United Brachial Plexus Network, Inc.

When my daughter was two, three, four years old, she and I met with many specialists and surgeons regarding her best treatment and preparation for her future psychologically. Uniformly they warned that at about seven years of age, the BPI child will start asking demanding and exploring questions.

If I were to characterize my child I would say that she is jubilant, social and un-afraid. But in exactly the last five days (almost 7), she has been sorrowful. So unusual. I thought just tired from a long first term in First Grade, and less outdoor activity with the Winter. Then this morning, while I was combing her hair, she spun around really quickly and angrily, and looked me directly in the eye. She threw her arms up with her non-affected hand she grabbed at her affected hand and said: "Look it is shorter, and my elbow is really slushy [weak]" My daughter's BPI arm is shorter which is becoming more noticeable as she grows even more tall and lean for her age. She had the mod quad, but she is having trouble with the complete extension of her arm at the elbow.

Can anyone else out there relate to this. My daughter is very motivated to improve her functionality, and will do her exercises. Any suggestions for improving that elbow extension and use?

dunloe

It is natural to vent when one feels frustrated.
BPI children face a great deal of frustration and being allowed to express it helps.

As adults we call it venting.
I still have my moments but they pass quickly and having a good sense of humor really helps.

I know you feel bad and she is frustrated but children are strong and she will achieve so much more because she is challenged.
I believe I am so strong willed and determined because of OBPI. I also think it made me more creative.
I explored many hobbies just to see if I could do them not because I wanted to.
As a result I enjoy so many creative hobbies.

Try not to worry she will make it.

Kath (adult/robpi)

Dunloe --

My daughter is eight and in second grade. Just this week she told us she no longer wants to be pulled out of class for therapy. She said she is tired of being different. A new girl moved into our neighborhood this year and she is in my daughter's class so they are great buddies. Well, my daughter said that her friend had no idea she had an injured arm until she was pulled out for therapy and wanted to know why. She has also expressed disappointment about her arm not being straight and her active range of motion over her head. We basically let her say her piece, ask her what she wants to do about it and we try to listen and do as she wants. We asked her if she disliked therapy (she doesn't) and we came up with the idea of choosing a different time for her therapy sessions in school, like a recess or gym time. Some time that it doesn't make it so obvious.

My husband and I both feel she is simply tired of explaining her injury to others and wants to be treated like everyone else. I think Kath makes a great point that we all need to vent. I'm surprised that they don't vent more -- I sure would!

As to excercise/solution -- well, we've tried it all to be honest (except Botox). The surgeon recommends surgery but there are no guarantees that this is a permanent solution and her contracture is mild enough that I (and she) are not prepared to go that route.

Anyway, a very long post to say, we're in the same boat! What is 13 going to be like? Did the specialists give you any info about that?

My 2 Cents...

My teen years were the worst...
#1 I wasn't allowed to Vent or Cry...
#2 Everything was said to be "growing pains"
#3 once I told my Mom about the teasing...she said
"Don't pay attention to it and it'll stop"...(it
never stopped until high school), & I never
mentioned it again until I found UBPN in 2004.
#4 I didn't have my sense of humor until I
moved away to College.[Some say I should have left it there!]

NO boo hoo's, now! My point to share this is to please allow VENTING/Complaining and a bit of Anger or Tantrums that go away quickly. Emotional Issues are Secondary Injuries of our living & growing up with OBPI'S. It is stated in our "Resources" Link in "Medical Issues of Adults With OBPI" somewhere.

Email me if you would like me to find and send you the Article.

BTW, I am open & willing to answer any questions about any part of living with OBPI. There are NO dumb questions...& it is very healing to share if it helps the "Young'uns".

HUG all around,
Carolyn J
LOBPI/68

I guess that boys are much different than girls. My son has a ROBPI and never asks or complains. When someone says something he comes up with a funny joke or just tells the story. HE is in third grade and is 8 1/2 !!
I really think that boys are less bothered because the other boys in school think it is cool that he has a six inch scar on his neck and 8-9 inch scar under his arm. I hope I don't have these problems with him, as mom couldn't handle it. He does have a slight contrature, but it doesn't seem to bother him. And he does really well for himself. Good luck in your dilemmaGAYLE

This is a very interesting thread to be reading. I guess I've always thought that eventually Amber would ask some questions or express frustrations, but of course we have not seen this yet as she is only 4 years old and is so easy going so far. I get so focused on the physical aspect of this all that it's nice to hear about the emotional aspect of it (and have a heads up for the future years to come).

Tanya in NY
Amber's Mom, ROBPI, 4 years old

Tanya
You are in for a Roller Coaster ride.

I often wondered why my children seemed to be so much easier going than I was. They did not get frustrated and have temper flare ups.
It never dawned on me it was because I was frustrated when I attempted to do things and I couldn't do them.

School was the worst for me after 4th Grade and it continued right through High School and some teachers contributed to my problems.
I hated school! I hated gym!
Yet I loved the outdoors and sports just not in school.

I think these problems made me stronger, more compassionate and understanding of others shortcoming.
I also think the daily challenges made me develop more creative skills.
It is tough on us and I was so fortunate I was allowed to talk about my arm, ask any questions and vent.
I started to keep the teasing to myself because I did not want "Mama" involved. I could see it hurt her, so I took it and did not fight back. Today that would not be the case.

No child escapes teasing while in school.
If they learn to deal with it and develop a good sense of humor life is so much easier even if they are not bpi.

I'd like to think things are different than when I grew up. But human nature has not really changed and the kids will face teasing, stares and questions.
If they learn to deal directly with them in an open manner they will be better off. Knowing the answers to what was wrong with me from a very young age gave me power. It gave me an answer as to why I was different.

I still get tired explaining my arm to people.
I use it to educate now but sometimes I just don't feel like answering nosy questions from strangers.
BPI children will have to learn to deal with these issues long before they are mature enough to shrug it off.

This subject of emotions and being obpi is always interesting.
Each new phase of life brings it's own set of challenges normally for children but for OBPI children the challenges are doubled and magnified. It's part of life.

Kath (robpi/adult)

Dear Kwest
My son frankie is 13 he had the primary surgery at 11 months then a tendon transfer at 2. After that failed we decided to stop and wait. He had therapy in school but by 2nd grade no longer wanted to be pulled out of class especially during fun times like recess. He didn't want to be different so I did it all at home. At 13 when puberty and girls came into play he decided he wanted to do what ever it took to get his arm functional and to be like others. He also expressed a fear that if he didn't start doing something now later would be to late. So on Nov 9th he had the Mod Quad. He goes to therapy 3xs a week, wore a splint 24/7 for 6 weeks and now he must sleep with it for 3 months. He also started doing exercises at home to make his arm stronger. He has a bad elbow contracture and his arm is a lot shorter which he will have to have bone and tendon lengthening for. His hand is also non functional so he will need further surgeries for that but says he wants it all and if it doesn't works he says at least he knows he tried. Up until 13 he never talked about his arm except to say he was fine the way he was and it made him who he was. Hope this helps Mare

I have not been able to get my daughter to feel comfortable riding a bicycle without her training wheels. She says that it makes her "nervous." At our local Wal-Mart there is a man whose job is to assemble the bikes, today I really needed to pee, and I left my daughter with him while I was in the bathroom.

I came out and my daughter was beaming. She learned that it was important that her training wheels titter-tottered, she had been learning balance. And the man said that the best place to practice without training wheels was a great big grassy area. He assured her that her elbows and knees would not be hurt if she fell from her bike while she learned more to balance herself.

I could have never set my watch to this amazing kindness. In a very brief time I could see that her confidence was dramatically restored....

I love the diversity and surprise of our humanity!

dunloe