United Brachial Plexus Network, Inc.

Hello,

First my little Justin's story. Sorry for the very long post. I promise to be short winded in the future. Just a little overwhelmed.

My name is Sandra Baugh. I recently moved (back) to Madison, Alabama from Phoenix Arizona.

I have two children. My first was delivered here in Madison, induced early due to size of baby, my weight gain per my wonderful OB here in Huntsville.
We moved to Phoenix/Chandler and resided there for three years. During that time I had a second son. My second son was delivered on 11/05/01 at the Chandler Regional Hospital.

Last Monday, I took my son to his pediatrician. I thought something was wrong with his right hand. He never used it. My husband and I just thought for a time that he was just left handed. Never had a problem been mentioned by any of our pediatricians and of course he was cleared clean bill of health when he was born. We thought that maybe he had broken it sometime as an infant and it had healed unnoticed by us!

My pediatrician gave me a referral to a Sports Med doctor here in town, I went to see him last Friday. He x rayed Justin's arm and came back with the diagnosis of Brachial Plexus Palsy - Erb's Palsy. Out the door I went. No other information. I thought, well at least it was not broken!

Then I got on the Internet.

Yesterday was Justin's 1 year old birthday.

On Monday of this week I went to my first appointment at a therapist with Justin and this morning I go back to pick up a "restrainer". They want to restrain his left arm to make his right arm more active.

My question is, I know I have spoke via email and phone to a couple of other moms and everyone says to find a specialist to look at him first. Should I not restrain his arm? My insurance only pays for in state treatment. Should I try the Shriners Hospital like some of you have? Justin can move his arm, lift it over his head, use his fingers, grasp using the thumb and index (immaturely is how they labled it). They want me to see a neurologist here in town? They pobably aren't a specialist but due to his use of the arm how likely am I to get him out of state help? I have my mom looking into having him seen at The University of Kentucky Pediatric Neurologist department.

I also have his one year checkup at his pedatrician for shots today. That should be interesting!

Sandra
welcome to the boards, sorry to hear about Justin's recent diagnosis.
I live in the UK so I don't know much about how your health care service works and I realise that many parents have trouble getting referrals to differentm states for treatment, but I do know and everyone here will tell you the same, it's important for Justin that he is seen by a specialist in brachial plexus injuries.
If you can try and press for that, you will find the answers to your questions, about Justin abd how best to help him.
I wish you both well in your quest and I know that the many families in the US will offer their advice here, you have found a great place for information here lol
best wishes
Karen

Hi Sandra - glad you made it to the message board. I was having trouble with your email bouncing - so I'm glad it worked out that you were able to get it anyway. Good luck!
-francine

Sandra, glad to hear from you! I'm sorry to hear about the lack of quality diagnosis for your son. I'm sure what you'll hear from many is to seek out expert advice. It seems like many on this board use either TCH or Shriners. I'm not familiar at all with TCH but can give you any info you'd like on Shriners.

Thank You All for your posts!

I feel better after today. The "restraint" was just a temporary splint. It did not bother him one bit. In fact, after about 2 min he had figured out to go about his doings still using the arm that was supposed to be restraint. I was told to have him use it 1 hour a day. I don't anticipate it helping all too much.
We have started "high fives" with him and at the pedatrician visit, his doctor wanted him to open his fist to see his palms and he gave a high five What a smart cookie!
We also have the giant exercise ball and my hunsband built him a ramp tonight for crawling up and down to try to strenghten his little arm.
My OT pulled out all sorts of materials for me to review, all publications from this website!
Also, a mom from my area emailed me (I found her email here as well) and she had a positive surgery experience from the dr I was first sent to.

This website is such a fantastic resource! Thank you again and again!!!

Sandra,
Hi I'm mom to Melanie (3) and Matthew (19.5 months) both right bpi.

Happy Birthday to Justin.

Matthew sees a neurologist who runs a bpi clinic as well as the docs from TCH. We have him involved in a few other treatments such as acupuncture, chiropractic, and Reiki energy. If you ever want to hear about any of our experiences please feel free to email me.

We at times restrain Matthew's arm to try and remind him that his other arm is there. Opinions on this vary, in the end you need to do what you feel is right.

Cindy

just a thought, with Michael we gave him 2 of everything, it might help, 2 spoons, 2 cookies etc...
They said, he would try to use both rather than put one down, it helped sometimes, other times we would give him things in only the affected hand. we did alot of, putting things in the bucket with just the affected hand. 2 handed pat a cake games..
just a thought
good luck

When my son was little I would tease my husband about how cheap it would be to feed my son because he wouldn't want two of everything...you know, one for both hand. I too as he got older though gave him one in both hand and actually it was more expensive since he always seemed to drop the one in his affected hand....ha, ha, but eventually he learned the other one was there and put it to his mouth to eat it.

I have always tried to give Justin two of each, because I have thought for a while he needed to use that hand more. He will look over at the affected hand (right) and his eyes will light up and then he will drop whatever was in the left so that he can transfer.
Today, I put a mitten over his left hand with the "restrainer", so that those little fingers couldn't cheat. He gave me a not so nice look but then he was off and running and he really did OK. He could put things in his mouth he could pull up, with a little more effort and very shaky, The only thing that made him made in the two hours was drinking from a sippy cup. He could not do that. He also had a harde time putting on a hat. It is like he can pick things up but he can't manipultate them once they are in mid air. I was so proud of him! What a tropper! I am sure tomorrow when he sees me coming with the sling he won't be so agreeing!