United Brachial Plexus Network, Inc.

Just found out about this site when we took our son, Cody, to Shriners this week. Cody is six months old and has Erb's Palsy of the right arm, we are seeing some hand function and some elbow movement. Dr. Kozin has us at a wait and see to see if he will improve more at our next visit in October. Cody's elbow is getting tight and am looking for information on getting therapy for him because I feel that what I am doing may not be as helpful as a professional. We live in a rural area of New York. Does anyone have any suggestions on obtaining the help we need. We have contacted Early Intervention and have had two evaluators come and no help from them yet. Also any other information or suggestions would be wonderful as well. Thanks.

SORRY, THIS IS MEGBALCOM AGAIN, MEANT TO SAY THAT HIS SHOULDER WAS GETTING TIGHT, NOT ELBOW.

Here's the exercises I do with my son:
http://membrane.com/bpp/range.html
http://membrane.com/bpp/home.html
They seem very explicit but when I saw the therapist doing them I understood them better, so it's important to see a PT with experience in bpi, I think.

My son has the same - erb's palsy in right arm. We started with an occupational therapist w/ a referral from our pediatrician, at 5 weeks of age. I had talked to Texas Children's Hospital and they faxed me the range of motion exercises that we needed to be doing w/ my son everyday and the therapist twice a week. My son is now 27 months old, still in therapy (with ESD now), and has made great improvements. I think the most important thing is to have a doctor that is very experienced in BP injuries in charge of your baby's care. Even though, I'm in Oregon, I have kept in touch via phone and videos w/ TCH. And, actually, I have only talked to the nurse, Lisa, who is amazing and wonderful.

Hello Meg. My name is Tanya and I'm the mother of Amber who is ROBPI and 21 months old. We also live in a rural area of NY. We've gotten my daughter qualified for medicaide waiver (it's medicaide, but it's NOT based on income, but rather on disability/injury). We've been doing aquatic therapy paid for by the medicaide waiver at Sitrin Health Center (in Utica) and do OT and PT at home through Early Intervention. Feel free to email me as I can provide you with contact numbers and names for the medicaide waiver program. Where about in NY State do you live? We're near Utica, NY. We border 4 counties (Herkimer, Otsego, Madison, and Oneida Counties). My email is Nursemidwife86@cs.com. (By the way, no I'm not a nursemidwife, I just like the email name.)

Tanya in NY

Cinanina,

Good references, those are the same we got from our first doctor we saw.

I would only add that it is also VERY important to stabilize the shoulder blade while doing these movements. For many kids with these injuries, the shoulder blade muscles are also very weak, and so movements of the arm also tend to move the shoulder blade around a lot more than it is supposed to move. Otherwise, the arm and shoulder blade can end up moving "as a unit" and the muscles and soft tissue around the shoulder might not get stretched or ranged at all without stabilizing the shoulder blade. Doctors are starting to realize how detrimental this lack of motion between ball and joint is for shoulder development.

Try to cup the shoulder blade or resist its movement. For instance, for shoulder flexion, wrap your thumb around under the armpit (as shown in the picture) and resist the shoulder blade, which is likely to try to swing forward under the armpit; same for abduction. For shoulder adduction, try to hold the shoulder blade down against the back - it is probably going to want to "follow" the arm around as you bring the arm across the chest (which can overstretch those scapula stabilizing muscles and promote winging). Just watch to see where the shoulder blade tries to shift to during the movement, and resist it so that the ball of the humerus rotates in the socket of the shoulder blade as much as possible.

Kate

Thanks for your suggestions. I'll use them. You know, I printed these drawings (2 per page) in hard paper, filed them in plastic sleeves and in a "dossier". Most of the times I do the exercises (sometimes we do them by heart, when we're in a hurry) with the dossier near me, so I remember all the exercises and do them by order so I don't forget any.
My PT also liked the exercises and did some copies for herself to give to other parents. I find the drawings very clear.
When the baby was born I was told by everybody at the hospital, all the doctors, friends and at the internet that I should do PT but then the doctors ended up teling me he was very little and we should just play with him. So we only started PT after surgery when he was 4 months.
But since I was reading everywhere about PT and ROM exercises it took me an entire night at the internet and only the following day did I find what I was looking for - these wonderful drawings. So we've been using them since the baby's about 1 month. Some of them we couldn't do then because he was too small.
The PT really does the same exercises insisting on the movements of the junctions. The one thing I got very wrong was the time! It doesn't come on the drawings... I did these exercises for perhaps 1 second and repeated them about 10 times each :-/ PT really does just each one very slowly and insisting on the stretching. That's actually a lot different from what we were doing. But I think it was better then nothing. In fact, the PT gave us a lot of compliments when she first saw him at 4 months because he had no pain in any movements and was very well, acording to her. The biggest problem we had though was no one told us we should correct the hand position. My son had a tendency to the flexion of the hand like most bpi babies and we were never told to correct it. So by 4 months old it was pretty bad. We were told not to touch his arm a lot, I was even afraid to do the exercises... But he is now with a good hand posture, using both hands and doing OK.