United Brachial Plexus Network, Inc.

I'm a mom with a BPI infant, and I've been searching for a lawyer/doctor neutral simple description of BPI for our family and friends, and came across this website:

http://www.ecureme.com/emyhealth/Pediat ... _Palsy.asp

After stating

"Specialized therapy is not usually required, although the arm is usually placed in a sling for several weeks to prevent further stretching of the affected nerves."

it goes on to say:

"Over 90% of infants with Erb's palsy will recover completely after several months.

The few babies with residual problems usually have only minor difficulties with activities that require them to lift their hands above their heads, such as combing hair. As they get older, most can be taught to compensate for this difficulty."

I thought that some of you living with these so-called "minor difficulties" would like to write to this website and straighten them out!!

Kate

I sent them a letter this morning. I cannot believe the poor information on this site.

GOOD GRIEF - what a truly poor and (IMO) dangerous site this is - the mis-information it contains could easilly lull parents into a flase sense of security about their child injury and prevent them from seeking a specialist opinion.
I have e mailed them a VERY strong message - I urge ALL parents on this board to do the same - it may just make them look again at the quality of information they have provided for people seeking advice.

I would like to thank you Kate for posting this message. This website poor information is so outdated and it could cause not only parents with injured newborns but also adult/obpi seeking help and information to just give up and not find the support and medical help they also need.
Kath

Unbelievable, yet also not terribly surprising. Just so much misinformation out there. I am tired so I apologize for asking this question but I am not sure who you are sending the email to. I just didn't see a contact, but maybe I looked right over it.

Wow I am totally dumfounded by the crude and misleading information that people actually put out there. I am so enraged. I also wrote them a letter. I hope you all were a little nicer than I was. Hopefully they get it corrected before some poor innocent childs' parents read that and are misled. Thanx for the hot tip Kate. I think we might have gotten to them.
Brian

Unbelieveable!!!! I too have written. Hard to believe this kind of misinformation is out there.

(There is a contact us area at the bottom of thier page)

I visited this site and was appalled! I've written to them providing current information and requesting that they either update their information or remove themselves from circulation!

Tanya in NY

Just an update. I received the following e-mail from this website today in response to my e-mail about their website's misinformtion.

"Thank you for your email. We strive to put accurate information on our website; however, some errors do occur. I have forwarded your email to our
specialists and we will make the necessary changes as soon as possiblie.

Once again, thank you for your concern.

Su Park
Director
909 South Gramercy Place
Los Angeles, CA 90019
(323) 386-6097 Direct
(323) 731-9200 Main
(323) 373-1860 Facsimile
su@ecureme.com email"

Hopefully, they are being honest in their statement of making changes to this website.

Tanya in NY

Perhaps we need to suggest that they REMOVE the link until their so-called "specialists" get a clue??

Kate