United Brachial Plexus Network, Inc.

Good news to report Bailey is doing very well. He is using his bpi arm just as he uses his unaffected arm. He is now able to put his arm on the back of his head and we are still waiting on suppination, but all signs appear that he will be able to suppinate. He is pulling up and has just began crawling. We are thrilled with his progress, but I do have a few questions. His therapist has told us to stop the rom exercises because he no longer needs them. Is this typical? He is 8 months old. My second question, when do you stop therapy? We are using EI and they only want to come once a month, is this often enough? I have read from many people on this board that often when an injury appears to be transient that troubles occur later in life. We want to stay on top of this, but aren't sure how to do that. We will go back to TCH in April, but want to be sure we are doing all we need to at home. Thanks in advance.

Meredith

After my daughter had her original surgery I was also told to stop the ROM exercises. That is so great that the surgery was so successful for Bailey! What a gift. Other than that a lot of my experiences are very different because I am in Canada....good luck! I hope things keep going well for you!

Heather

This is great news!!

About the ROM - after Maia's surgeries we shifted from passive ROM (PROM - us doing it to her) to getting Maia involved in active ROM (AROM - maia moving her own arm in the ranges).

As long as your child cannot fully range - then I would think that you need to keep a watch and the therapy going. Now I understand that supination in a 'normal' child doesn't usually come in until 11 months or so, so I will keep you guys in my thoughts and hope that it does come in when it should or soon after. But 'supination' is also your ticket to Early Intervention should they want to cancel it - it does meet the standard 25% delay.

I would think that all kinds of activity that moves the shoulder and gets all the ranges would be what you would want to work at. Swimming being one of best ways to do therapy and have fun at the same time.

There is a list on here called "Stretching The Limits" that gives you a good number of ideas...Actually if you go to the awareness section at ubpn.org/awareness and then choose the Birth Injury Button, you will find a bunch of things in there that will be helpful...also the stuff at the bottom (all the recipes for things that could be good in therapy, etc.)

I'm so excited for you and hope that Bailey continues to progress and have a complete recovery!! It's thrilling every time someone comes on and talks about spontaneous recovery!

Keep up the great work Bailey!!!
-francine

Francine,
Would you keep up all the rom exercises or only suppination? He is very active and of course we spend a lot of time focusing on reaching in all directions with the injured arm. I am not so eager to stop exercises, but he is really beginning to resist them even in disguise.

As always you are a big help.

Meredith

well actually - you just reminded me that we do ROMs for supination....Maia at 3 1/2 still cannot supinate so we do the motions so that the muscles/tendons in her forearms don't get too tight. And when I get a chance and can sneak it in I'll do some roms to assess for tightness elsewhere.

I would make this part of your IFSP or IEP...your EI plan... that Bailey be assessed for contractures. That way - they can be the baddy and not you....and sometimes kids accept from other easier (and sometimes not)

When we do other activities during the day I actually keep a mental count of her individual ranges.... I know that may sound silly but whatever she doesn't accomplish during the day (that I see at least) we do in the bathtub at night with active range of motion.
(gosh there's SO MUCH you can do in a bathtub!)

When Maia was Bailey's age I would choreograph ROM's to the CD of the week. It was fun - we used props. We made a music video even once or tried to, I should say. When she got older we used the Wiggles video tapes to get her moving and she still loves them and dances to Barney, too.

The idea of getting the shoulder motions in, is making sure that Bailey has created a normal shoulder joint. This is done only by doing those movements.

Keep on getting that sweet little arm moving.... I think you'll know when it's time to stop - you won't even have to question it, it'll come naturally.

-francine

Wow! What great news! It sounds like Bailey is recovering wonderfully! Where we live, a diagnosis, or lack of a particular movement, such as supination, is not reason enough to qualify for EI services -- there has to be a developmental delay of a certain amount in 1 or 2 areas. So, based on what you're saying, I think it's great that they don't want to discontinue svcs. Of course, EI qualifications and services vary greatly from state to state. Without seeing him, but based on your comments, I would think once a month would be good b/c that way not too much time would lapse to monitor him. You could always do hospital therapy 1-2 x/month if you feel more comfortable with a bit more frequency. How does TCH feel about the proposed therapy schedule?

I would be hesitant to stop ROMs. Although Nicole's AROM increased a lot after her Mod Quad, it's not complete, so we still do the PROM. I guess I would still do the supination exercises a few times / day and perhaps gradually decrease the rest of the ROMs. Then, as you decrease you can monitor how he's doing with the reduced exercises. Just be sure to watch closely if he's really getting in the full range I suppose. I'm sure eventually you'll find how often you should check his ranges and how often you want a therapist to check his ranges. Congratulations on such great progress!