Glad to have found UBPN

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Posts: 8
Joined: Thu Apr 24, 2014 12:34 pm

Glad to have found UBPN

Post by finnsgma » Tue Apr 29, 2014 8:38 pm

I am Lisa, grandmother to Finnley. She was born in February with a broken collar bone, then a week later diagnosed with Erb's Palsy. She is rolling her shoulder and has a great finger grip, but no elbow bending on her own. We have been told by our local pediatric surgeon to "wait and see, most will recover on their own." I didn't like this so I began to do my own research. Had the AEA come in at 6 weeks and evaluate her. We started therapy soon after. At 2 months of age we video taped her and sent them to clinics across the country to get other opinions before we traveled, or "waited to see" too long. We got several replies back that she should be evaluated in person, so we are headed to Cincinnati Children's hospital the end of May. It's been an overwhelming couple of months. Glad to be here and getting the support all ready offered by the group.


Re: Glad to have found UBPN

Post by diver » Wed Apr 30, 2014 6:07 am

I am glad you wrote :shock:
My arm is bent at the elbow from my birth erbs of the 50s.
My elbow and scapula were broken by forceps :evil: :|
I never had surgery, but when I was little my mom made sure I got theory for my erbs.
I dont understand wait and see and the fact that some repairs need to be in time.
What I have read by so many post , that wait and see really is no answer and in turn start the quest to find a new doctor that can help these injury. I learned tenacity by how my mom tryed to get help for my erbs ;)
I have live with this bent arm all my life and would be the first thing I would of got fix. The bent arm does not help , People seem to notice it more. When I was little I got tease because of it :evil: :twisted: When I got older it id not matter anymore :shock:
Wait and see ???? Get the bend out of the arm , Doc :shock: work on getting grasp and get all the therapy as you can to increase usage in the erbs arm over time while your quest to find the next best doctor to help over time.
Just Thinking, Like I was a baby again with birth erbs :roll:
Hope this might help? :roll:

Jennifer P
Posts: 220
Joined: Wed Sep 09, 2009 7:12 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
Location: Pacific Northwest

Re: Glad to have found UBPN

Post by Jennifer P » Wed Apr 30, 2014 1:44 pm

Hi Lisa, glad you found us! It sounds like you are doing the right thing by being active and sending the video around to hospitals rather than waiting to see if Finnley's arm improves on its own. I was injured in 1983 and even then they were telling parents to "wait and see."

The forums also have a chatroom feature. We will be chatting online tonight at 5:30pm PST. Join us if you'd like!

Posts: 113
Joined: Mon Oct 08, 2012 10:41 am
Injury Description, Date, extent, surgical intervention etc: OBPI

Re: Glad to have found UBPN

Post by ASC » Fri May 02, 2014 7:26 am

Sometimes the doctors are apprehensive to make an Erb's Palsy determination. No one wishes to take the responsibility. So, the child goes through the "wait and see" process without support. I know this, because I am one of the babies!

Lisa. Do not give up hope. And, do not wait for the doctors...Advocate for the child. Get the supports in place. Being part of UPBN is a positive network of people with BPI. As a group, we fully understand the trials and tribulations of Erb's

Personally, I was birthed my pulling on my right arm to free my shoulders. Thus, causing Erb's Palsy and other issues. At 6 to 8 years of age, I underwent a forearm rotation surgery (this is the 1960's), which enabled me to utilize my right arm and shoulder. To this day, I continue to stretch and exercise the limb. I have pretty good strength in my hand and arm. My shoulder is intact, however, I have arthritis in the shoulder. Don't fret. I live a life the best way I can. One, a positive attitude. Two, learn, learn, learn. Three, advocate. Four, SMILE!

Last edited by ASC on Fri May 30, 2014 8:46 pm, edited 1 time in total.


Re: Glad to have found UBPN

Post by diver » Fri May 02, 2014 8:00 am

I sure learn a lot here :shock: being in Aw on what can be done ;) What Sucks is finding out about what could of been done for my erbs , if only one doctor offered a direction. :shock: :evil: :twisted:
Many of us found this sight without help or hope for are limitation :shock:
Today , the choice are many the quest to find a doctor in time ?? :roll: I will Never Ever understand the word , wait and see??
Scare tissue pulls nerves to.
Welcome to the crew :shock: ;) :D
There is a vast ocean of help :shock: :D

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