United Brachial Plexus Network, Inc.

Hello Everyone
I have been reading some posts and I feel I have found people who now understand!!!
I am Buffy, I live in the Yukon Territory in Canada and have 2 daughters. My oldest Daughter Jordanna who will be 4 in June has Brachial Plexus of the right arm due to a tramatic birth. We have come along way and there has been no surgeries to date. We do physio everyday and see an occupational and physiotherapist once a month and travel to Edmonton Alberta (about a 5 hour plane ride) every 18 months for check ups with her specialist and surgeon.
Unfortunately now she is not wanting to do her physio and fights us at every turn. We also noticed a huge loss in arm degrees..but not range or motion (thank goodness) she also complains of hurting/aching feeling and it breaks my heart. I guess that is still do to the guilt I feel of a bad birth...dealing with that daily I guess forever.
Wow...I went on and on here...just glad to have found a community who will get the frustrations, triumphs and obstacles.

Buffy

Welcome Buffy. I'm a new parent of a child with BPI and can't offer much advice on the how to make the PT more fun, but I know there are parents here who can! I'm sure they'll respond! Again-welcome.
Shari

Welcome, Buffy.

Do you stay at your daughter's physio apts? When my daughter was 2 she faught the therapy, as well. Her therapist asked me to leave during the sessions. It was still difficult for a few apts, but it got much better. My daughter, Emma, seemed to focus better on the tasks at hand without "mommy" there to act up for.
Just a thought.
Light massage and doing some therapy in a warm bath might help with her pain issues.
Does she do e-stim?

All the best to you!

Peggy

To make it less like formal physio, try enrolling her in swim class or a kindergym class... use play or games instead. Might make her feel like it's less like PT more like just play, but at the same time will help her/interest her.
As I understand it, you do PT at home, with no physiotherapist. So you follow their guidelines (when you see them once a month)? Then you may have a little more leaway as to what you do for physio. Ask your PT if she/he has any ideas.
I am sure others from this site can give you some ideas too.
When I was 3-4 I hated formal PT and so my parents were told to put me in swimming (with my mom or dad) and kindergym. It worked quite well, I even learned to swim by age 4! I loved the water (and still do). My parents would do a little "formal" PT with me and I was more willing to comply because I knew I was also going swimming or to kindergym class (all this was at our local YMCA).

Good Luck,
Marieke (age 30, LOBPI)
(I am Canadian too! I live in Montreal, Quebec)

Welcome! I'm not sure that what I'm about to suggest even works or if it is available in Canada but here it goes. Equine therapy aka Horseback riding. Here in Mass we have facilities that specifically use horses for therapy. My sons occupational therapist is also an equine therapist and she said she would like to start taking him to do this. She said it will help with ROM and balance. I guess I'm willing to try just about anything if it means no surgery and possible wellness!! Just a thought. Good Luck!

get to a pool, i live in florida & we SWIM as much as possible. it really helps the arm. my grandfather had polio and he swam everyday & he walked on cruches very well.

We use hippotherapy for our daughter who has cp and are going to be starting it with lizzie (robpi) The movements of the horse cause the children to have to compensate constantly. Think about when they are on the big ball, but in all directions; side to side and up and down and forwards and backwards all at the same time. They also have them up on their knees and reaching/pulling and turning while the horse is moving. It changes their balance and posture. There is also an inexplicable connection between the horse and child, my daughter laughed for the first time on the horse and then started trying to talk soon after. It is very safe, someone leads the horse and there are therapists on both sides. I can't recommend it enough!