United Brachial Plexus Network, Inc.

Lesley went for her 2nd appointment with her Specialist-Dr. Rinaldi, today, he told us that she has improved but not to the extent that he would like to see her, she also has torticolis, her neck muscles are tight and she also has knot in it, he gave her a prescription to go back to Occupational Therapy and that was the end of that. I feel as though there are other things that are going on with Lesley' BPI arm that I am not being told about, I also told the Dr. that I did not understand what all that he was saying and he did not even try to explain any of it to me, I guess what I am trying to say is, I feel that I am being left in the dark about the Injury to her Right arm or not getting the information that I should be getting. I told the nurse when she came in about all the concerns I had, they were, her not being able to turn her head to the right as well as she can to the left, the popping noises in her neck and shoulder, a lumb in the back on her spine below her neck, the fact that she has learned how to scoot, she goes so far and does not have the strength to pull her BPI arm out from under her, she still has the waiters tip going on, her elbow stays bent to a degree and last that she stills holds her arm with her palm out. I just do not feel as though he answered my questions, all he did was look at her, tell the OT and the nurse what he thought and then looked at me and asked if I had an concerns, I said I already told the nurse my concerns, he said okay, see you in about another 3 mos. and he left the room. I just do not really feel comfortable with this Specialist because I feel as though he does not explain anything to me. Well thanks for listening, if anyone has any suggestions or advice, it would greatly be appreciated. Lesley Jane' Mom (Danielle) P.S. Does anyone have any suggestions on whether or not I should send Lesley to a babysitter or should I stay home with her?

Danielle,

I am e-mailing you!

Nancy

Do you live in Arizona? We have a doctor by that name here. Just curious.

Bridget

can you take her somewhere for a scond opinion? Doesnt even HAVE to be a BPI specialist,I would think even a chiropractyor might be able to at least offer you some info-
I would be curious about the bump but I suppose it could be anything, I mean prolly something you definately want to know about tho-
popping sounds are hard calls because so many kids get them, they mean lots of different stuff- I remember when Max got them people told nme all the stuff they could mean and I was like OH NOOOOOOO but they went away gradually within maybe...6 mos so- with him it was nothing, on the other hand who knows-
hang in there, read and ask, keep asking then talk about it till youre comfortable with all of it atleast
hang in there!

Just wanted to say I know how you feel we took Thomas to a doctor he spent all his time talking to the interns than me. I spoke up and said HELLO I am in the room to I also want to know what going on. He just keep asking them question about the injuries and getting their answers so I butted in and told them some answer of my own. Thomas had torticolis and it did no really go away till after primary surgery. But I also took him to a chiropractor it helped also. If you do make sure they know about his bpi. Good luck just don't let them forget your in the room to don't tell the nurse your question save them for him and make him answer them. But I have also found out that their is so much you can learn on the internet. Just read and research and educate yourself so you will be on top of what they are saying. I find at time I know more than some of the doctors or therapist.
Best of luck .... c

I would suggest you see another bpi specialist. You sound disastisfied with this doctor's bedside manner and his assessment of your daughter's injury. The least a doctor can do is answer your questions and explain the injury in terms you can understand. Did Dr. Rinaldi explain a timeline for recovery...and how crucial it is certain muscles regain function by certain timeframes or it could indicate a severe and/or permanent injury? What state are you in? Perhaps someone here can recommend another bpi specialist that will be more proactive.

I would suggest you see another bpi specialist. You sound disastisfied with this doctor's bedside manner and his assessment of your daughter's injury. The least a doctor can do is answer your questions and explain the injury in terms you can understand. Did Dr. Rinaldi explain a timeline for recovery...and how crucial it is certain muscles regain function by certain timeframes or it could indicate a severe and/or permanent injury? What state are you in? Perhaps someone here can recommend another bpi specialist that will be more proactive.