Tuesday we were up at Doernbecker's Children's hospital. This time not really for Michael but for Steven my youngest son 15. Steven has been dislocating his knees this last year fairly frequently. His PCP referred him to make sure was not a serious connective tissue genetic issue. All of his pre tests he passed so we knew pretty much that we were not faced with Marfan's Syndrome, though needed to confirmation.
Michael's Physical Therapist, who was the first one to say "Have Michael tested for Myotonic Dystrophy." when everyone else was scratching their heads, said that she didn't think Steven had Marfan's but Ehlers-Danlos Syndrome mild form. I think we will just go to her for now on if we suspect a genetic issue. Yes, that is what Steven has. It is also what most members of cirque du soleil have. It is not uncommon and usually just ignored as double jointed and flexible. Steven has always been able to do things with his body that the rest of us would have to break our bones for. He does dislocate his knees doing NOTHING, which in part is due to fast growth rate right now with age, treatment is a lot of PT to build up quads to keep knee in place, and no running. His doctor was surprised he was able to do the Back backing trip we did last year at Philmont Scout Ranch considering the weight baring. Steven did complain of hip pain but muscled through it.
When we were at hospital, Michael was a riot. He just did not want to sit still. Since it is a 3 hour drive to hospital from our house, he was glad to be out of car seat. The Genetics Councilor was amazed in the changes in Michael from our last visit to that day. He was mobile and crawling all over. He wanted attention from everyone, where as before he just stared.. He had to be very vocal while we were talking with Doctor. Steven finally picked him up and bounced him on his knees while he was talking to the doctor. They were all trying to talk over Michael's giggles. They asked if Shriner's had called us yet, and No they have not. It is a whole new change of doctors for Micheal. Not sure how I feel about all that yet. They said I can keep the same ortho team if I did not feel comfortable with the new ortho team. I will meet as easier to do everyone in one place but I so love his current team.
Michael's Physical Therapist, who was the first one to say "Have Michael tested for Myotonic Dystrophy." when everyone else was scratching their heads, said that she didn't think Steven had Marfan's but Ehlers-Danlos Syndrome mild form. I think we will just go to her for now on if we suspect a genetic issue. Yes, that is what Steven has. It is also what most members of cirque du soleil have. It is not uncommon and usually just ignored as double jointed and flexible. Steven has always been able to do things with his body that the rest of us would have to break our bones for. He does dislocate his knees doing NOTHING, which in part is due to fast growth rate right now with age, treatment is a lot of PT to build up quads to keep knee in place, and no running. His doctor was surprised he was able to do the Back backing trip we did last year at Philmont Scout Ranch considering the weight baring. Steven did complain of hip pain but muscled through it.
When we were at hospital, Michael was a riot. He just did not want to sit still. Since it is a 3 hour drive to hospital from our house, he was glad to be out of car seat. The Genetics Councilor was amazed in the changes in Michael from our last visit to that day. He was mobile and crawling all over. He wanted attention from everyone, where as before he just stared.. He had to be very vocal while we were talking with Doctor. Steven finally picked him up and bounced him on his knees while he was talking to the doctor. They were all trying to talk over Michael's giggles. They asked if Shriner's had called us yet, and No they have not. It is a whole new change of doctors for Micheal. Not sure how I feel about all that yet. They said I can keep the same ortho team if I did not feel comfortable with the new ortho team. I will meet as easier to do everyone in one place but I so love his current team.
I am going to add to this that Michael was vocal. Something he NEVER is when Speech Therapy is working with him. He has 2 different speech therapists and he refuses to make sounds for either one.
ReplyDeletenever heard of this - but I have multiple problems due to hyper-flexibility. hummm reading and checking it out. Luckily it would be mild as I have never had the bleeding issues.
ReplyDeleteSounds like in spite of all the stress of the visits - it was fun.