SURVEY #1 (there may be more)

[Francine_Litz]

A warm compress goes a long way. It can warm the heart and not just the arm.

[Vanda Roseboom]

For the therapists to be knowledgable about the life long impact and how to help during all the different phases. To be watching for the things that can go wrong like dislocations and to be more knowledgable about treatments available worldwide and make parents aware that they have options even if not in their own community. To be aware of the surgeries that do exist and how to do therapy pre and post op specifically to the surgery that has been done. You may have had to travel long distances to get surgical treatment that is appropriate, and then you get home and no one has a clue what has been done or how to help the recovery. What to look for as complications to the rest of the body.

[Dean-na]

The problem that I had w/my therapist is when they asked me to do something & I told them I couldn't they need to listen. For example, like straighten my arm out...well I JUST CAN'T DO THAT. Everybody else that has posted seems to be on target.

[admin]

What I would tell a therapist treating a BPI child:
1. Get really educated about the injury itself - ON YOUR OWN - and all its offshoots. You're the therapist. So don't make me, the parent, have to constantly explain everything to you.
2. Get educated about the surgeries that these kids undergo. Know what they are, what they fix, why they're necessary. Go to symposiums and conferences and learn all you can.
3. Be focused and aggressive about therapy when you treat my child - not aggressive in manner (as in being rough), but aggressive in intent. That is, find out exactly which kinds of exercises are required, and then do them with a real focus toward a goal of improving my child's strength and range.
4. Ask for my input as we go along. Exchange what info you have with me, and I will with you. Let's work together to help my child.
5. If you don't love my child, pretend you do. Love covers a multitude of sins!

[rachelcasa]

My therapist was great in every aspect. He filmed my video, and also looked up websites such as this. One thing that I would say for a child with obpi, is that the therapist should have contact I think, one on one with the school. Especially the physical education teacher. My therapist had a good point. I was telling him how growing up they had those presidential (physical education) awards, well I could never do any of them. I couldn't hold myself up on a bar, nor do a pull up. My therapist made a good point and said "What did that do for your self-esteem?" EXACTLY! Absolutely nothing. These schools need to not get away with torturing children and making their self esteem lower.
(sorry had to get that out)
I'm 32 and have done maybe 3 push ups in my life. You wanna get a good laugh! *L*
Good Luck

[Francine_Litz]

bringing this post back to the top

[RyansMom]

Maybe I'm being a little naive, but how about the basics. What is a list of exercises (with video Preferably) that I can give to my OT after Primary. I want to make sure they are doing exactly what the staff at TCH recomends. Everyone says, "get a good therapist". But how do I know if she knows what she is doing, if I'm not aware of the exercises that should be performed/avoided. Maybe I'll get a good overview from TCH when I'm there on Jan. 26th, but if not, I would sure appreciate any feedback about how to make sure I'm getting a great OT for my son.
thanks!

[Susie]

Francine I think this is a great idea!!! There are so many things mentioned here that I would love our therapist to know!!! I wanted to add…

A therapist should know that there is very new information about this injury that is ready available making some of the older information not in the best interest of the child or baby. A therapist needs to update their information about this injury especially if they take in a bpi patient. And, instead of thinking the parent is nuts or reading crazy things on the internet, do the research of the child gets the best care.

[Susie]

A parent is (sometimes) relying on them (therapist) to know the correct treatments.

[B.V.]

Two PT's I went to when Amy was first born encouraged me to do ROM's at home. BUT THEY DIDN"T TELL ME HOW!! Actually, they told me but didn't show me. I didn't know one thing. I didn't even know what a ROM was! ha! I was scared to touch her arm, scared to do it wrong, scared about everything. I guess what my suggestion is is to explain things very basically and remember we, as parents, are just entering this "world"