Open to suggestion for pre-teen with increased symptoms
Open to suggestion for pre-teen with increased symptoms
My daughter was diagnosed with Erb's Palsy when born. She was released by the Texas Children's Hospital BP Clinic at 12 weeks of age. We returned for physical therapy at the age of 5 due to weakness and shoulder blade flaring. The specialist said she had some muscle atrophy, but was not bad enough for him to do anything. She is now 12, and we are seeing some increased signs & symptoms. Her shoulder is really dropping and her ROM (outward)on her affected arm seems to be decreasing. Has anyone had these types of issues or does anyone have a suggestion. Please understand that Nikki is a great athlete (softball, volleyball, and soccer) and we feel very blessed, but we are beginning to worry about the long term affects. Thanks.
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Open to suggestion for pre-teen with increased symptoms
When you say her shoulder is "dropping" it's possible that she is subluxed due to muscle weakness. A lot of us have this as an issue as we can't build up those muscles due to the permanent nerve damage.
Her ROM is decreasing, I would suggest you go see a BPI specialist if you are near one, and/or get her to a PT who can measure her ROM and strength so you know where you stand now and can keep track of it as she gets older.
Check in the medical resources to see if there are any MD's near you.
http://ubpn.org/medicalresources/us-bpi.html
It great that she is active, that is key!
I am 33 now, and was very active as a teen in swimming, figure skating and Ballet (I only stopped these activities 5 yrs ago). I have Erb's too, a Left Obstetric Brachial Plexus Injury (LOBPI), my shoulder is subluxed and my shoulder blade "wings". I have one surgery at age 14, a tendon transfer and many years of PT after that.
Marieke 33, LOBPI
Her ROM is decreasing, I would suggest you go see a BPI specialist if you are near one, and/or get her to a PT who can measure her ROM and strength so you know where you stand now and can keep track of it as she gets older.
Check in the medical resources to see if there are any MD's near you.
http://ubpn.org/medicalresources/us-bpi.html
It great that she is active, that is key!
I am 33 now, and was very active as a teen in swimming, figure skating and Ballet (I only stopped these activities 5 yrs ago). I have Erb's too, a Left Obstetric Brachial Plexus Injury (LOBPI), my shoulder is subluxed and my shoulder blade "wings". I have one surgery at age 14, a tendon transfer and many years of PT after that.
Marieke 33, LOBPI
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dtrusk
- Posts: 32
- Joined: Tue Nov 25, 2008 2:21 pm
- Injury Description, Date, extent, surgical intervention etc: My son, Tyler (15) has ROBPI. The nerves were stretched that affected C5,C6,& C7. He has full use of all fingers, but limited ROM. In 2009, he underwent Triangle Tilt surgery and repair for shoulder dislocation.
- Location: Missouri
Re: Open to suggestion for pre-teen with increased symptoms
We just returned from Houston after my son who is 14 just had triangle tilt surgery with Dr. Nath at the Texas Nerve & Paralysis Institute. We decided on the surgery because Tyler's shoulder had become severely dislocated--not from trauma, but just as a natural course of having OBPI and the shoulder socket not forming correctly. It is definitely worth seeing a specialist about whether it's in TX or PA. If you would like any contact information for Dr. Nath's office, just let me know and I'll be glad to send you the information we have. Good Luck!
Donna Trusk
Donna Trusk
Re: Open to suggestion for pre-teen with increased symptoms
Will consider seeing Dr. Nath. If I am not mistaken, we actually saw him when Nikki was a baby. It seems like he was working in conjuction with the BP clinic at Texas Children's Hospital. The thought of a surgery makes me want to cry, but we have always been very aggressive with this situation and certainly want to do what is best for her. Thank you for the info. I'll keep you posted.
Re: Open to suggestion for pre-teen with increased symptoms
Marieke,
When you says years of PT, was it all the time or at different points through out life? Where did they transfer the tendon from and to for you? Does your shoulder still wing? Nikki's is LOBPI also. She hasn't complained in the past about pain, but the new volleyball workouts may change that. Today was the first time she ever said that the overhead serves made her shoulder hurt. Sorry for all the question, but I'm a little worried. Thanks for the info.
When you says years of PT, was it all the time or at different points through out life? Where did they transfer the tendon from and to for you? Does your shoulder still wing? Nikki's is LOBPI also. She hasn't complained in the past about pain, but the new volleyball workouts may change that. Today was the first time she ever said that the overhead serves made her shoulder hurt. Sorry for all the question, but I'm a little worried. Thanks for the info.
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dtrusk
- Posts: 32
- Joined: Tue Nov 25, 2008 2:21 pm
- Injury Description, Date, extent, surgical intervention etc: My son, Tyler (15) has ROBPI. The nerves were stretched that affected C5,C6,& C7. He has full use of all fingers, but limited ROM. In 2009, he underwent Triangle Tilt surgery and repair for shoulder dislocation.
- Location: Missouri
Re: Open to suggestion for pre-teen with increased symptoms
You're right....Dr. Nath used to be with TCH until he started up his own clinic a few years ago. I believe he does most of his surgeries at Hermann Memorial Hospital now. I completely understand about wanting to cry thinking about your child having surgery....I would venture to say that most of the parents on here feel the same way. We have been very conservative as far as surgeries for my son, until his shoulder became dislocated and then we started checking into alternatives. Tyler's shoulder actually didn't dislocate until he was 13. Don't be afraid to get several opinions and research what your daughter's options are...you will find a ton of support out there no matter what you decide to do.
Donna
Donna
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Open to suggestion for pre-teen with increased symptoms
I had some PT as a baby (not a whole lot, back then they really didn't know much), and was kept active in swimming and kindergym classes.
At 14 I wanted my shoulder to be "better", whatever they thought they could do I was game! I had the lattissimus dorsi transfer. Ok, so a muscle has tendon-muscle belly-tendon, what they do is cut the tendon on one end and re-route it and re-attach. It now serves a new purpose. Instead of it now doing internal rotation it does external rotation (very simplistic way of describing it really).
I had PT intensely before surgery to get the muscles as strong as possible, and then had PT after surgery for 3.5 yrs. A first it was 3x a week, plus home program, then as the yrs progress it gets less and less and I did more at home or through activities again.
Marieke 33, LOBPI
At 14 I wanted my shoulder to be "better", whatever they thought they could do I was game! I had the lattissimus dorsi transfer. Ok, so a muscle has tendon-muscle belly-tendon, what they do is cut the tendon on one end and re-route it and re-attach. It now serves a new purpose. Instead of it now doing internal rotation it does external rotation (very simplistic way of describing it really).
I had PT intensely before surgery to get the muscles as strong as possible, and then had PT after surgery for 3.5 yrs. A first it was 3x a week, plus home program, then as the yrs progress it gets less and less and I did more at home or through activities again.
Marieke 33, LOBPI