United Brachial Plexus Network, Inc.

Sorry everyone, I must be Anon.

I have a 3 year old child with an OBPI. My child has been increasingly irritable. Lately she has been lashing out at other children at daycare. She has bitten, scratched, even caused another child's nose to bleed, all in the last week.

My child had a very bad temper up until she had her first surgery. The Dr. discovered a compressed nerve, and when she woke up she was a different child- happy and cheerful. But lately she has been, well, very irritable and even mean.

So here is my question. Do you guys think that she could be in pain again? Do you think this behavior could be a result of pain? I am just at a total loss here, and I am looking for some direction.
Any advice is appreciated. thanks.

I think you better check with your doctor. If she acted this way when she was in pain before, I would take it as a sign that something is wrong.

On the other hand I would also check to see if some children are simply touching her arm. When I was a child, if another child touched my arm, I hit them. Of course, my mother put me in time out... And I would tell her how they hurt me. No matter how many times she would try to explain to me that they only "touch you." I would insist that they hurt me.

When we were at Camp in NY, a few years ago, Dr. Belzberg explained about the mixed up pain message. He said that our brains were getting a pain message from a simple touch. Instead of getting a message of a tap on the shoulder I feel as if someone is attacking and hurting me. I know that many adult/obpi have the same problem and his explanation proved that we were not nuts! Some of us had regular argument when our husbands touch our arms... they could not understand our over reaction.
It has to do with they way the nerves regenerated. What is a simple touch to an unaffected arm will send a pain message of being attacked or hurt in our bpi arms.

I hope this helps with some of the behavior problems.
But please check with your doctor...

Kath robpi/adult

Kath-

Thank you so much. I have checked with her dr- we are seeing him next month and we have a CT and MRI scheduled- I hope we can get to the bottom of this.

I searched the message boards, and found a wonderful post of yours about BPI and behavior problems...Here it is.


"One of the behavioral problems with bpi children is our frustration level...

Did you ever have a day when everything you tried went wrong??
When you dropped things because you were rushed?
When you forgot things?
When just everything you tried to do went wrong?
Welcome to the world of the bpi child....

We are challenged to do the ordinary.
We want to reach out but we forget we have another arm/hand unless reminded.
We want to jump rope but can only turn with one hand and to do it with both hands takes lots of practice, but not for the other kids....
Trying to play patty cake, clapping at a play, carrying a cup in one hand and a plate in the other...do you see what I mean
Someone is always pushing us on... use the arm... use your other hand... touching you and exercising you when you don't want to anymore... or you just want to play like the other kids and you have to exercise your arm again!!!!!
(Don't get me wrong...this has to be done and I am so thankful my Mom... nagged me to death...to move)

We are forever compensating for the loss of our arms and our ability to use our hands in the same fashion we use our unaffected ones. and the ordinary use that is expected of that arm...

That is why we appear to have a shorter fuse when we are young. That is why we react like children and become angry and frustrated... everything is a challenge...

I hate competition because I have been challenged to learn anything I wanted to do. So I don't compete with others I do however compete with myself. I have to try everything from painting to pottery to gardening to pruning shrubs...just to see if I can.

I really feel that we are NOT behavior problems.

we have frustration beyond our maturity to cope with...

There is a good side of this, we become strong, creative, stubborn, persistent and we do learn to compensate.

If your bpi child does not become stubborn they will never learn to move or to stick to a task until they can do it... We must be stubborn to survive...and you can't have it both way... mild easy going one minute and stubbron when we have to work to move....
Just my view from this side of the injury... we do mellow out... but it take time... I know because they thought I got frustrated and lost my temper when I was young too... and my Mom was a mild person... they just did not understand the high frustration level....

Tie your arm to you belt for a day- not all the way just enough to restrict your motion like your child's... and let everyone tell you to move it and try... see if you can carry two things at once.... this might give you some insight into the reasons for frustration....

Frustration is the constant life time companion of the obpi child/adult.... I still face moments when I just want to jump up and down or throw something. Not often anymore,just once in a while when it dawns on me I can't do something I really want to do.

They are little and do not have the words to express their frustration. Look at it as their VENT they need to let these feeling out... maybe a pillow to pound on for those times might help..."


This was so touching, it made me tear up. I hope you dont mind, I included this passage of yours in a letter to the daycare. I am going to have all the staff sign it. I want them to understand her... not just think she is mean.

Thanks so much. Sorry I must be

Anon

I'm so glad you reposted Kath's previous post about behavioral problems. While reading it, I found it difficult to read. It took a few minutes to get through. Thank you for reposting it, and thank you to Kath for originally posting it as well. In fact, I copied and pasted it and printed it for my refridgerator so everyone who comes to my home can read it.

Tanya in NY
Amber's Mom, ROBPI, almost 5 years old

YES, THANK YOU ANON!

I hope this post of Kath's is a help to all Mom's,Daycare providers and teachers. Children need compassion and a HUG at these times when they are expressing their pain and/or frustration(it can be both at the same time).

My own siblings do not know me; I am going to send this Post to them.

HUGS all around,
Carolyn J
adult LOBPI/69

Wow that must be an old post because I didn't remember it at first.
But, as I read it, I remember all to well the frustration.
It's so hard to explain frustration at every turn to someone.
Children really don't understand why they feel out of step.

I'm with Carolyn about family understanding.
I truly believe only my Mother understood, all of the day to day frustration I had to deal with.
She was a very clam and gentle person and that is exactly what I needed.
I am blessed because my husband views many of my quirks as funny and when we were young cute... ahhh love is blind.
He truly understood once we found UBPN and we both learned more about my injury.
My children and my friends were so excited,for me, when I found UBPN.
My siblings have no interest, when I tell them about UBPN and what I've learned and what I do...
It's a roll of the eyes and yawn sort of thing...
Only my oldest brother is in the least bit interested.

I am glad this post helped you or any child.
Hearing from someone who lived it, might help more than a form letter explaining away a child's behavior.
I'm glad now that I wrote it and hope it helps. Sometimes I feel as if I am giving too much information.

Frustration is part of everyone's life, OBPI children just have to cope with it so much soon and on a moment to moment basis.
It takes a strong, patent parent to raise an OBPI child.
We need correction and understanding in order to function in society.
But it's a fine line between understanding and spoiling and one that must be so hard on the parents.

Kath robpi/adult

Kath-

Your wisdom touches me. How I admire your mother- I pray every day that God will help me walk that fine line between understanding and spoiling. You have helped more than you know.

My in-laws do that rolling of the eyes thing- maybe I should give this post to them. I get so angry at their disintrest. It's like they think I blow this whole thing out of porportion. I keep telling them- ITS NOT JUST AN ARM!!! But this is just a small battle I fight in this war I am fighting for my daughter. It is good to have allies here.

Thanks so much. Sorry I must be

Anon.

Anon,
my own FATHER does not understand my son, nor does he try to. As long as Brandon can be an athlete, that is good for him. He basically dumped me to the side because my son was not perfect, nine years later, I still do not talk to him unless it is a neccesity. You know the wedding and funeral thing. My child to me is as perfect as can be and I love him unconditionally, oh, yes, the fine line between spoiling and dicipline, I think I failed that part. Take Kath's advice, it is always good to listen to someone who has lived it. Carolyn and Kath have helped me so much through the rough past couple of years. Gayle mom of Brandon 9 years old ROBPI !!!

ANON,

Kath always says things so much better. There is a treasure chest of information from alot of us adults on almost every subject on the "Adults With..." Message Board, you are welcome to post questions there too or just type a subject in the SEARCH FORUM box to bring something up. There are No Dumb Questions in our UBPN Family. I am happy you found us.

HUGS all around,
Carolyn J

I still get frustrated sometimes. I feel like I have a shorter fuse than I did as a child. For me, having a BPI just made me more reluctant to try anything. I didn't do things that I wasn't good at, and now I wish I had done them anyway. I tried volleyball for a while in junior high, but it was really just a blow to my self-esteem. I guess I always internalized everything, rather than lashing out.
I enjoyed reading the piece written by Kath. It reminded me how much I hated jump-roping. I couldn't do it forwards, but I could do it backwards! Unfortunately, that was never what we were supposed to do, and PE teachers were never understanding.
I think it's wonderful that you're sending that note to your child's teachers. I hope it helps. Also, it definitely could be pain issues. It's something I struggled with on and off growing up. I never had any surgery, and my arm is still extremely sensitive.
Good luck.