update on my 5 y/o with rbpi

[Susie]

It has been a very long time since I have posted here. My rbpi son is now 5-1/2. He hasn't had any surgeries and recently has complained of discomfort when holding his arm straight up. He also has decided to not use it for writing anymore even though he is right handed. He says that when he shrugs his shoulders he doesn't feel the unaffected side but feels the affected side. We saw an ortho doc today for his leg and feet issues and he took a look at his bpi. His suggestion was to investigate possible muscle tendon transfer ideas to get him some external rotation since he has none. His bpi shoulder is sumwhat smaller and internally rotates which makes it hard for him to supinate and of course his scapula wings.

He is incredibly functional..he is quite good at compensating...arent' they all???

Anyway...I am writing to you all to see what you think of his issues. How much worse could it get with no external rotation? What are your thoughts on his explanation of feeling his bpi shoulder when he shrugs and not feeling the other side? And, the pain and discomfort he has in his elbow?

His ped thought that his bpi was shorter in the humerus in comparison to the other arm but the doc today measured it and said that it is the same size. The shoulder is just smaller.

I look forward to your replies.

[cassidysmom]

Hi susie

I'm sorry I don't have any info for you...my daughter is 17 months and underwent primary surgery in february.So I'm not where you are yet....but I just wanted to reply and wish you the best of luck in finding the right treatment for your little boy...

Dawn mommy to Cassidy 17 months
ROBPI

[Susie]

(((DAWN & Baby)))) Primary means that the nerves were evulsed? How are things going? See any movement yet? This injury can be so difficult on everyone in the family. Thanks for sharing! Susie

[cassidysmom]

hi Susie
Cassidy had an avulsion of the C7 and ruptures of the C5 and C6.....she's doing well, improving very slowly...you definetly learn patience while waiting for nerves to heal.....

Dawn mommy to Cassidy 17 months ROBPI

[mynani]

Hi there...like you, I have not posted in awhile...since last july right before my daughter had surgery. My daughter is almost 8 now. She also has a ROBPI. The external rotation was a big issue for her and she had a muscle tendon transfer last July with Dr. Waters at Boston Childrens Hospital. I cannot tell you what a world of difference it has made. She was having trouble doing certain things, like putting her hair up in a pony tail, and that really bothered her...she could not get her arm all of the way up or out to the side before the surgery, and now her arm goes right up, behind her head, out to the side..with no problem. Her residual issue is trouble supinating (that is a different surgery). Dr. Water's also did some "hallowing out" I believe they call it, of her shoulder joint to make it more stable. He had informed us that often children with these injuries have trouble with their shoulders as well...we had our one year follow up MRI, but are waiting to see the results. All that being said, I think the decision has to be how comfortable you are with your sons ROM...we wondered if we were doing the right thing up until the moment I carried her into the operating room (they let you do that there...they are amazing!!!) But even after 6 very long weeks with the huge spika cast, after all was said and done one day my daughter said to me "You know mom, I'm glad you and daddy made me do that...I can do so much more now" I cried...just to know that SHE actually felt a difference...I hope this helps you some...it is such a tough decision, but the best thing to do might be to talk to an expert and have them evaluate your son...I don't know where you live, but we cannot say enough good things about Dr. Waters and his team...he will tell you straight up what he thinks surgery will do for your son, and he is not one to "push" surgery if it is not a viable alternative...please feel free to email me at kpoje@hvc.rr.com if you would like to talk. Good luck!