United Brachial Plexus Network, Inc.

Our son, Elliott, is 8 months old, sustained an ROBPI at birth, and had primary surgery on September 17, 2010. Surgery went well; the doctors were able to graft his c5 (which was avulsed) to his c6 (which was ruptured and repaired) and cleaned up scar tissue on the remaining nerves of his brachial plexus. He was in a cast for a month and we have continued weekly therapy sessions since his cast was removed.

At the past couple of sessions, Elliott has struggled mightily and has been almost inconsolable, calming only when he is in his mothers' arms. Today his PT suggested a couple different courses of action, including water therapy (which would limit stim work) having Mom not be in the room and finding a new therapist.

Our question is: Has anyone else reached a similar plateau and what did you do to fight through it? We have seen little progress since surgery (as expected) and, at times, question if we are going to PT too often. Any thoughts/ideas/suggestions as to what could help our little man?

First question:
How often is therapy?

Second question:
Are you using e-stim at every therapy appointment?

Now, after having done a ton of therapy in our 11 years of this injury, my opinion:
I think therapy is incredibly important. I also think that therapy comes in lots of different sizes and shapes. Just doing formal therapy with an OT or PT is not and does not constitute the only therapy. We had Juliana in the water at 6 months old and I still maintain that it is one of the BEST therapies you can do. We were lucky enough to have 3 years in a heated therapy pool (huge) at a school for the disabled. When she was 3 she aged out of that class and I put her into swim lessons at the JCC where she went to preschool. She first took private lessons and then joined the group.
We also spent a world of time at the playground. Climbing ladders, sliding on slides, playing in sand, balancing on a teeter-totter... all is therapy. We put cream on windows and mushed it around. We put stickers on walls and had her pick them off, we had lefty day (when everyone was a lefty!), we played with play-doh (okay, truth be known, her older siblings were in charge of the play-doh--the smell of the stuff actually makes me gag)...
I was lucky to have an incredible OT who taught me how to do what she did. She made EVERYTHING a game and fun for Juliana. With that said, maybe this therapist is NOT right for you or Elliot. Little kids should not know that they are working. There is always a way to make things fun. When the kids get older, there are still games, but you can be a little more straightforward about "we need to do this". However, after Juliana had surgery 18 months ago, we went to a therapy facility that was recommended by another bpi mom. Both Juliana and I disliked it. We were getting ready to move, so I didn't look elsewhere, but even she told me that they were boring. That she didn't like doing the same thing over and over... it wasn't helpful because she didn't put much into it. After we moved, we did things at home that were more beneficial (never forget what the OT teaches!).
Look for the interesting therapies as Elliot grows. We did horseback riding, she plays tennis and lacrosse. We did gymnastics. We did kickboxing, lots of people have their kids do karate.

And yes, it will take time to see the positive effects of primary surgery.

I'm not sure I helped you here, but I hope so.

One thing I do know, after 4 kids, is go with your gut.

good luck,
claudia

Claudia,
Thank you for your advice. Elliott sees a PT every week for one hour and has home ROM sessions at least 6 times a day with us. He doesn't seem all that uncomfortable when he is getting therapy from us or when he is rolling around and playing with his injured hand/arm. He has had stim treatment the past two sessions, at our insistence, to try to fire muscles and keep them from atrophy. The more we talked about it last night, we tried to determine if it was the therapy sessions that were bothering him or if it was the separation from Mom that gets him. The sessions usually start off well and nose dive after about 10-15 minutes, usually when he realizes that Mom is across the room and not holding him. Our PT has tried different things-bubbles, toys and socks namely, but after he crosses that threshold, there really is no turning back.
We like our therapist and feel that she has his best interest in mind, but again, at times we question how often she has seen this injury (rarely) and what impact that could potentially have on Elliott. It sounds like the adage "variety is the spice of life" fits future therapy to a "t". We try to take our family (we have another son who is 2 1/2) swimming once a week and complete ROM sessions in the pool.

On another note, we had some pumpkin pie last night and put Cool Whip on Big E's injured hand to see what would happen. He tried to bring his head to his hand at first, and then took his left hand and brought his right to his mouth! Thank God for sweets!

Thanks again for your help!

I love the whipped cream trick!

Just wanted to add more to Claudia's list -- the place where we got MOST of our therapy done was in the bathtub -- I'd get in with Maia and we had shower doors that I closed and man oh man -- we spent YEARS working in there....at least an hour each time -- and we started off with me putting hot/wet washcloths on her shoulders and then stretching up on the door -- and the toys, the shaving cream, my husband would climb up over the doors and shoot bubbles down on us, the color soap sticks, the dolphins that you bopped and they made music ---- I miss the most of all the childhood things gone by....

if your sweety starts cring and stiffens up during a session, then nothing good is coming of it.... do whatever you have to do to keep it positive and fun

-fran
(mom to maia - age 12 - and seems to be all grown up now)

I'm probably going to take a lot of flak for this, but I didn't do ROM 6 times a day with juliana. I did it maybe 3 times a day. Everything else was play.

As for the therapist, why doesn't your wife sit closer? I was either right nearby or out of the room. I didn't start being out of the room until Juliana was 2 and our PT had to change. We went to a facility that had a "no parents" policy. I didn't like it. I was used to being very close and learning from the OT and PT so I could copy it. I think at 8 months, Mom can and should be there. But she should be closer. I used to play the games too! I agree with Fran, if he has stiffened up and is crying, all is lost. Also, it might help to ask for a second therapy session during the week. The problem could also be a lack of familiarity with the therapist. Many bpi kids have issues with change, shyness....

You used whipped cream... we used chocolate chips, broken up chocolate bars and m&ms... Juliana was usually covered in chocolate by the end of therapy!!!

btw, use any means possible to get that hand to the mouth!!

Also, again I might take flak for this, but I would lay off the estim. You aren't going to have too much issue with atrophy at this point. Massage, constant play and encouragement to move the arm with keep the muscles going. Babies filled with growth hormone with works to their advantage at a time like this. Yes, the arm might be smaller, thinner... but that is a reality for obpi. How much smaller or thinner has to do with how much a child actually uses an arm/hand. So the whipped cream trick will do more for Elliot than estim. And, for many kids estim is painful. Some people feel it had everything to do with their child's recovery (I know a mom who feels this way). We used it, but only for short duration, always as a part of something else. When Juliana was a little older, we bought an estim machine and I used it at home with her. Ultimately, she found it painful and I don't think a painful therapy is worth it. (my opinion)

good luck and have fun!
claudia

Your child is primarily an 8-month old baby who needs his mommy and lots of love and security. He just happens to also have a birth injury. But him being a baby should come FIRST in everything, whenever possible. His therapist needs to figure out how to involve mom in the therapy (after all, you are supposed to be doing stuff at home, too... right?). She needs to work through the parents at this age. This is a precious age... a fragile age. Try not to lose sight of that! He's been through a lot in his short time here on earth and if he needs his mommy during therapy... he should darn well get her

Kate