United Brachial Plexus Network, Inc.

I was wondering what happens during the Dr. evaluations at the picnics? I emailed Claudia to see how the plans were coming for the NY picnic. She told us to shoot a video of our daughter and Dr. Nath will sit down to review the video with us. I assume this means that he will not be performing an "in-person" evaluation. My whole point of taking my daughter to the picnic was so they could see her in person and make sure we didn't miss shooting something on video. Plus I wanted to have him check her mod quad incision because I think there are still sutures in there (almost 6 months later!)and see if they think she still needs an elbow extension splint because our PT said that she does not have a contracture. (TCH recommended the elbow extension splint based on the VIDEO we sent in June.) I personally feel better with a face-to-face evaluation, but it is not feasible to fly to TCH every so many months so that is why I was happy when the NY picnic was set up. I was just wondering what has taken place at the other picnics?

Just to let you know, there will not be "in person" evaluations at any picnics this year. The Chicago picnic will also be using video. The docs at tch are well aware of how much we like to be able to go to the picnics and meet people and get evals for our kids. What most people don't know, is how much the team from tch loves to come to the picnics. They are incredibly disappointed in the turn of events that has led us to this change. As the coordinator of the NY picnic, I had many conversations with tch over how we could best serve the families. Florida and San Diego used the same concept that we are: a lecture by Dr. Nath and the ability to watch with him a video of your child. The response from those picnics were very favorable. Perhaps it is not what all of us had in mind (okay, it is definately not what I had in mind) 4 months ago when I announced the picnic. And it isn't what any coordinator had in mind, and it isn't what tch had in mind. But we will still have a great time and exchange ideas and help each other.
The most incredible thing about having a bpi child and landing in this community, by chance, is how wonderful the people are. We help each other in ways that I don't think others do. And that is the real reason for the picnics. They are an opportunity for us to help each other.
So, come to the NY Picnic (or any other)and bring your video of your child and bring (to NY) your therapy ideas, so we can put them in our "Therapy Book" and we can share them! And I know we will all have a great time!!
For those of you coming to NY- I'll see you there!
claudia

Hi, Claudia. I'm looking forward to going to the picnic. I am, of course, disappointed to read about the new eval setup at the picnic. I guess this means that we'll have to come up with $ to go to TX for in-person evals soon. I hope that those responsible feel good about the outcome b/c there sure are a lot of others who will be disappointed and in difficult financial situations having to travel to TX more frequently. I was wondering how Dr. Nath will view the video. We have a camcorder with a mini screen that he can watch, but this is really tiny and hard to see. If this is going to be the case, then I think sending in a video would be more meaningful. Is there going to be some kind of a TV monitor set up? I understand if that's not possible, but am just wondering. If so, are there jacks to link up a handheld camcorder or will we have to convert to VHS tapes. Are there still going to be appointments? I haven't gotten any info. from you yet, BTW. Did you mail the info. already? Thanks. -Tina

Hi,
I was hoping someone could explain why this change has been made? Have there been liability issues? This is so unfortunate; we are still planning to attend the Chicago picnic,but we are obviously very dissapointed, as we were hoping not to have to fly back to Texas for another evaluation. But I want to be sure I understand why the tch docs can no longer do personal evaluations, so I can explain to my son's PT and OT who were planning on attending the picnic with me. Just want to be sure everyone goes in with the proper expectations! Thanks for any explanations.

Regards,
Cathy

Free airfare is available for travel to TCH. I have the list here: http://www.injurednewborn.com/maia/travel.html. We have actually gone to TCH just for an emg - it was a one day thing and worked out well. Our insurance company had no problem with it because Maia needed follow up care and the words "continuity of care" make that happen.

TCH has given so much to us, we need to be grateful for what we have received and allow for flexibility as things shift (as unfortunate as that is in truth).

An evaluation at a picnic, either in person or by video is only scratching the surface-a bpi specialist would normally carry out a physical evaluation lasting about an hour and would not make any decisions on surgery until diagnostic tests like MRI and EMG are carried out. A picnic evaluation would only give an indication to the doctors and parents, it could never replace a proper examination. I too am sorry if they aren't doing it any more, but would only ever have taken such an examination as an indication, not a basis for important decisions. Just my 2 cents.

CathyY - The doctors need to have licenses in each state. They have gotten them in the past but they are only temporary. Sometimes the paperwork happens and sometimes it doesn't happen that fast - it's different in each state. Until this paperwork gets straightened out they will be able to meet with you and your husband but they won't be seeing your child. The timing is something that is really out of their control.

Tina- Because the view on your video recorder is usually so small, I'd say that you should transfer it at home to VHS and just bring that tape.

Thanks, Francine.One more questions,(and sorry to be dense) but does this mean that Matthew can't even be present when my husband and I speak with Dr. Nath and watch the video tape? Or just that Dr. Nath won't be able to touch /range his shoulder for an offical "evaluation"? Just trying to wrap my brain around how to get the most out of the visit given this new direction. Thanks again,
Regards-
Cathy

Cathy - that's correct. Children cannot be present at that time. Might I suggest that you team up with another family and watch each other's kids when it comes time to speak with the doctor.

OK, now I have heard something different... I was told just last night that your child COULD be present and that you could do ROM to Nath but that he could not physically touch your child. And that you could have a discussion on what your child could/could not do and get a opinion on what the next step for your child may be. If this is different, this changes everything for us...