Enough is Enough!

Well, normally I only like to post positive things, but today I really have to vent...and hope anyone who reads this will put out good vibes to Max this his appointment this Weds goes well (November 28th, 2012). One of the many side effects for our kiddos that have Prader-Willi Syndrome is Scoliosis. Because of the severe low muscle tone, there is not a lot of support around the spine area. This combined with the fact that kids with Prader-Willi (PWS) need to take Growth Hormone to their muscle tone, metabolism and proper growth function, it gives them growth spurts and they can have severe cases of scoliosis at this early age so need to be watched. We just had our first screening and Max has been doing so well and watched and looks so good I really thought it would be our baseline and it would be just fine. I got the results a few days ago and it was a punch in the stomach. I heard Max's pediatrians voice and I knew there was a problem. He told me that the results show all kinds of curves, although it noted it was difficult to get good pictures. Obviously we are concerned, so now we are adding yet another doctor to Max's group and are off to see the Ortho to have him look at Max, the pictures and decide what to do. From all I have read and learned, once your curve hits above 25 degrees (Max shows 27 degrees) they may put him in body casting to wear almost 24 hours a day to help stop the curve! I honestly cannot wrap my head around the fact he may have to do this. I have met kids who have to wear them, and I know it's not uncommon for these kids to deal with this and it can get better, but every time  he gets tested for something new, he has it, I mean really!! So, I will keep everyone posted, but please put out good thoughts that it was a bad test or something and it won't be true.

To end on a slightly better note, he did recently have his sleep study (since the growth hormone can make their organs grow too big, like tonsils and adenoids) to be sure he isn't getting sleep apnea, which can be common, Max thank goodness does not have this at this point. The test is just awful, electrodes all over his head, face, neck, body, legs etc...and he handled it like a champion (for the most part) too. He always is a good sport :) - So, I lied, there is one test that came back negative and he doesn't have it!! Woo Hoo - LOL