United Brachial Plexus Network, Inc.

Is it common for children with BPI to also have sensory integration issues? How/Where can I get more info. about the possible connections?

Hi - we've seen it spoken about here - some kids with bpi have it and some don't...

There's a great book to read about it...

The Out of Sync Child

Read it and see if you find similarities?\
-francine

I think this is really necessary to look into.

Many adult/obpi sit very little and also think that sensory integration may be part of this injury for all of us. Many say that they were super active as children and annoyed by tags clothing that “itched” tight and also the inability to feel hot and cold properly. Many did not realize this until they were mature adults. Some of us chewed on fingers arms etc.

There is an 18 month old in my area that is getting service for this and her mom said it is really helping her. Her Mom says her injury was mild compared to other children but she still had sensory integration issues. I went to her home and was present for her full session with PT/OT/sensory integration/ and Early Intervention evaluation.
Thanks so much for having me over it was very educational.
(If your reading I hope you don't mind me mentioning this)

Early Intervention provides this service in NY. I think it is great to address all possibilities at the earliest age possible. If we loose some feeling it stands to reason we lack sensory input. If this is addressed early in life it may prevent a child from future difficulties.

Kath

I think that sensory integration issues in bpi kids is a little different than in average kids who have sensory issues. Our kids have sensory issues because of the poor wiring to their bpi arm. Most don't have issues on the other side. Average kids with sensory issues usually have them bilaterally. Of course, you could have a child who just has sensory issues and happens to be bpi. Does that make sense? Juliana has/had sensory issues which seem to come and go as she gains movement, loses movement, goes thru growth spurts...One winter she could not stand to have her winter coat on. The next, she didn't mind. However, some things have stayed with us: she can't have a shirt touching her fingers (must be rolled up) on the bpi side, she has a very sensitive scalp, she doesn't like the feeling of grass on barefeet, some clothes are clearly more comfortable than others.
From what I have learned about sensory issues, I know that one of my other kids had some mild issues. She has worked them pretty much out (she's almost 8). And, she is "normal" now (okay so I had some questions when she was little!!!).
You should look for an OT who is trained in sensory integration techniques. Also, brushing with a surgical brush and rubbing with different kinds of fabrics also helps.
claudia

Claudia

You hit it right on the head.... It is the bpi that seems to create the problem and I think that is different then children who are suffering from sensory intergration...

Jackets, sleeves rolled up or down... walking with people not on our bpi side.... SEAT BEALTS on bpi shoulder... clothing too tight... someone talking to you and touching the bpi arm - even just a tap can be soooooo annoying... all the things that do not bother you on the unaffected side and when we are uninformed we really don't understand what is wrong with us... seem to be like the Princess and the Pea... I heard about that story so many times as a kid... Still to this day... I am careful where I sit for dinner... keep husband to my robpi side... this way if someone serves from that side he grabs it... I do not precieve that anyone is on that side of me.... I guess body boundary is also an issue it seems to be missing that's why we poke people....

Thanks Claudia for point this out... it may help some who were worried....

Kath

Thanks so much for all of the helpful replies. My 5 year old is demonstrating lots of issues with sensory integration. I am going to try to locate an OT/Pt who specializes in this area. Does anyone know of someone in southern CA who offers services in this field?

We can relate to some degree, only we want to throw in the behavior / attitude thing as well. We have here what we fondly refer to as the WILD CHILD SYNDROME. Little sleep, high maintenance, flies around rooms backwards, more sensitive to drug side effects, tags, clothing, you name it and she is it. Of course her being spoiled has nothing to do with it. And don't you ever make the mistake of touching her without letting (and getting permission) her know first(shudder) . Kath--how did you guys handle frustration? Crowds? Background noises? you get the picture, right? She too has decided she is NOT wearing a jacket this year. Never bothered that much before but she is determined to wear a "babing suit" for the rest of her life. And heaven help the poor soul that has to butt heads with her--usually me. And her teacehrs are so amazed the first time they see one of the small tantrums! I don't know whose kid they are talking about half the time until they mention how she corrals the other kids, giving the orders like she is an adult..lol, she has even called the teacher down for using a harsh tone one day, told her that wasn't nice, wasn't ok and she may have to go to time out if she didn't straigten up. No wonder she can't handle the estim!

Ahhhhhhhhhhhh yes I remember the good old days.... LOL... Frustration is our constant companion...
It is the ordinary things in life that others take for granted and as they piled up they to get to us... Of course when we grow up we learn how to handel it most of the time...

I took a parenting course not so long ago and I was amazed - they spoke about the hard wired child...
I was not aware then that bpi may have caused it for me... but - one of the tools they suggested was a punching bag - blow up type...
I had one and was told I could hit it but chould not hit others.But so did lots of kids when I was little it was a popular toy.
when I was angry or frustrated it helped prevent melt downs. This course I took explained how children needed a place to put all the pent up energy and discharge pent up frustration.
My kids had them too because I thought it would be fun. I always thought how lucky I was because my kids were really so much less short tempered as children. Now I know why!
I am married to an Italian when he forgets and touches the bpi arm when he is talking you should see the glare in my eye... but he still forgets... I don't know why. Maybe we can't precieve your next to us ( like with the hair on your arm stands up or you feel the breeze of another person next to you) I also startled very easy when I was young. Thank God I mellowed...LOL... and now that I fully understand why it makes it so much easier to accept.

Christy constantly having your personal space invaded it very annoying. Some how people just know I don't want them in my personal space without permission...LOL...
Francine helped me at PA picnic and asked first if she could touch my shoulder back .... LOL.. and she was teaching me about tapping and helping me...LOL...

alasangel....did some cleaning and came across my copy of the book...if you email your address I will be happy to send it to you.

francine@injurednewborn.com

Last week my PT was talking to me and I was telling him how frustrated the kids get and how parents try to understand how the child feels.

He suggested and demostrated on my unaffected arm how to feel (almost) as restricted as your child.

Kineso tap wrapped around your arm so that you cannot supinate or pronate as the case may be...

I wonder how many would wear it for a week or a day?
also using a string to limit your range of motion tie it to your belts....

See how frustrated you get... It might help you to understand the frequent melt downs... Not that the child does not have to learn to adjust be cause we just have to inorder to grow up normal... but it might help keep the parent sane at those times if they could relate to the feelings...

So far no one in my family wanted to try...LOL... they think they understand fully... and don't need a demo... LOL...
Kath