United Brachial Plexus Network, Inc.

My granddaughter is 10 years old .Her mom had gestational diabetes found out darning delivery.so all that growth harmon cross over to the baby who weight was 10 pds at birth .She was oxgyen deprived and the BP or erbys palsy was at the time our main concern. Now we are dealing with a lot of emotional and behavior troubles.She has melt downs and is add and can only take add med"s for a few weeks at a time because her body holds on to the meds She is always looking for something to eat .So we have not been able to get her weight down .I understand to most people this is a comfort issue.But to erbys kids I don't know .Please I want to help my sweet granddaughter Who is one of the sweetest kids .If any of you have any thoughts on all this please help me I just feel like it is a big connect the dots thing but I just don't know how
Thank you so much for any help
Margaret

I have 2 kids on meds for ADD and both of them have no appetite and it is hard for me to get them to eat. My 8 year old had emotional breakdowns terrible before we began meds, now she is a completely different child. She was failing school, but now does most of her work without her aide and is doing very well. She is on vyvanse and my son is on strattera.

My son(ROBPI) is 11 now and seems to be more self conscious regarding his arm now more than he ever has been. A girl called him a "cripple" a couple of weeks ago, that hurts. Is your grandaughter having trouble with kids at school? Around 3rd grade is when we started noticing a difference.

Your grandaughter is lucky to have such a caring grandma.

My children 12(non-bpi) and 10 BPi both are on meds for ADD when the meds stop working I know it because they eat me out of house and home. both my children became problems at school, emotional meltdowns and wouldn't sit still at all. They probably havenot founf the right med for your grand daughter. i know once we found the right one, it was an incredible difference.

GAYLE mom of Brandon 10 ROBPI

I wonder if many of the children with bpi are being treated for attention deficit when it's actually sensory integration.

I have a major problem sitting still and when I was a child the location of my seat in the classroom had a profound effect on my grades. If I was sitting in a corner with no one behind me and no light overhead or window with sunshine in my right eye... my grades were better and I was a much happier child. Where I sit in any room has an effect on how comfortable I am. I know it sounds weird but it's true. I was an adult before I was able to understand all my little well hidden quirks.

You all must remember bpi children are frustrated way beyond their level of maturity to understand. I once wrote a long piece on what it felt like to be so frustrated and no one truly understand.

Think of how many times a day you use both hands to do simple ordinary things... Going to the bathroom is simple and quick for most people but not for bpi kids...
Everything we do presents a challenge. Every new task requires us to analyze it and see how WE can accomplish what is second nature to others...

Frustration is the constant companion of an OBPI. Even as an adult I often get so frustrated when I can't do something I want to do. Sometimes I start to do something and realize later I need two good strong arms to do it... Then I want to jump up and down... but I don't because I'm a bit too old to do it. But melt downs seems to be the only outlet for bpi kids....

Right now I am going through a very fidgety stage. I get restless during my sleep and wake my self up and just can't settle down. My friends usually let me pick my seat in any restaurant. If I were in school today I'm sure my parents would have get calls because I can't sit still for too long. I shut down in school and did act out. If I were in the middle of the room I was on synapse overload and just shut down. Sometimes in large crowds I still go to the back or sides of the room...

When I read posts like this it reminds me of all the frustrations faced as a child with bpi. People just don't get it when were young and we learn to hide our little quirks and/or avoid some of the things that make us uncomfortable...


I guess because recently someone commented on the fact that I fidget in my seat and never really sit still this topic hit home. My family and friends are use to my constant motion but new people still notice....

Kath robpi/adult

I would seriously recommend getting an Evaluation for Sensory Intergration Dysfunction and/Learning Disablities as these kind of behaviors often has been symtoms for SID and othe other conditions. Children with OBPI often don't have language to tell Parents or teachers and behave in ways as you discribe,Margert.
Good Luck in geting your Grandaughter Help and Evaluations. Please keep us Undated. We al learn from each other along with giving support.

Carolyn J
LOBPI/70


Message was edited by: Carolyn J

Thank you all for this information I am going to look in to it now I feel so bad for Hope because she wants to comply but she has a hard time and you are right in the her words she all ways tells grandmaw I have to get fix what ever she id doing it has to be a special way.Oh Thank you all so much.I took her to the doctor today and they put her on adderallxr.Maybe that will help her until I can find out about The other will keep you posted.And you are right until I found this place with all of you I had no one to talk to all they saw was the shoulder and arm.Her asthma is the worst it has ever been as soon as we get through this I am going to look into the senory thing It must be that This is enlighting but another question ? She complains I cut the tags out of her clothes seamless socks, no bras will do yet, brushing hair is hell ,Never completely dark always a least a night light Dose this sound like anything?

"She complains I cut the tags out of her clothes seamless socks, no bras will do yet, brushing hair is hell ,Never completely dark always a least a night light Dose this sound like anything?"

That is EXACTLY a sensory dysfunction "thing". I would also recommend you look into it as soon as you can.

Marieke 33, LOBPI

Margerat, I'l BUMP up the Topic Thread on Sensory Intergration Dysfunction..SID for you.
YES, tags and clothing textures are part of SID.

HUgs,
Carolyn J
LOBPI adult