United Brachial Plexus Network, Inc.

My name is Anthony and you rarely see me post. I have gone through a lot due to my Lobpi, but instead of just talking about me .I was wondering if any parents or teens are wondering what the long term effect could be. Since I have had no medical attention to my arm I am sure I could give you a great insight on the maybe and what ifs ...my email address is Lucid_707@hotmail.com to those who do not want to post a personal question...I am here if you need me.

Anthony

Oh Anthony I am sure you will get many takers and questions. Bless you and the others for sharing with us parents.

I think my number one question however may not be for you but I will ask anyway. As awareness about this injury and treatments grow we parents seem to be constantly working our kids. How are they going to feel about that as the years go along? I would imagine as an adult they will come to appreciate all we put them through. Even as a toddler we hear I just want to play, leave me alone, I don't want to go there today, please stop touching me...you get the picture.

Already we have learned that we must let our kids grow with their strong wills. But how will our kids feel when they are dressing for gym, or just going to the bathroom and it takes them longer or their scars are obvious? How will they feel about needing help for simple day to day routines that others take for granted? What kind of jobs are going to be open for them without taxing them so much physically that they have to retire on disability before they are 40? How do I prepare her now for the onslought of remarks she will hear throughtout her childhood/adolescence about looking different, the teasing. How do I keep up her outrageous self esteem long enough to make it through the hard years of teasing? But mostly, I think anyway, I like to hear from the adults about their lives, success, accomplishments, etc so that we know in the end--our kids are going to be a-ok..in spite of us!

heyyyyy, oh but I DOOOO want you to talk about YOU if you dont mind
what was your injury like at birth, do you know? when you can first remember?
was there pain associated with it?
you say no medical attention, great, so do you mean no surgeries?
what is your arm like now? how old are you? what kind of work do you do?
did you do therapy? were you an active child?
thanks for sharing, if you prefer not to reply on the board feel free to email me, mom@bellsouth.net
peace and blessing blossoms

I have had No therapy whatsoever and that means Physical therapy also! I have had a hard time trying to find a job for myself,I mean what can you do with 1 arm? You dont want to work out one and not the other you think it might look way bigger than the other but now at 24 I have done enough research to realize what I can do and what I can't do. I know we all hate to have limitations but you will have to realize there might be some I mean all of us cannot be astronauts or mountain climbers. But as long as we keep educating ourselves and our children and try to the best we can they will appreciate it. Let them know that the struggles they go through now will make them better later on.Kids pick on Kids it doesnt matter if they have glasses, Pimples, Big noses ,big, tall,fat or skinny the only people who get picked on are the ones that let that type of stuff get to them. We are born strong with will , it would be stronger with our parents behind us don't fight our battles teach how to overcome them we must learn for ourselves even when you see them struggle it will be worth it.

As for me I was born 7 months, premature only 5lbs 11oz and Breach My arm was like a little wing for the longest time ..the doctors told my parents it will go away and I will grow out of it .I didn't find out till 22 years later I had an LOBPI I had always had problems but I always worked around them I never knew I couldn't do alot of things until they were brought to my attention brushing hair, putting on a belt scrathing my nose or things like that ..but now that I know I am working on a possible solution..

If I didnt get all the questions ask again I will get to them and thank you for being involved your child will love you for it

Anthony

Just wanted to tell you how very much I appreciate your willingness to share. It means a lot to many of us! I plan on emailing you in the future as well. Thanks again and please keep on sharing! Best wishes to you.

Feel free! I am trying to get as involved as I can and hopefully meet every single one of you. because this typing is cramping my hands j/k . I hope you feel that I can help you just as much as you all have helped me without this site I would be lost and not found.

Thanks..I think I misread in thinking you were TBPI, not that it matters in the long haul except I wasn't sure you would know what our kids felt. That's what I get for thinking!

It is so very helpful to us when the adults tell us their stories, struggles and solutions so keep talking! We hear so many of the adults saying I didn't know what it was until...hopefully someday with all our awareness work this injury will not only happen less but be acknowledged and treated (in whatever format) very early.

Have you met Carrie and Michelle (I think that is her name) yet? They are pretty close to your age and have been wonderful!

Thanks again!

Christy

Anthony:

I am new person to this website. I found it about a month ago. I am a 31 ROBPI. I think it is great that you want to help others.

I have not ever had any type of surgery, but the older I get the more painful things become. I am speaking w/Dr. Nath in Texas. I hope & pray that he can help me.

I have 2 children (11 & 8). They know what happened when I was born. I have raised them to understand that no one is perfect. There is a little boy at their summer care that has a medical problem & other children want to pick on him. My 2 are like little rebels that stick up for him. I always tell them not to be rude, make fun others, because I have been on the other side (like the little boy at the summer care) & how would they feel if someone was making fun of me.

I know that I said this before, but finding this website makes me feel like I am not the only one out there with this problem. I never knew of anyone else having a BPI from birth.

I read the new post every day & can relate to so much the parents are saying. It's scary to think of it from a parents view. I now can see through my mother's eyes due to the parents on this website.

Thank again!

Deanna

Well I am glad you found the website.You might also find alot of comfort knowing you are not alone. All of us have someone to go to as long as we have these message boards . So please don't be shy especially you lurkers come on and join the fun we are all here to help and get help!

Well thanks ! This is Agony Ant hollerin back at ya . All unique in the same kind of way the injury very much alike but peoples or families reactions Totally different! if your older and have the same problem as me your parents probably suffer from an extreme case of Denial! if your a parent Please don't be in denial just get through this one step at a time. Believe me we'll remember..Well keep it live and as always release the Id...