United Brachial Plexus Network, Inc.

Ava when excited about something (a dog she sees, an illustration in a book she loves, etc.) will tense up her arms and place her fist in her mouth and bite down. It doesnt hurt her and she only does it when excited. We have always chuckled at it and called it her happy look. Well, OT was concerned about it thinking it could be an issue of sensory overstimulation where I guess since her arm has reduced sensory input she is being overstimulated by other things. They have started her on a home program where every two hours I rub a brush over her arms, back and legs and then do joint compressions. Just curious if anyone else has gone through or been told this was an issue and whether someone can give me more insight on this. I am not opposed to doing this but just think its almost overkill. I chock it up to her being excited and at 17 months not being able to verbalize it. BUT I am willing to do it if they have seen it as an issue with other kids. Experiences?

There is a book called "The Out of Sync Child" that is about Sensory Integration. I believe it has some checklists or something that might be useful to see where your OT is coming from. I hear what you mean though about overkill. At one time we thought this might be an issue for our girl, but man after going through the checklists it wasn't as big an issue. I started thinking, geez every kid I know has some of these issues!!! I'm not trying to dismiss SI by any means, because I think for some it is a huge issue. For others, while it might be an issue, it is not as huge.

Thanks, I'll look into that book. Some days it just seems like I have to prioritize what our issues are with this injury. I dont want her to spend the bulk of her time in therapy or home therapy programs, I just want her to enjoy life. I'll check that out and take a look at the checklists. Hopefully it will give me abetter understanding of what their concerns really are.

Juliana has sensory issues. Though she didn't bite down, she did other things.

The brushing technique is very standard issue sensory treatment. Every two hours...well, we didn't do it that much. We brushed her in the morning (most of the time) and we brushed her every night. I also got a bunch of different fabrics and would rub those on her too. I left them in the therapy box(a box with therapy toys) and would rub her with them if we were just watching tv. I know that some "crafty" people have made fabric balls and mits and stuff.

Some kids have sensory issues from bpi and some kids just have sensory issues. Brushing is a small thing (as are compressions) compared to having a school aged child who has major unresolved sensory issues.

In my opinion, brushing is easy to add to your therapy routine.

good luck,

claudia

oh, and check out the book

Be alert with sensory issues. Emma has them. When she was very young, it was more noise and vibration. She would freak out every time I ran the vaccum or her brother switched on the bumble ball or even the little soft playschool cars, etc.
Now it is more of an "overall tactile" issue. She must touch as much of her body to something at all times--while eating, drawing, reading... It's really very hard to describe, but she cradles her body over where ever she is!
She only tolerates certain fabrics and NEVER turtle necks.
I've talked with OTs/PTs and they say it's common for sensory issues to go from one area to another and that is really best to find a therapist that specializes in this area (of which there are none around me!!!)

Peggy

Hello,
It is actually pretty common for BPI kids to have Sensory integration. My BPI son was diagnosed with this last year. Luckily he was already in therapy for his BPI so they started sensory therapy. My son is in first grade. He was diagnosed last year in Kindergarten. SID affects kids many ways... he lacked the ability to copy, plan for movement, balance issues, always leaning, hyper, attention weak. He cried as if he was in severe pain if he wore shoes, then pants. The brushing really resolved that. We also did cognitive and perceptual therapy. Well one year later he is much better and now reading at 2nd grade level.

INteresting. Ava hasnt had any sensory issues though that I have observed. She tolerates clothing, people touching her, etc. Noises dont startle her. The only thing they are basing it on is her getting excited over things. She did it today when I took her to a park and she saw chickens--she was excited so she put her hand in her mouth and tensed her arms up. I suppose I will discuss it with her specialist but it just doesnt seem like it is really a problem. I truly think she just doesnt have the ability to express at 1.5 years old how excited she is so she does this.

Was anyone referred to someone who diagnosed this or did the therapist tell you thats what it was so you began home therapy, etc.? I guess I just feel a bit irritated that she would "diagnose" her without referring me to a specialist. These kinds of diagnoses stay with kids into school and if they cant say with 100% certainty that she has a sensory issue then I would rather it stay out of the records.

I appreciate the responses. I am trying to keep an open mind here and of course will do the recommended therapy, I just primarily am concerned with disorders being misdiagnosed.

She is only a year and a half... kids get excited at that age. I have sensory issues and still have them no matter how much they touched me and worked with me. I am of course much better but still hate overhead or flashing lights. I hate the feel of some fabrics and don't wear anything tight on my right arm.
But I was like that as a child and did not know how to explain what I was feeling. They often called me "The Princess and the Pea" because so many things bothered me.
I would look into this a little more. I have Horner's involvement and that could be my problem with overhead and flashing lights.
Kath

I could be TOTALLY wrong, and if I am I'm sure (I hope) I'll be corrected, but I thought Sensory Integration fell under OT is most state programs. Anyone know for sure? Are there SID "specialists" to be referred to?

I think it is smart to be sure about the diagnosis. It seems like a very subjective thing (based on my limited research), and I can imagine people are misdiagnosed. I do know of at least one family that was misdiagnosed...it wasn't a BPI family.