Saturday, March 29, 2014

The Prader-Willi Syndrome Monster

It is time for me to tell anyone reading this and curious, what actually happened a couple of weeks back...well at least one of the things. The other one I had hinted about a few blogs back but I've decided to drop that one out of my mind for now as it really makes me mad. (dealing with insensitivity)

Z~girl is in Girl Scouts and honestly, Cookie time is NOT a happy time in our house despite the yummy goodness of the cookie itself. It means A~man has cookies on his mind constantly as we try to get Z out to sell them to friends, neighbors and have her do an occasional cookie booth. Sometimes this isn't an easy task combined with the kids sports, music lessons and doing our daily schooling of basic things like alphabetical order worksheets and learning fractions. THEN the cookies have to come to our home so we can deliver them. This year Z~girl sold a LOT more than previous years and we tried our darndest to get them where they needed to go as fast as we could. In years past a box would "disappear" here and there. This year I was going to send some boxes to some friends of ours that live in a different state. I procrastinated but they were safely hidden in her room.

Finally I decided I had better mail them so I put five boxes in a bigger box to mail them and addressed the box. I planned on mailing them on Monday and had it ready to go on Friday safely in my room. (or so I thought) Well...we have been cleaning and decluttering our bedroom/closet which has been no simple feat. I distinctly remember my hubby saying on Sunday morning "here's an empty cookie box I can use." (the kind that hold numerous individual cookie boxes) My ears perked up as I knew the only box in there, should have cookies in it!

The box was empty which led to a search of A~man's room and the discovery of 5 empty cookie boxes. Yes 5! This was in addition to his regular daily meals and snacks. I felt like I had been punched in the gut for several days. Things like this just do not happen often in our house. THIS was one of the worst discoveries. He ate 5 boxes of cookies in....probably 24 hours....not sure if it was all at once. It does explain that the day before the discovery he was saying his back hurt and his head hurt. He hardly ever complains of pain which is common with PWS.

TMI but right before this discovery we realized he was constipated. This is also very common with PWS and it is something A~man struggles with always. He has to take Miralax twice a day with some Milk of Magnesia a couple times a week. So Monday resulted in a clean out which his GI doctor has us do with him periodically. All liquids plus juice popsicles, Miralax and Exlax. (FYI don't do this with your child unless it is advised by their doctor) Needless to say it all worked itself out and his tummy is fine. But that is a very real situation of PWS!!

Most of our son's struggles are more related to routines, asking a lot of repetitive questions, and obsessing over things. Yes he loves to eat but he is normally more concerned about WHEN he is going to eat. For me it was very easy to internally beat myself up that I allowed my son the opportunity to get that much food and eat it. His stomach could have burst, despite the fact he is average weight for his age. Seriously. I cannot describe the stress and guilt of that in sufficient words. But I am only a human...doing my best and have to keep on keeping on. I have learned I have to forgive myself and just learn from my mistakes...and understand that accidents happen. The stress I felt on top of the other situation was indescribable. 

We have an online friend Vanessa who is an adult with PWS and she often describes Prader-Willi Syndrome as her monster. Something that is trying to make her do what she knows she shouldn't and making her miserable at times. Being a parent to someone with PWS is a challenge, but I cannot imagine the physical and mental pain that this monster of sorts has on our sweet loved ones. Simply put, they can't just stop the urge to eat if given the opportunity. With that often comes grief from our son. I didn't notice it this time but in the past he has sobbed...apologizing. Thankfully he knows that he will not get fussed for it, (although I am sure I did a handful of times when he was little and I didn't get it) so he will tell us what he did when he is discovered. 

I think that I have mentioned that I finally got my hubby to start blogging. I've been nagging him for years as he LOVES to write and I think he is a very good writer. He recently did a blog entry on another aspect of the Prader-Willi Syndrome Monster....Impulse Control, so check him out too! 

1 comment:

  1. Very well done! I enjoy reading your posts about Prader Willi Syndrome and Homeschooling special needs as well as typical homeschooling. You are an awesome writer and mother. Keep it up!