Looking for support groups for Erb's Palsy

Sara - posted on 09/30/2009 ( 5 moms have responded )

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Hello, my daughter has Erb's Palsy. Looking for support groups.

5 Comments

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Lisa - posted on 01/06/2011

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My son is 19 days old today and was diagnosed with Erb's Palsy immediately after birth. He can not move his right arm, and it hangs limp. It's really scary and I worry for his future if he does not get better. He also has Phrenic Nerve damage that controls the diaphragm of his right lung. He spent a long time in the NICU because he could not maintain his oxygen level breathing with only one lung. I would also like to find a support group. I wish you and your daughter good luck.

Andrea - posted on 12/10/2010

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my daughter is a month old and has Erb's Palsy as well. she is enrolled in the early intervention program. My case manager told me she could "hook us up" with other families that have children with Erb's palsy for support if we wanted. Just an idea

Rose - posted on 02/16/2010

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My daughter was diagnosed with erbs palsey when she was still at the hospital. she had her first surgey at 5 mon. old. I know if I had someone to talk to it would have been alot less stressfull on my family. I had my church for support. You never stop needing support.

Lisa - posted on 10/20/2009

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http://www.erbspalsygroup.co.uk/.

That's a good website for general info and they do some events as well. There is also a kids website linked to it which can be good when they get a bit older.



My 10 month old daughter was diagnosed with Erb's Palsy at 3 months. She didn't have full use of her right arm. Very, very happily and surprisingly it became apparent she had only nerve 'stretching' and the connections were repairing themselves, and gradually she gained use of it. She still has a slight problem with her middle and ring finger on her right hand but I am so grateful that is all she has been left with.



I hope you find a local support group as well.



Lisa x

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