My story

[monica]

Hi,

I surfed webpage after webpage on bpi when my son was 5 days old. He was 11 lbs. 1 ounce and delivered with a bpi to his right arm, specifically Erb's Palsy.

At that time, my husband and I were really devastated by the difficult delivery and I was seeking advice on message boards. I read so many stories in those weeks and I looked at so many pictures.

The amount of information on the boards and the support available was astounding. Much of the vocabulary and therapeutic aids discussed at that time were very foreign to me. I remember pouring through the stories wondering how my own might turn out, and if I would be using electricity, casts, and taping to help my child recover his function in his arm. And if he would ever have a functional right arm.

I especially remember paying attention to the stories of success and recovery. I wanted to know every detail. I had a drive to constantly compare my child's symptoms to other's , which resulted in frustration, since as you know, there is really no immediate way to know how severe the injury. In the beginning, you have SO many questions, and many are unanswerable. It is extremely frustrating, and depressing.

Well, now 18 months later and nothing short of a miracle, I have a success story to share! Since I know how much information I was looking for when I found out my child had a bpi, I wish to share my story now. I want to be sure to make any information that I might have available for other people to read. And especially for the parents who are new to the idea of having a bpi baby, and might be as scared and desparate for reassurance and advice, as my husband and I were.

I will also be more than happy to answer specific questions concerning my child's erb's palsy, or treatments.

For starters, he was born with a right arm that was flacid and was hanging totally limp. He usually had a little fist that was turned outwards (pronating), and he did have some finger movement. It was hard to imagine that he would ever be able to move the arm at ALL. We spent time just praying that he could someday be able to just lift his arm by himself, and we would be so happy, nevermind function or quality of movement.

We started PT at 10 days of age, he came home from the hospital at 7 days because he had bruising from the delivery. This required phototherapy, and a longer hospital stay for him.

We started PT twice a week when he was 10 days old and scheduled monthly visits to a bpi specialty clinic nearby, where he also was evaluated by an OT. We have not stopped this program for 18 months now.

We waited two full months before noticing ANY movement in his arm at all. Finally, it started with a teeny little lift of the hand and wrist. It was very slight movement, but it gave us a glimmer of hope. We always worked very hard EVERY day on the exercises that our two PTs gave us for our home program. It wasn't until about 4 months that he was able to move his arm halfway across his body, but not anywhere above his mid-section.

Now, 18 months later, our boy has made a complete recovery. He has all function of his arm, there really isn't any motion that he can not perform with his right bpi arm. He blows his nose, pulls a hat on, feeds himself and waves bye-bye. We are so thrilled, and blessed.

We still continue PT twice a week, but next week we are going to start having OT once a week, and PT once a week. We are now fine-tuning his skills. I love that phrase "fine-tuning!" We are working towards better supination. We also want to lessen the elbow contracture. (In April it was at 20 degrees. Now it is down to 4 degrees.) We also are trying to always make the scapula more stable. It is getting there too.

When you look at our son, shirt on or off, from the front you can not see the difference in the two arms. In fact, one of the PTs (not his usual) started working on the WRONG arm!!! That was a wonderful day : ) From the back though, you can still see some winging in the scapula on the right side. That is how you know he has a bpi. I think a trained eye might also pick up on the slight contracture too. The biggest success we felt was getting him to carry his arm down by his side, and to raise his arm straight up (versus leading with the elbow.) These were difficult movement patterns for him to learn.

We had some other difficulties as well along the way to recovery that you might like to know about. We had an issue where he started walking up on his toes when he was learning to walk. It appeared to be a balance issue concerning his arm. Another bpi child who was older did the same thing and needed to wear special shoes. We worked on it, and thankfully seem to have him past the tip toe stage. Have any of you had issues with this as well?

We also had to work hard to get him out of certain "incorrect" patterns of movement. These patterns were easy for him to fall into as his arm recovered movement. We have worried about the contracture, and it seems to slide backwards sometimes with growth. Do these issues sound familiar to you too?

However, overall the hard work has paid off, and he is doing so well. I have to think that the primary reason he has done so well was definately the early intervention, along with frequent therapy visits. Furthermore, our therapists used kineso tape, splints, and e-stim. They have been excellent in their knowledge and creativity. I think that is key.

So, I hope that others can find some of this information beneficial and encouraging.

Monica

[admin]

My son Zak, who is 91/2 months at the same weight has the right arm njury also. (C5,C6 and partial C7)He also has a problem with standing. He stands on his tippy toes(right). This gives me hope. He had his first surgery to take off a mass of scar tissue off his nerves. No improovement yey but we are hopeful. Were you injured also?

[JaimeC]

Monica - Fantastic story! Thank you so much for putting it all down in words - from beginning to now. I think it's great to see a success story. I take it your son never had surgery? That's a pretty impressive recovery. I'm so glad for you. Sounds like you're very on top of things and tuned in to your child. Keep up the fantastic work.........I know it'll be a comfort to those just arriving. I remember those first months after my son's birth. Rough!! It's funny you mention there was so much information out there, and so many different stories. I can certainly see where that would be almost as difficult as having no information.
Good luck to you!
Jaime
mom to Tyler - 8 - lobpi

[JaimeC]

Monica - I forgot one thing: The flip side to your story is my son's. Eight years ago when my son was born, there was no information available, and where we live, everyone poo-pooed primary surgery. I had NO knowledge of primary surgery or what it could accomplish. Consequently, my son did NOT have this surgery. His injury was similar to your sons - no movmement at all until about 2 months, when he started to move his shoulder, at 4 months, he started to move his wrist slightly, at 6 months, he started the tiniest movement of his fingers. He started therapy at 4 days of age. And has been in therapy since that day. He finished formal therapy this past August, not because he's recovered, but with school, formal therapy is more difficult, and he'd hit a plateau now that he's 1 year out from his third surgery. My son has significant deficits, particularly in his forearm and hand.
So, as you mentioned, you can't tell how a child will recover at first. It's hard to tell if decisions/actions are the right ones. I know if my son had had primary surgery, he would have had better use of his hand. So while our boys appeared to have similar injuries (based on what you said his symptoms were), and neither had primary surgery, they had significantly different recovery.
I certainly do not intend for this to be a negative to your story. I only want to illustrate to other new parents the value of at least exploring the idea of primary surgery. It's so hard to know what to do, but I think knowledge is everyone's best friend here.
Thanks for listening to my story.
Jaime

[tcon]

Great story. It is nice to hear about the success stories!! Can you share how you taught your son to lift his arm without the elbow? That, and suppination (she can get alittle past neutral), are the last things we are working on with our 14mo daughter. I believe (and this maybe be naive of me) that lifting the elbow is now a learned pattern with her.

[JaimeC]

Tcon - I agree. I think lifting with the elbow leading starts out as a nerve/muscle issue and becomes a habit. I'm stumped as to how to get rid of it too. Have you looked at www.tascnetwork.net? It has lots of good information on brain wiring and patterns in neurologic injury. It's founded by Karen Pape, who was the developer of the TES e-stim therapy.
Jaime

[admin]

Jaime or others,

Does TES help with the elbow down?

Monica,

Amazing story. What a miracle for you and your family. Thank you very much for sharing. Being bluntly honest, I am sure some read this and just assume your child's injury was less severe, which perhaps it was. However, I have come to believe that many therapeutic interventions and treatment modalities do make a difference, and for us to make such an assumption could be a big mistake on our part. Please share all that you can, so that others may learn from your experience and blessings.

Thanks!

[JaimeC]

I'm not sure if TES would specifically help with the elbow issue. I know it's purpose is to build muscle and increase circulation. Theoretically building muscle (particularly the corresponding muscles) should help with getting the elbow down. But I think it's much more than just the muscle. As mentioned it's a brain thing, and a habit thing too. The brain becomes wired to do something a specific way if that's the way it's always been done. Then it's almost as if the brain can't accept another way of doing it. However, research has shown that much repetition of a movement (i.e. - the correct movement) could help to re-wire the brain to accept it. They've shown it with people who've had strokes. Of course I realize strokes and bpi's are different, but maybe there's hope for our kids too. I still can't figure out a way to re-wire my son's brain though. I think a combination of therapy, splinting, TES, e-stim, surgery and such will help to improve movement, and eventually help to re-wire that brain. Does this make any sense?
One last note, my son has had therapy, he has had e-stim, TES, splinting, casting, taping and surgery for 8 solid years. However, the nerves are just plain damaged and can only do so much. He still has significant deficits and essentially functions as a one-handed person. I would never assume one way or the other is THE answer. There are too many factor's to make a blanket statement like that.
I'm not a proponent one way or another. Each of us does what we think is right for our children.
Blessings!
Jaime

[Francine_Litz]

TES is used for "muscle atrophy due to disuse"

In essence it feeds the atrophied muscles so that they can regrow. You do it on innervated muscles.

Once there is more muscle tissue then you can do NMES which is the next step - strengthening the muscles.

[LisaL]

As far as the elbow sticking out. I can tell you about our issues. Hannah had primary at 6.5 months and the MQ at 11.5 months. Before both surgeries she could get her hand to her mouth by sticking the elbow out. A year post primary she started to regain her bicep muscle and then she did start to do things with her elbow done. I think it is a learned behavior. She is 2 years old now, and has a fully functional bicep and arm. She does do things with the elbow out but as the days pass it is becoming less and less. I think it is a learned behavior and also a strenth issue. I have been told that peer pressure is a great thing and when they see other children don't hold there elbows out and if they can get hand to mouth without holding the elbow they will be more likeyly to try the way other children are doing it. Just my two cents. Just gently push the elbow down from behind if it is sticking out.

Lisa