How am I taking it?  Not great.  I think about where she was 1 year ago and how she is doing today and I just feel like I am losing the battle.  Her tone is less, she has added weight, she is sick again (UGGG), she has and obviously needs glasses, we have had a few behavior issues (likely related to being sick though), we had to reduce gh because her body just does not metabolize it as well as it did.... I think we need to begin to cut back on food because with the reduced gh she just does not burn as many calories.  So frustrating.  Just wish I could figure out how to get her back to where she was.


  1. It sounds that you have a lot of your plate.

    I wish you luck.

    Do you see a RD for AJ's diet ? He/she can help you figure out a meal plan for AJ which also pleases all the family.

    Take care

  2. PWS kicks butt and takes names. Sorry things have been on the decline lately. :( It's so frustrating. For what it's worth, I still think you are doing a great job, but I know it's hard to watch your kid deal with stuff and have limited control over it. Keep us posted on what Dr. VB says.

  3. Great explanation i like your style for scoliosis latihan visit.