United Brachial Plexus Network, Inc.

Hi, I'm so glad to have found this board. My son is almost a year old (next month) and at four months was diagnosed with Erb's Palsy. (he was a Shoulder Dystocia baby and my second child) His Neurologist says his nerves are just stretched. However, he has respritory problems along with low tone in his affected arm, and facial muscles (he doesn't close his mouth and drools very excessively). We just recently had a swallow study done where it was confirmed he has been aspirating on liquids. I need to know if anyone has had any similar problems. He still holds his hand in a slight "waiter's tip".

Dear Mom

What type of tests have they done on the baby?

Please check out the Resource Page
http://ubpn.org/awareness/index.html

Are you doing Range of Motion exercises?

I know this seems like a great deal of questions but it is important to have a doctor who specializes in Erb's Palsy --- OBPI... Most Ped. doctors have little to no experience with treating this injury...

Most of the Parents on the General Board... can answer any of the technicial questions you have... since they have small children and babies with this injury...

Let us know how you are doing and welcome to the board.

I have right OBPI and Horner's syndrome... part of my face is effected and one smaller eye and slight droop to the eyelid... hardly noticable when I was young...

Your son needs to be evaluated by a specialist who is familiar with obpi some are listed on the resource pages here.
I hope this helps.
Kath

(I recieved your email too)

I think that the most important thing you can do for your child is to go to a brachial plexus specialist. Where are you located? If you tell us where you are from, there may be a brachial plexus specialist in your vicinity that we know of.

During the warm months the team from Texas Childrens Hospital travels the nation and visits with parents at support group gatherings. This would be a good way for your child to be looked at - usually by a team.

http://www.injurednewborn.com/gatherings/html - I have up just a couple so far... there are more planned for NY, Baltimore, Florida, etc.

You can also send a video tape to TCH and have them evaluate a tape if a gathering is too far off in time/distance. http://www.injurednewborn.com/maia/video.html
this is where to send the video and how to do it.

I'd also call down there and speak with Lisa Davis..I have their number on that page as well.

Has your son had therapy? I'm wondering he still has a waiter's tip - this is a problem where splinting usually takes care of this early on.

Maia does have some low tone issues with her jaw and has had some speech issues that seem to have resolved for now. But nothing as serious as what you are describing.

I wish you the best - hope you find some answers soon. Will you let us know?

Also - wednesday night is chat night - care to join us?
http://www.injurednewborn.com/chatroom.html

-francine

Thank you so much for your replies. The only test that's been done is the swallow study. I requested the neurologist do an EMG and/ or MRI and he told me that this was not necessary. I'm not sure if we are doing ROM, but, we do brushings (basically the brush looks like a vegitable brush) every 90 min. to try and stimulate the nerves. He is a left obpi with sensory and oral motor delays. I am in Indianapolis, IN. I had someone else tell me to get a video of him but, I don't have a camcorder or access to one. To look at Antonio he looks normal. OT, PT and myself know that the shoulder is leaning forward and he still holds the waiter's tip slightly. He plays patty cake and claps but does not hit the right hand with the left. He can put both hands together (in front of him) and touch his ears. The new OT has said something about a splint but didn't say for sure that she'd get one.

I'd love to join the chat, but I don't have a cpu at home. I use the one at work.

Oh, yeah I printed out the Who's Who and read all your posts last night!! I know that I am lucky Antonio did not get injured any worse. And I admire each and every one of you for your strenght.

I asked the peditrician if this was causing him any pain (which I KNOW it does) and he told me absolutly not, this is not a painful injury (he's NEVER called it an injury by the way) I also asked if he'd have any pain later in life and again he said no. ( I knew that SOB was lying!!! LOL) I think posting pictures is a great idea, I can't figure out how though.

ONE MORE QUESTION; Have any of you had any hemangomias? Just like to know if this is common. His is under his obp arm in the armpit (looks like a bruise and has a knot in it) the dermatologist says it's not common with the hemangomia but the surgeon we saw says that's what it's from. I am soooooooooo confused. Thanks again :>)

Well, I thought I replied earlier but it isn't showing up. I'll try again, I am in Indianapolis, IN and do not have acess to a camcorder or the $ to buy one. His waiter's tip is only noticeable to me, and the therapists. To look at him he looks normal. The only test that has been done is the swallow study back in late January, 02, I did request that the neurologist do an EMG and or a MRI but he told me his injury is so mild that he didn't need one. Now he has all these oral issues on top of the sensory issues which makes the oral motor therapy difficult since he doesn't like for his face to be touched. I'm not sure if we are doing ROM exercises but we have a brush (looks like a vegitable brush) that we use every 90min. to help stimulate the nerves. He is a left obpi with his shoulder slightly leaning forward. His ped. told me this is not a painful injury (he's never called it an "injury") and that he wouldn't have any problem as he gets older. Yes, I would greatly appreciate finding out about some specialist in INDY. He also has a cavernous hemangomia with a knot in it under his bpi arm. Hey Kath- you said that your face was not noticable when you were young?- when did it surface?
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I am scared that as he gets older we'll have more issues to deal with. (I am very blessed that he's in such good condition) and I admire all of you veterans for your strength and advise you are giving. I just need to know what to expect, and what avenues I need to take to insure he gets the best care possible. thanks for any help and/or contacts you guys (or should I say mostly gals)can give us.
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PS Beer and chocolate. Let me know when the cruise is on and I'll call the media!!!! LOL

Hi,

I agree with Francine and Kathleen, it is very important that you have a brachial plexus injury specialist evaluate your child as soon as possible so that you can get a better idea of exactly what you are dealing with.

If you do not have a video camera, perhaps your therapist might have access to one, it is good to videotape at therapy anyway, as the therapist can look for and capture all the relevant movements.

Please consider posting on the general message board, as that is where most parents of young children with this injury "hang out."

Best wishes,
Bridget

Mom...cares

I really have to wonder how mild the injury is with waiters tip and face involved.

When I said you could not notice it when I was young... I was talking teens and twenties.30's,40, not until I hit my mid 50's was it noticable again... I saw some baby pictures and you can see the eye is a bit smaller...

Please read all the resource pages....
Kath

I want to express my gratitude for all of your advise. I am in the process now of trying to get a new pediatrician/neurologist/dermatologist etc. It's frustrating not knowing and knowing that something needs to be done. Like I posted on another board, the ob that delivered Antonio is in the same clinic as the pediatrician and the pediatrician's father founded the clinic. I've seen two different neurologists (both of which took great pleasure in telling me that they have been long time golfing buddies with the pediatrician!!) Coincidence??!!????!!!

Crystal G.

You said in your first post," His Neurologist says his nerves are just stretched, " How does he know they are just stretched if they haven't done any tests??? I'd stop seeing that doctor and find a specialist...Maybe you need a new ped. too.
T.

I am checking into that. Unfortunately, I have insurance that limits where I can go. I've contacted my Service Coodinator for therapy and she's trying to help me get a referral to Riley Hosp. for Children here in Indy (not sure about there being a bpi specialist or not)that's about the closest I can find for help. She told me it could take up to two or three months to actually get in though.

I won't be able to post again until Monday... So everyone have a happy Passover!!!!

Crystal G.