This may sound kind of silly...I figured this was the best place to ask aobut this though.I could have added this under the "does and don'ts" thread but I was afraid it would get "lost". I'm sure you all know how hard ti is to decide what's something to worry about and what's just my own overprotective nature.There just arent's any specifics about the "little things".The other day I was in observing OT and the OT had Kahtleen leaning over a ball(her belly was on the ball and her hands on the floor her feet barely touched teh floor behind her KWIM) to help bear weight on her left arm.It concerned me because her head at times was almost upsidedown.She has difficulties with her neck control(still very weak) so she can't hold it up too well in this postion, normally this would seem OK becasue it would also help her with the neck control too.BUT It just didn't seem like a good position to be in for someone with htis disease....But maybe I'm being too picky and this really can't do any harm..I thought it would be good to get anyones ideas on this and what you thought.I don't want to worry about every little thing BUT I also don't want to miss something either....
Mary Grace

Hi Mary Grace....
...I am the same way with Cara...when her brothers grab her by her ankles and lift her upside down...or when she watches cartoons/TV with her head hanging off the side of the sofa...fearing allows too much blood flow to the head and putting too much strain on those new forming arteries that are still tiny & growing.  And especially on the playground when she swings her legs up on the bar and let her body fall as she hangs by her legs upside.  I wondered the same thing...should that be avoid ??  So am curious what other parents say, too.  ;)  CarasMOM

Hi ,
 Marks 22 I can assure you Lisa and I will be overprotective too.  There will not be a thing he does that won't be critisized and he knows it already.  If your, then something will happen.  I would have to say you have to let common sense prevail here.  Call your Dr. if your not sure though.
                          ron

Hello all:

I haven't written in a while. But, I have been living with MM for 15 years and I have never had an issue with hanging upside down.. .But, I am no dr.

I have always lived by the rule of "seeing how it makes me feel". If I did something, and it made me feel bad, I didn't do it again. It probably seemto simple... But, it has worked for me so far!!

Good luck!

Sara

I have to agree with Sara. Tyler is also in OT and hangs upside down over the ball, he has always had trouble with muscle control for his neck and stomach so this has been going on most of his life. He has never complained about it making him feel weird before or after diagnosis. Also, even children that can't comunicate well, will make sure you know if something "hurts" when they do it. So just trust that Kathleen and Cara wouldn't keep doing it if it hurt or made them feel weird in a bad way.

Good question and it helped me to know I wasn't the only "worry-wart" of a mother  ;;D. It is so hard being a parent of a younger child going through this, let alone a special needs child going through it all. I'm glad this site is here to help share information on things like this.

Rena

Mary Grace,

Trey does the same thing sometimes when he has OT/PT.  He seems to have control over everything.  He doesn't seem to be bothered by doing it though.  That is a good question, I had not thought of that one yet.  I will add this one to the list of questions I have for his doctor.  Thanks.

Michell

This is so funny that you brought this up.  I was in the hospital recovering from my stroke and was just diagnosed with MM when my stroke/neurologist came into my room while I was blow drying my hair.  I had my head down and my hair flipped over  drying underneath and he very quickly told me to find a new way to dry my hair.  I didn't know what he was talking about at first.   But he said that the constricted vessels in the brain are working overtime with my head flipped over like that and the blood is working extra hard to pump through those arteries with them being constricted.  So, needless to say, I have found a new way to dry my hair!!!!  Now of course like I said, I had just had a stroke, just had an angiogram, all sorts of tests and just diagnosed with MM, but I don't think that he only meant not to dry my hair like that during my hospital stay.  I think he meant forever.  Just giving you all my story for what it is worth.  I am 40 years old if that makes a difference compared to the little ones!!! But just spreading my word of caution in the wind from my doctor first hand!!  Laura from Louisiana :o

Wow Thanks for all your input! I do feel better that I'm not just obsessive.  Kathleen DOES complain about being in thsi position but it could also be because it's difficult for her .
 Laura my thinking is exactly what the Dr. had explained to you. That it could stress those tiny vessels. She expects Kathleen to keep this position for roughly 20 minutes, she can only hold her ehad up for seconds at a time.
Mary Grace