1 yr old daughter w/ obpi - need help

[terri0320]

Hi, my name is Terri. My daughter, TeNeisha, was diagnosed with BP occuring during the delivery. She is now 14 months old. She has been seeing a PT and on OT since she was 3 weeks old. My husband and I have taken her to so many appoint. for the EMG and other tests. The EMG test is the worst for us. I cannot hardly stand to sit there and listen to her scream while they poke her continuoulsy with their needle. The last time we went, the doc said that her nerves were fine, but she is still not using her shoulder or her elbow. Is it really necessary to keep having the EMG done? Also, I have read the recovery timeline on this website and some other sites. TeNeisha is still not bending her elbow (bringing hand to mouth etc.)and only raises her shoulder to a 90 degree and does not rotate it at all. According to what I have read so far, the docs should have said something about the possibility of surgery at some point, but they haven't. Should I be concerned? Her bicep muscle is like a rock and has been since about 2-3 months of age. Any info on this matter would be appreciated. Thank you in advance. Terri

[thetylers]

I recommend that you get a 2nd opinion, as what you describe sounds like a candidate for a primary surgery. In our son's case we were told that by 4 to 6 months if no bending elbow / antigravity movement when sitting up and hand to mouth, then surgery is strongly recommended. This came from both Dr. Waters in Boston (my son's doctor) and from Dr. Nath at Texas Childrens. Turns out Jason started bending his elbow at 3 months and by 4 months was doing hand to mouth so we've jumped the 1st of many hurdles.

From what I've read the window of opportunity for primary surgery is up to 18 months then it is not viable, but a BPI specialist can tell you for sure.

Look here for lists of doctors / clinics:
http://www.nbpepa.org/special.htm
http://ubpn.org/weblinks/index.php? ... tal/Doctor

Steve T.

[terri0320]

Thanks for the info. I seem to be having problems trying to find another dr in my area that deals with bpi. I am in Indiana south of Indianapolis. The closest one I have been able to find is out of Cincinnati OH, which is about an hour from us. Any suggestions on where to go that might help?

[Karen Hillyer]

Terri
Your daughter sounds like our son did at age 6 months, he couldn't bend his elbow so he had a nerve graft at 6 months of age.
Over here in the Uk the usual indicators for surgery are an inability to bed the elbow at three months and then a re-eval at 4 months then surgery is scheduled.
usually over here a child would only have 1 EMG - I have no idea why you would keep repeating them so often.
I agree that you should seek a second opinion. do check out the medical resources page on ubpn and also post on the general message boards where most parents go to post, I KNOW you will have lots of responses then
Good luck
Karen

[hope16]

I would strongly recomend that you get an appointment at a shriners soon and travel what ever distance that you have to to get help asap. The sooner a surgery is done the better your childs chances. My doctor waited until I was five so my chances were greatly reduced. Now I have to live with that. Hope you can get help. Amy

[ubpncathy]

Terri,
UBPN has a Medical Resource Directory on its website: ubpn.org. You may wish to consult with the directory for assistance. All the best, Cathy

[angela d]

I'm from cincinnati and my 2 year old son goes to childrens hospital here.They have a brachial plexus clinic within the hospital,and it's not just one doctor it's a whole team that examines your child.Also i'm no doctor but i do not understand why they keep having to do emg's.Unfortunatly you already know that the nerve is damage and no change has occured in recovery.I would definetly get another opinion.

[latissiat]

Hi, I think it would be very wise to seek a second opinion about your child's injury. My daughter was also born with a brachial plexus injury. She is now 4 years old. She had nerve graft surgery at Texas Children's Hospital when she was 5 months old. Her range of motion has increased dramatically. The doctors at Texas Children's are great. She has been in OT since she was 8 days old. She will never have 100% movement but she has adapted just fine. She's very active and can do anything that other kids do. My advice to you is to never give up seeking help for your child. Do what you have to do and go where you need to go to make things better for her.

[admin]

I am a resident of Indianapolis, Indiana. My Baby was diagnosis with brachial plexus immediately after birth. We were referred to Dr. Mih at Riley Hospital. Dr. Mih performed surgery at 20 months and the surgery was a success. My baby have more arm functional now, then before the surgery. I have been very pleased with Dr. Mih decisions.

[admin]

how do we know if we would need a second opinion for our daughter? She is 2 months old and has had bpi a/k/a Erbs Palsy since birth. We are seeing a specialist at NEMC in Boston. We think they have a great group of neurologists. I could be wrong because this is our first experience. If you have any recommendations, please feel free to respond.