When did you stop formal therapy?

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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KathleenZ
Posts: 4
Joined: Mon May 02, 2005 3:12 pm

When did you stop formal therapy?

Post by KathleenZ »

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.
Mare
Posts: 708
Joined: Mon Mar 10, 2003 5:30 pm

Re: When did you stop formal therapy?

Post by Mare »

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
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karategirl1kyu
Posts: 363
Joined: Mon Feb 19, 2007 12:59 am
Injury Description, Date, extent, surgical intervention etc: LOBPI, had surgery when I was 9- they moved muscles and tendons from one side of my arm to the other side. I can lift my arm to about my eye level, can't straigten it all the way and can't completely supinate my wrist.
Location: Richmond, RI

Re: When did you stop formal therapy?

Post by karategirl1kyu »

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
~Mel/23/LOBPI
Jake'smom
Posts: 229
Joined: Fri Mar 24, 2006 10:52 am

Re: When did you stop formal therapy?

Post by Jake'smom »

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.
mlynn
Posts: 298
Joined: Mon Jan 30, 2006 11:00 pm

Re: When did you stop formal therapy?

Post by mlynn »

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!
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: When did you stop formal therapy?

Post by Kath »

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
Kath robpi/adult

Kathleen Mallozzi
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: When did you stop formal therapy?

Post by Carolyn J »

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
Carolyn J
Adult LOBPI
Kristie
Posts: 424
Joined: Sat Nov 17, 2001 12:38 pm

Re: When did you stop formal therapy?

Post by Kristie »

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?
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