United Brachial Plexus Network, Inc.

Today we saw Dr. Waters He told us Kailtyn has no restrictions- she can hang from bars, swing from arms, do gymnastics, hold other kids hands in dance etc. My husband was thrilled I was nervous. I have spent 2.4 years hovering over her arm- don't pull, don't lift etc. he said she could still get back the few movements she is missing- like the winging and putting elbow down and thought she looked awesome. He is still watching her via yearly MRI and 6 month visits but took away restrictions said she can do anything other kids do. he said these will not dislocate her. Has anyone else been told this for a mild BPI? I know she has a lifelong injury and needs to be monitored and I plan to procede slowly allowing some activites and watching I have not been able to stop her from hanging all the time anyway. I was just wondering others experience with this.

It is nice to meet someone who describes a mild BPI!! Our daughter, Colleen, is 16 months and also has a mild left BPI injury from birth. Your news is very encouraging! Colleen's issues are very subtle(you might never know she was injured if you saw her), yet still she gets PT and OT to encourage her to use the muscles that remain affected most. I'm sure you watch your daugther like a hawk and always will. No matter how mild, the injury will be something she will deal with her entire life, and you may need to be extra vigilant for those times when she may feel tightness. I know in our daugther's case, every growth spurt has brought about a setback in her progress. Then the spurt is over and she seems to get back on track. We've been told that athletics will be an issue for her in life, but that even with the compensation of other muscles or her other arm doing the things she can't do with her injured one, that she will hopefully be able to do most things other children can do. We've been told that several activities are great for BPI kids - karate for the excercise, arm movements and strength and self-discipline;gymnastics for strength and mobility;ballet/dance for self-discipline and also for working in front of a mirror and trying to use both arms equally;and swimming - the best excercise of all! I'm looking forward to Colleen being old enough to do these! I'd love to hear how you and Kaitlyn are doing!

Hi! Sounds like you had a great appt with Dr Waters!:) I just wanted to share some info about Brittney if that will help. Brittney has a mild/mod injury and has around 75% usage of her left arm. She has never had any surgeries. She continued to gain movement past her 3rd birthday. Her muscles kept getting stronger and I think that her muscle strength along with her coordination and determination to do things herself helped her gain movement too. She is now 10. We had never been told to stop her from anything that she wanted to do because of her arm - and we even encouraged the monkey bars and things like that to build her arm strength. She has always done and tried everything that she wanted to do. We never worried when people picked her up as a baby - - We always picked her up under both arms just like any other little one. None of her doctors or therapists ever told us about any sort of restrictions. Brittney has always loved the monkey bars and climbing. It was her goal to make it all of the way across the school monkey bars and in 2nd grade she finally did it and her friends all cheered for her. I can't remember ever telling her to stop doing anything just because it might hurt her arm. Tag team wrestling - her and her sister against Dad - (I cringe but never stop them) Brittney was in dance when she was 3 and 4, in t-ball, swim lessons, cheerleading, and as she got older she does more and more. She loves to play her recorder and wants to play the drums..... I will never tell her she "can't" just because of her arm - she will find her own limitations just like we all do. Now she loves swimming and soccer. If Dr Waters has said "no restrictions" then - - set her free and have fun!

I remember a year or so ago when I first found this board and so many parents were so worried about their kids and hurting their arms and all about the things they wouldn't let their kids do. I remember how it scared me that maybe we shouldn't have been encouraging Brittney to do things like the monkey bars or hang - - then it hit me - Brittney did all of these things and she is just fine. Her arms are both muscular. There is a little difference in length but not in muscle tone. I hope this helps. Christy

Our specialist also said that Lauren is not at risk of dislocating and that she is fine to hang full weight on her arm. Actually, he encouraged playground play. Jess

Unfortunately, I don't have personal experience or insight to share, but I just wanted to say CONGRATULATIONS on your great news!!! Keep up the good work! Enjoy the summer! -Tina )

Thanks I guess I should celebrate! it is nice to know others have had the same experience. I would be happy to share any info on having a child with a milder injury with anyone.

Carole,
I am thrilled for your news. My son as well has no restrictions and you wouldn't know he had a problem without his shirt off or you knew. It is a great feeling to not have restrictions. I was really nervous for a while because he could not move his arm until after his emg at 3 months and we were never told there was a special way to pick him up, not using arm for injections, B/P's, etc. I was scared when there was discussion about dislocations, but he hangs from his arm and being a nurse I am aware that if he had issues currently, he would not be able to do what he does and be as active as he is with his arm without pain, or discomfort. I am so happy for you.