United Brachial Plexus Network, Inc.

Hi All

This is a very interesting topic. Just like Kath I was cured of Erb's Palsy and unaware. Don't exactly know when it happened????
Neuro. told me in Feb. "Erb's was an OLD injury". His diagnosis was brachial plexopathy(would this be considered brachial plexus injury?). Now he is my "OLD neuro."

I never liked the name "erb's" either but whatever works to get treatment!!!

God Bless
Tracy

I have thoughts that follow inline with Nancy's. Actually, we were just awarded SSI benefits for Rain again. She had them in the past, but they were taken away due to her settlement. When we went through the hearing for SSI, I totally used the term Brachial Plexus Palsey. The sad thing about it though is that they really had a hard time any way that it was worded because their guidelines are so strict, and there is not much clear information regarding the impairment of one specific limb falling under the perameters that they have sent regarding disability. That definitely has to change. All that said the decision was in Rain's favor ultimately. I too have gotten a disablity placard for my car for her, which was much easier to get since they were totally clueless regarding her bpi, and based it solely on the request from her pediatrician. It will be a great day when everyone becomes educated regarding this injury (disabilty) and make the guidelines more concise. Sorry if I began to ramble.

DeShawn

I agree whatever term gets the help. I contact NJ EI and was told that Javier would not qualify qith Brachial Pexus Injury. So, a few of you here and the OT said to call back and use Erb's PAlsy and paralyzed.Well, just like that, EI is coming to the house today for his evaluation.

Personally, the term Erb's PAlsy scared me when I first heard it. Like Christy said, the first thing you think of when you hear Palsy is Cerebral. My mom thought that when JAvier was first born and I just about jumped down her throat. OF course I apologized. You all know how tightly your nerves are wound when our babies first begin their trek into the BPI world.

Marlyn
mom to Javier 1 w/ ROBPI or Right Erb's Palsy

How funny that you said that.When I was about to go home from the hospital the Pedi for Megan came in and told me that She had a mild case of Erb's Palsy. This was after I asked him, he didnt offer the info. By the way...the Pedi was the husband of the OB who delivered Megan! Go figure. Anyway, I freaked out and thought because he said Palsy, it meant a stroke of some kind. I waited till he walked out of the room of course, and then my husband ran after him to demand that he explain further. He laughed at me and tryed to tell my husband that all first time moms were emotional. So I guess I too have always had a hard time with Erb's Palsy.

Palsy will getyou further than injury. I had an injury to my knee when i hit my kitchen table this a.m. But my baby girl has brachial plexus palsy all her life no matter how many surgeries she has?

Makes you say HMMMMMMMMM?????????

And let's not forget Klumpke palsy which is what my daughter has. If I was to pronounce it over the phone, who know's what I'd get!!! hahaha.
I can't even spell it!!

I am with ya bv

I always preferred the term BPI b/c in Nicole's case (total BPI), EP doesn't accurately describe her injury and who on earth would know what I was talking about if I said that she had Klumpke's Palsy, not to mention saying that she has EP and KP. I guess I'd never though of saying that she has BPP and will keep that in mind for when the situation calls for it (someone not knowing what a BPI is). I don't know if there's anything substantial to using the term EP in a lawsuit being associated with more wins. If I'd heard that, I surely would've said palsy in our lawsuit (I know the complaint had both EP and KP listed anyway and we still lost so I guess in our case it didn't really matter).

One of the other reasons I've preferred the term BPI is b/c I feel that it lets people know that there's an injury involved and not a birth defect. Of course, it's also a good point that the term injury doesn't sound as serious or long-term as palsy does. So, who knows, I guess I'll probably still use BPI most of them time, but at times will use BPP when it would be more beneficial. Anyway, this was a good topic to raise.

~Tina

Catch 22 Tina . Doesnt this suck. But we got some incredible kids out of it!!

We certainly have many opinions on this topic and they are all civil. Yeah !!! Yes, Tina, using the words Erb's didn't get us a win either but I did read those statistics awhile back. Another thought---- like it or not, with the intelligence level of most Americans, cerebral palsy is something they are aware of and an association, incorrect or not, is made with ERb's Palsy. I guess what I am trying to say is people know that palsy is serious but, after this thread, I've decided that BPP might be best if I can explain what the brachial plexus is.I , personally, had never heard of it until this dreadful injury occured. Lou