United Brachial Plexus Network, Inc.

Hi! I just found this website after my son's physical therapist has encouraged me to seek other parents in this situation. In a few moments, i have seen such warmth and compassion, and a family of people looking to connect. My son is now 10 months old with Erb's Palsy, or BPI. He is seen weekly by an OT and PT and under the care of Dr. Kozin at Shriners in Philadelphia. Some days i find myself in denial of his injury and imagine it will simply disappear, as our loved ones often seem to say. His doctors and other's in the medical field, tell me that this is now impossible. I am eager to speak with other parents to see what this all actually means... i am scared for my son and feel terrible at what his challenges may be when he matures. What difficulties will he actually have? He has motion and the ability to do a lot, as well as the most beautiful spirit~ he never gives up!!! I find myself researching the same stuff over and over and would love the opportunity to "speak" to people who have found themselves in similar situations and how they worked through them. I want to be strong for my son, and give him everything~ including the confidence to overcome this challenge.

I know there was someone on this board who said that as a parent, you will be more scared than your son will be!

I can't give you the parents' view, so here is the patients' view:

I had BPI from birth, and just found my own way to do everything. As Ken Levine pointed out last weekend in Appleton, this is actually our special advantage. (But I'm glad nobody told me that earlier. I would not have seen it that way when I was struggling.)

Right now, you will make a difference by sticking to therapy instructions, and pursuing every option...

Consider the value of giving your son many other advantages: for example, what if he happened to learn to read ahead of his peers? It's having accomplishments that gives confidence.

Some of the things I learned in OT at an early age, are skills I still practice.
Swimming, metalworking, painting, Lego building, the ability to make anything out of thermoplastic and velcro (ok that's an odd one.) I find it strange that my peers didn't learn so many things.

I don't feel like going into all the difficulties and challenges that exist. The worst are mental. The reality of social rejection only varies in degree, whether you are different physically or in some other way, or just plain awkward.


I am running scared every day of my life, but my wife tells me I am the most confident person she knows.

WELCOME Kimberly to our UBPN Family! Yes, we ARE a Community of Caring, Supportive, ExtremelyInformed and Experiencedindividuals and families. Please feel free to ask any questions; there is no such thing as a dumb question on any of the Message Forum Boards and everyone is welcome on all forum Boards.

Erik, you said everything so good, and said it all for me too! Why don't you come to these Boards more often?!! please do, Erik.

Hugs all around,
"Gramma" Carolyn J
LOBPI--almost adult at 70


Message was edited by: Carolyn J

Well I use to sit around and think Maggie wouldnt do alot of things. But now that she is six, I sit back in amazment at the stuff she does do.

I didnt think she would get where she wanted to when she was a baby but she just sat on her butt and scooted everywhere she wanted to go. I didnt think she would ride her bike but she does pretty good at it of course it is with training wheels and she only turns one direction but she manages to get where she wants to go. This last year she learned how to zip her coat but it has to be a boys coat and she learned how to tie her shoes. I am amazed everyday by her she is such an inspiration to me. She has very limited movement in her arm and hardly any movement in her wrist and fingers but she manages.

Im sure you will experience the same things as your son grows up. If ever you want to talk my email is mommieinneed@aol.com

eolson - I just love that!! make anything out of thermoplstic and velcro!! what a hoot!! I've done a bit of that myself

to the original poster - it's really scary when your child is still a wee one...but in time as they come into their own and get taught that they can do things any way they want and they take off - well then you wonder - gee why was I so upset in those earlier years. Why? I was scared to death, too!

Your little one is 10 months old. My big one is 10 years old and she's a drummer! and she does aikido and dancing and is in the choir and has so much fun in life. The big thing is to make sure you are not raising them to be victims - but people who embrace life even if there are differences and just blast through it all. My daughter has taught ME so much. Yours will teach you, too. Just you wait... get that baseball uniform ready and the soccer cleats ready and the karate uniform ready......you're definitely going to get a run for your money

Blessings to you and your baby,
francine

Welcome to our "family"!

I too was born and ended up with Erb's, though now you will find that most people refer to it simply as an OBPI.

I grew up allowed to do just about any activity I wanted. Biking, swimming, ballet, figure skating, playing the clarinet... I competed in skating until I was 28 years old and LOVED it!

I became a physical therapist and a teacher, I taught pre-k in the AM and figure skated/coached/did athletic therapy in the PM and weekends.

4 years ago I ended up with a rare autoimmune disorder and was forced to stop skating. I went back to school and became a nurse. I love it, this is what I was meant to do!

Just to show you.. us BPI's can do anything we put our minds to!

Marieke 32, LOBPI
http://nurse-to-be08.blogspot.com

Welcome to the message boards. To answer what your child's injury will turn out to be or what his limitations will be or not be, nobody can really answer that. Every child's injury is different. Some children are very similar, but still they are different. You are on the right track, therapy, educating yourself, seeing a wonderful BPI specialist. Good for you!

Encourage your child to try many different things as he grows, because these kids can sometimes surprise you! Just after kindergarten started last year for my daughter, Amber, we were at the playground and she all of a sudden started swinging across the monkey bars. Now any parent on here who has a child in the 5-10 year age group knows, monkey bars are the thing they strive for, but many have difficulty and some never can master them. I was totally dumbfound by her new skills! She had been practicing during recess at school and showed me that day like it was no big deal! She does tap/ballet, started yoga over the summer, plays soccer with her older brother, dances around like crazy, tells everyone she's going to be a cop when she grows up (I know, I'm scared), and there's no holding her back! She has some limitations, and we work through them. She just tries and I encourage her. She knows no different.

Feel free to ask any questions here, and ask for support in any manner here as well. We've been where you are now, and there are new families who come every day. No question is silly.

Tanya in NY
Amber's Mom, ROBPI, almost 6!

I also have a six year old daughter who has managed to master everything she tries (except the monkey bars, of course!) We even took the training wheels off of her bike, and we ride about ten miles a day as a family. In case you think her case may be mild, Dr. Waters recently had video taken of her for UBPN as one of his worst cases he's now treating. I think it is just the constant trying and failing and eventually just getting it. And it seems that I hear over and over about their wonderful spirit. My husband says she's a "spitfire"! We love it. Days I get a lump in my throat are the days she's the strongest willed. They really are like any other kid, only "specialer". You seem to be doing just fine, and managing the emotions that we have all had to face.

I also have a 10 month old son, his left arm was injured at birth. He also does therapy twice a week. He has gained a lot of function, but we too were just told that at this point, he's going to need surgery to gain more function. His progress slowed a lot about 2 months ago. We had an MRI done and found out his shoulder is subluxed and there is a lot less muscle in his left shoulder. We are scared just like you, but this site does help with answers and comfort from others that understand. It's just so amazing what he as overcome so far, his arm was totally limp for the first 3 months, and now he can move it with limited range. We encourage him to use it as much as possible and get so excited every time he does something new. He's such a sweet baby, he tolerates the therapy so well. I wish your son the best and hope you find the help you need. From what I have found on here form the parents with older kids, is that it all will be OK and the more positive you are with your child the better they will be able to deal with their challenges.
Meredith


Message was edited by: Kaiden'smom

I can't thank you all enough for your kind words and encouragement. As i'm sure many of you can relate, i want perfection for my son, and am angry and sad that he was deprived of something as a result of something so unnecesary. Your words of encouragement, especially from those who have the injury, are truly uplifting... i thank you all for your kindness and reaching out to another mom and friend....


Message was edited by: Kimberly1108