United Brachial Plexus Network, Inc.

Hi...my son Josh has a left obstetrical BPI, sustained 12.5 years ago. He had both nerve grafting surgery and Mod Quad surgery at Texas Children's with Drs Nath and Laurent. He has a very active life, plays tennis, etc. Recently, he has been complaining of pain in his diaphragm upon exertion, such as running. The other day, he ran 1.5 miles with me, and said it was hurting really badly. I am prone to think it might be dehydration, as I can get pain there when exercising if I am not hydrated. However....I know that some of the BP nerves innervate the diaphragm area (?right?) so am wondering if there may be a link. Anyone who can shed some light on this? Thanks!

Brittany is 13 and has a partially paralyzed lung and diaphram on the right side. She is right OBPI. She does experience pain if she runs a lot, or dances a lot. When she starts breathing rapidly for a period of time, that is when the pain starts. Her lung and diaphram just can't move the air.

FYI, Kathleen Mallozzi and 2 or 3 other adults have post about diaphram issues. Click on her namein BLUE on one of her posts in "General Message Forum" AND also the "Adults & Teens With OBPI Message Forums" and then type "Diaphragm"
in the "Search Forum Box and the posts on this subject should come up for you. This can be a medical "Secondary OBPI Injury .
Carolyn J
LOBPI/72+++

we've known about maia's issues since about age 3 when it just became apparent (with more activities) that she wasn't breathing well -- and she got really tired out -- and she had spider veins coming to the surface on that side of her face. It also became apparent that what I thought were growth spurts (when her arm didn't move at all) that they actually were not growth spurts -- but they were period when she wasn't breathing well at all. It seems that as soon as she is low oxygen, her arm just can't move.

They placed her on massive doses of steroids and other meds and we really thought at times that we would lose her - it didn't look good - what a scary time.

Maia is almost 13 now and I can say that the best thing she's had in life for this particular problem is her singing. I got her into a children's singing class very early on, then she joined the synagogue choir (with singing 2 x a week), then she joined a rock and roll chorus, and a small group choir, and now she has private voice lessons as well (where they do breathing and voice exercises). All of this singing has made the most incredible difference in her ability to breath. Within 1 year of the start, she was off the steroids and the other meds.... since then she has used albuterol (literally) 2-3 times (meaning 2-3 times that she's picked up the inhaler) each year.

Early on I had her blowing into different whistles. I got her blow pens and she did a LOT of coloring with that.... blowing bubbles, blowing candles out -- inhaling aromatherapy --- the list goes on -- you just think of all of these things when you have to.

I treated this just like what we did with her arm -- we did PT and Ot with her arm -- so we had all kinds of breathing and singing opportunities for her diaphragm.

Now, I am looking into those diaphragm exercisers that they use for swimmers, etc. - devices that you blow into - they come in different strengths, etc. These are kind of like the exercisers they use after you have a surgery, where you inhale to make the ball rise to a certain level.

by the way -- I'm saying "blow" but it's not just about blowing - it's about the quality of the inhale, too - so don't take me literally ok?

so if your child is not into the choir/chorus "thing" -- there are voice teachers who teach all the diaphragmatic breathing and exercises
and there are bodywork therapist - yoga teacher, etc. who also teach 'breathwork"

it works!!
-fran

My son, Jeremy, age 12, had a diaphram plication surgery at 10 months of age. (the phrenic nerve had been injured at birth, along with other nerves). The plication "sews" down the diaphram. Have they ever did one of those "moving" xrays on your childs diaphram area? just a thought. They found out about his injury to the phrenic nerve when he had pneumonia, and his lung collapsed. After he recovered from pneumonia, we scheduled the diaphram surgery. He doesn't seem to have problems with his breathing, however, I believe I will be asking his PT about the blowing therapy. I had never heard of it, which is surprising since Jeremy has been in PT since he was 10 days old, and has had OT off and on since he was 9 months old. Thanks for sharing the information on breathing exercises!
I haven't been on the board in a long time. It's good to be back.

Welcome back, Peggiesue! Please come back here more often to share or just comment. I learn something from everyone.
Huggz,
"gramma" Carolyn J
LOBPI/73+