My story
Posted: Tue Dec 09, 2003 5:26 am
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
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