United Brachial Plexus Network, Inc.

oh Kath soooo Katie!!!! But we found the brushing program helps...a little!

When I read all the posts, over the last ten years about SI, I so identify with the frustration the children feel. The Mother side of me also feels for the parents. There are no Physicians explaining this side of bpi to the parents and it must be very frustrating to see your child acting out on some of these issues. Now I know why my mother always read me the story of the "Princess and the Pea". She use to say that was me and she was right!
She let a lot of things that I did go! She tried not to make a big deal about some of the things that drove me crazy.

Now my husband has to deal with some of these issues. It's a good thing he loves me... he calls them my quirks but he has worked at camps with me and fully understands all the issues I have. He still laughs and for some reason thinks they are cute ( at my age??). The children will do better if their parents understand and help them to accept themselves and understand that we can control some of it as we mature. We learn to work around it and to position our selves to prevent some of the issues that drive us crazy.

Katie can and will let herself be brushed? That is amazing because I can't stand anyone to even rub my arm.

One more reminder to parents, please! Where the children are seated in school can make a big difference in their behavior and ability to work in school. As each injury is different so are the sensory issues related to it.

Kath robpi/adult

I never thought about were he sits in class... I know latley he can't get his work done in class... I wonder if thats the problem. Of course Thomas can't sit still and if he is told to he is to busy trying to be still and can't think of class work.. He has tested High on IQ test. But you tell him to sit still he can't do his work now if he is able to stand and read wow.... or move during spelling test and math its amazing .... What is the obsetion on lining things up. He has always done this. I found army men all the way across the kitchen the other night all lined up perfect for war...lol

Carron

Sitting still was always so hard for me. I worked the hardest on that. My Mom use to tease me and say I had Ants in my pants. My fanny and a chair only had a passing acquaintance. I don't know about lining things up but I do like things in order. I'm neat and like to keep things that way at home. Check and see where he is sitting in class. I have a personal theory that girls will probably shut down if in an uncomfortable place and boys could act out. I could not focus and shut down when i was in the wrong seats.
Kath robpi/adult

We haven't run into any problems with sensory issues that she complains about. She experiences some diminished ability to notice a sunburn and then it's flaming red before you know it in comparison to the other arm. Nothing else.

Dear Tanya,
Yes, it IS a sensory issue that we Bpi-ers sunburn fast on our affected side and usually can on the nose also and not be aware that we hare burning.. Our Affected limbs are very prone to that.

Have a great day & HUGS all around your house,
Gramma Carolyn J

Tanya
I was a much older adult before I realize that I can't feel hot on my forearm at all. I never realize the reason I sometimes burned my self in my up stairs shower was because I tested with my right forearm. I would test the water because I got in from the right side and then yelled because my body could not take it.

I think as children we are not aware of the lack of feeling on bpi side and some of the SI are not something we complain about. I hated to wear any tight clothing (still do) and use to put my face down on the desk when I was writing so the light was not in my eye. I have Horner's so perhaps that is the reason for the light problem. I sunburn very easy, because of my coloring but once again thought I was lucky because the right side of my face as well as right arm did not hurt as much as the left one did.

I had no idea that the reason I had to taste my kids bottles was because I had no sense of heat on my right forearm. I can't supinate so I tested their bottles on my forearm. Poor little things would scream, till I finally on tested it in my mouth. So dumb. The lack of feeling is hard to describe or put into words. I think it's the same reason that a gentle touch can send many of us in to a rage... It often feels as if someone is hurting us and they really are only tapping us or touch us. I know many adults with that problem.

I can't feel a pencil in my hand and I think I have some feeling. I use to squeeze the pencil till my knuckles were white. No one realized I could not feel it... not even me. I loved to have a pen because it was fat and cold and easier for me. I was forced to write with bpi hand and that was such a horror for me. I learned but my hand will still cramp up. I only realized that holding a pencil I can't really feel it.

I totally count the sunburn issue as a sensory issue. I was just trying to say there wasn't anything that she complained about but rather something I noticed.

Thanks for sharing the story Kath. It seems so simple to have figured out the shower and bottle thing now, but how would you have known in reality? You know no different. Interesting stuff to pass on.

Tanya
I never really focused or paid much attention to my arm. I had no one to talk to about it because my Mom died when I was 28 and no one else understood. I'm glad she gave me so much information so young. I don't think she was aware of many of my sensory issues. They told her I had would be fine and she did not know I had a global injury. They said the Horner's would resolve on its own and she believed them. I hide my issues very well and only close friends and my husband are really aware of them. Each of us have different sensory issues because of the way the sympathetic nervous system is damaged.
If you don't notice issues maybe she has much less of them. That would be great!

i tend to walk into things with my hands... even my unaffected one. I can't sit still anywhere, i'm constantly moving!! I cant feel my left thumb much. i've always found it very odd... my upper arm (elbow up) is fairly sensitive, but from the elbow down, i don't feel much...