United Brachial Plexus Network, Inc.

My wife are in Texas waiting to get permission to go back to NJ. We adopted Alex 3 days ago, he is 9 days old.
We just took him for a check up with a wonderful local peditrician. He found a knot on Alex's collerbone and noticed not as good range of motion in his left arm.
Any suggestions, he told us he may need PT in 6 weeks.
That seems like an eternity away.
Alexdad

Congratulations on your new baby.
If you are not confortable with the doctors decision about waiting 6 weeks for PT... check out the specialists in Texas. There are a few bpi specialists.
If the baby has Erb's Palsy Range of Motion should be started as soon as possible. Speak to the doctor about instructions on how to do it.
I am an adult with OBPI/Erb's I live in NY.
Kath

Congratulations on your new baby, and I am so sorry to hear he is injured.

Kath is right - Texas is a great place to be for doctors who specialize in brachial plexus injury treatment.

We live in Texas and take our son (left Erb's) to Dr. Rahul Nath in Houston. He's outstanding, and a large number of his patients travel from out of state and the country to see him. His website is www.drnathbrachialplexus.com. If you're anywhere near
Houston, I highly recommend him.

I definitely wouldn't wait six weeks or trust a pediatrician or therapist as the last word in treatment. Take Alex to a BPI specialist ASAP. You have the best chance of the most successful treatment for him if you have him seen as an infant.

All the best to you,
Janet

I don't know where in Texas you are, but I live in San Antonio. My son goes to the Brachial Plexus Specialty Clinic at Methodist Children's Hospital and we love the docs there. There are 2 who see the kids together monthly: one physical med & rehab pediatric specialist, and a plastic & reconstructive surgeon who is also a hand surgeon. If you are near Houston, there are lots of docs familiar with BPI, and Dallas has a few as well.

My son had a coraco-acromial joint separation so we waited 2 weeks to start ROM of the shoulder, but started with the hand and elbow right away. I'd ask why the long wait... you don't want your baby to develop contractures.

Forgot something...

The knot on or just above the clavicle could be either a neuroma (bundle of nerve scar tissue felt in the soft spot right over the bone, and sometimes tender) or a lump from a healing fracture of the bone itself. Babies with clavicle fractures (which are a lot more common than BPI) will often have a "pseudoparalysis" where their bodies just sort of shut down that arm due to pain. It can look a lot like a brachial plexus injury but the clavicle will show a fracture on X-ray and the movement begins to come back a lot more quickly as the bone heals and the pain goes away. A clavicle fracture without nerve damage will heal fine and there is rarely any remaining deficit.

No way it's a palpable neuroma at 9 days old. The nerves don't heal that fast. Sounds like a broken collarbone which is healing, but that doesn't rule out BPI as well. Get it checked out. At the least, an x-ray sounds in order. A broken collarbone can also impede motion, either because it hurts or it isn't healing right.

Kate

Congratulations on your new baby boy! Since you are in TX, it would be great if you were able to see Dr. Nath in Houston. He's a well known BPI expert. He would definitely be able to clarify your diagnosis and give you better direction. I see that you live in NJ. Well, coincidentally, Dr. Nath has does a satellite clinic in Morristown, NJ. About 4x/year, he goes to the office of Dr. Trevor DeSouza, Pediatric Neurologist, and they do a BP clinic together. So, if you don't get to see Dr. Nath before you go home, perhaps you can see Dr. DeSouza in the meantime. If it is a BPI, then you might also make plans to attend Dr. Nath's next clinic there. If you go to the BPI Events message board at this site, you can get more info. I think the next visit is scheduled for August 30-31. There's also contact info. there.

Whatever you do, I'd definitely get another opinion about waiting 6 weeks to start PT. If it is a BPI or anything else that might require PT, 6 weeks would be a long time to wait. I don't know if there was a particular reason the dr. would say to wait that long though. It sounds like you're doing a great job by researching and questioning the dr. Many people just take doctors words for everything.

BTW, when you adopt a baby, do you get a copy of the birth records? If you can get that, it could be very helpful info. in determining the cause of the knot on Alex's collarbone and any other possible accompanying problems.

Enjoy your new sweet boy!

~Tina, bpmom@comcast.net (Mom to Nicole, 6 y.o. w/LBPI & Joshua, 1 y.o. c-section)

Javier had a lump on his lower neck/ collar bone. It was tested(scanned) at a few days old. It was swelling from the injury. After it went down, in moved the torticollis (which went away after a few months with stretching).

Marlyn

Marlyn,

Was Javier's lump a torn sternocleidomastoid muscle? Does that sound familiar? The healing of that muscle (it shortens as it heals) is a frequent cause of torticollis. I was just wondering, because this is what Joshua had. He responded very well to stretching, too.

Kate

I have just recently felt a lump on Daniel's arm, and I'm wondering if it could be neuroma. I hope it isn't contraction, and I really don't think it can be; we do ROM every day as well as many other exercises. Oh well, we'll find out soon.