United Brachial Plexus Network

My son, LOBPI, is seven years old and has not been in formal PT for about 1.5 years. I would like to restart therapy now, but with our current insurance, I would pay the entire cost out of pocket (until I reach a $4,500 max). Is it worth the money to have him checked out by a PT or BPI specialist again? Are there any new ideas in therapy or surgery in the last 1.5 years that would benefit him? He has already had 2 surgeries since birth - nerve graft at 5.5 months and muscle tranfer at age 2, both at Johns Hopkins.

Its always a good idea to have him see a bpi doc for a check up once a year while they are growing this way any problems can be found and corrected before they become permant like frankies elbow dislocation I stoped therapy at 7 and did it myself and his only bpi doc was for surgeries and were in texas so he just saw his PCP his elbow some where between 7 and 13 became dislocated due to his muscle imbalance it then formed a boney growth. The orth surgeons said it can't be fixed its been to long and wouldn't stay even with surgery so it can't ever be straightened the contracture has to remain because of the way the ulnar bone would position itself it they tryed. Shriners hospital see's Frankie 1x a year and its free they will also splint if they think one is needed.
Mare

they dismissed me when i was about 13 or 14, i cant quite remember but i think it was during my freshman year of high school. I havent seen anyone since... though i am going to visit a chiropracter on thurs... i need the cracking and the realignment so bad!
~Mel

We started therapy at 3 weeks. Stopped at 5 months. Started again at 16 months, stopped again at 2 yrs. The OT says that he's dev. where he should be. There may be a need to start again at some point when he gains more abilities dev. and can then work on new skills. Jacob mainly needs strength training on his arm as his ROM is fairly good. It's very difficult to work on strength at his age, so we'll wait and go back later if he still needs it. I think it's pretty normal to take breaks from therapy and then go back for a lot of these kids. I think I've heard other parents mention it. Whether or not to have him checked out by an OT/PT depends on his progress. Are you noticing any problems? I think a consult probably costs 200-300 dollars and may be worth it to see how he's doing. Plus they can give you exercises and activities at home to do that you may not know about.

We are 5 months post opp. He is 4 we have been in therapy since birth. we are down to 1 hour per week. We supplement with karate, and gym, plus lots of swimming. [ we live in florida so we can swim often] Swimming is awesome for the bpi. I truly believe karate is great too! Good luck!

I feel PT must become a way of life for bpi injured.
Lifetime sports such as swimming and stretching must be part of our daily lives. I am always in and out of formal therapy to keep me functioning at my best level. The sooner kids begin to incorporate certain activities as part of daily routines I guess the sooner they will need less formal therapy. I think most bpi need some evaluation from either ot/pt to make sure our compensatory movements are not causing any secondary injuries. It's important to keep on top of compensatory habits because bpi injured tend to find creative ways of doing things and they are not necessarily the best way for our spines and necks long term.

Kath robpi/adult

My 2 Cents:
As an LOBPI adult, I wish I had at least kept swimming. I 2nd everything Kath posted. The ways I compensated(found my own ways) was not the best way to do things from my spine's perspective...and I won't even start on the way I ruined my "good" arm, hand, leg and shoulder! I am paying a very high price now for the over-use of al of them. I now must find ways of "saving" my "good" arm, hand leg and shoulder...all of this is to say, the more "right ways" incorporated in children's everyday's activities at a young age, the less they will have to deal with secondary injuries as an adult.

HUGS all around,
Carolyn J
LOBPI/adult

Kathleen,
Wow!! Long time no see!!! I hope you are doing well. If I recall right we talked (on the phone) oh about 7 yrs ago when both our boys were babies! I lived in WA state at the time.

Ian is still in formal therapy. We had kind of slowed down but after our trip to camp this past September I decided that we needed to ramp it up again because I am concerned about him losing what he has.

Does your state have any programs that might could help you with getting free services? We have several. Maybe even the March of Dimes could help. Oh would you consider going to Philidelphia? The Shriner hospital there is really good with BPI and they are free! I am not a fan of Shriners but they do have one of the leading BPI docs on staff there.

I would say that if you can at least have your son seen by an orthopedic doc once a year and by therapy serivces to set up an at home plan that would better than nothing.

Many Blessings,
Kristie

PS I recall you went on to have at least one more child pretty quickely after your son right? Did you have any more? How is it all going?