United Brachial Plexus Network, Inc.

What about the people that are flying to NY just for the evals? Shouldnt someone inform them of this new change. I wouldnt bother coming--save up and go directly to Texas. Wow this is a bit of a shock!!!

What's that saying about making lemonade? ( I never remember good sayings like this ). I think it's something about making lemonade out of lemons?

We're all in the same boat. The information just came to us - no one was withholding anything - this is not a conspiracy to make everyone crazy and this is just the way it has to be for now. Let's try and find the positive for now and be grateful for all that we have received to date.

About the tape - well how about showing every possible movement that your child can make that include their arms (without assistance)

(1) raising the arm straight up and reaching for a toy or something
(2) reaching for something crossing midline - left arm reaching to the right side crossing the chest and/or visa versa
(3) supination (palms up) and pronation (palms down)
(4) both arms out to the side like an airplane or like a bird flapping it's wings
(5) a short run and/or walk
(6) touching head, touching ears, peekaboo eyes, touching nose
(7) hiding something behind the head

I'm sure you'll probably think of more. The most important piece is to keep it short. You might want to do this with your therapist so the therapist can point out specific things that he/she might be curious or bothered about.

If there's a specific thing that bothers your child - a certain motion that cannot be obtained- get it on tape.

If the tape is a too high pressure thing to get done so quickly - just take your time and send it in to them and that way the whole team reviews it anyway.
(which personally I think is a good idea so that more than one person reviews it)

Michele,

I am Jewish and the jews are known for their books of rules. In one of the texts there is much written about the concept of "The Public Eye" (mar-eet eiyin). It states that even though you might not be doing a bad thing - someone may get a different idea just by the 'look' of it.

If the child is there, even if they are not being evaluated, someone may look at this and not be able to understand that an evaluation is not being performed. So rather than give anyone any false ideas - it's best to just not have the question occur in the first place. If the children are not in the area where Dr. Nath is, then there is no question about even the possibility of him doing an evaluation.

I guess I wanted to add one more thing... Maia has not come to the last three picnics I have attended.

At the last PA picnic, not only didn't I bring Maia but I put myself at the absolute end of the list. Dr. Shenaq sat with me and answered so many of my questions and really explained things. I told my friends that I really valued this time with him not only because he gave me the time but because I didn't have to chase after Maia and keep my eye on where she was while I was trying to take this in. I learned more in that session with him than I had ever learned.

The other piece was that I had the time to really circulate with the people who went there and I got a chance to really have some serious talks with some people and made some very good friendships.

I even went to the Ohio picnic alone this year as well. Same thing happened - I learned SO MUCH from the other families.

I'm NOT saying that kids shouldn't go to the picnics - because they are so much fun for them!..but I guess the message I want to give is that there is incredible value in just meeting others with this injury, comparing notes and just talking.

I guess my only concern on this one would be for the new parents that have never been and just happen to hear about it at the last minute--as we did our first picnic. Also, what about the families that don't have videos or access to one? I can really see where this would have been OK with our last picnic visit as the kid froze up and developed an attitude and wouldn't LET the Dr. touch her if he had wanted to. BUT then again I go back to the new parents, etc...I am failry intelligent but I am pretty sure that had we had our first visit like this I would not have had any idea what they were talking about, what to ask..I would have been in the dark. What the heck though, we stay so tired from all the therapies and stretchings and making sure this is being done and that being done this way that we are in the dark half the time.

I think once the parents experience this change of events it will be ok, just different. Too bad though the team can't watch the kids playing from a distance to see how they perform naturally.

kathleen and Nancy--if it wasn't so far (and expensive) we would fly up and help you watch the kiddos--they are so much fun and actually we learned a lot by watching them and comparing katie to them plus it gives her a chance to see others like herself, which she has NO ONE here. Sure hope she ends up as self confident and gutsy as you two!

Very Funny!

Sorry...Should have been more clear in my response...I was just reading Kath's post about who will mind her when her husband see's Dr. Nath...That post made me laugh!
Very funny post,Kath!

First, I want to thank Francine for taking so much of the heat for me.
We are not trying to change the way things are done just to make everyone crazy. I had letters all ready to go 4 weeks ago, and then came the first phone call from tch to hold off. Then I changed the letter and had it ready 3 weeks ago. Then came about 17 phone calls. One of them said they were not coming AT ALL. So, I figure, what we have is pretty good. Did I want to get letters out to the families 3 or 4 weeks ago? Yes. Did I? No. The letter tells you not to have your child in the lecture or in the video viewing. And, it says it is not negotiable. This is what tch needs. This is what makes them feel comfortable. This eliminates the appearance of impropriety. There can't be "medical evaluations." That the docs flew under the radar for so long is great. The radar just got lower. We don't want to jeopardize the potential for licenses in the future. We are all hopeful that next year the picnics can go forward as they have in the past. It is difficult for all of us on the east coast to get to tx for evaluations. But the San Diego picnic was a great success, and there are wonderful things we all can learn. Dr. Nath will be giving a lecture which I am looking forward to hearing. And the video viewing will teach all of us what they are looking for when they look at the videos. And if you do not have a video, you will still have your private time with Dr. Nath.
I got involved planning this picnic not just to bring the team from tch to ny, but to get families together to share ideas, to vent to people who understood, and to learn from each other. THAT has not changed. I am hoping for a 75 degree sunny day and lots of great ideas in the "therapy book." We will have a great time.
claudia

I was at the San Diego picnic this past weekend with my daughter Madison. I literally found out on Friday (the day before)that Dr. Nath would be unable to do an actual evaluation with her (basically he couldn't touch her). It took me less then five minutes to do a vido of her to show him her strengths and weaknesses. I was under the impression that it's against the law for him to practice medical in any state that he's not licensed, which makes sense, if he's evaluating your child, then he's practicing medicine. I have to say that even though he was unable to lay a hand on her, he watched her from a distance and watched our video cam (even as small as the screen was). She then sat in my husbands lap and he told him how to position her to show us her shoulder was dislocated and how to put her shoulder back into place. He seems like a very experienced doctor who's had enough experience that he can tell a lot by just watching them from a distance. So I know that many of you may be disappointed, but from my experience with him and the San Diego Picnic I still walked away with more knowledge then I had before meeting with him. It was still worth the trip. Not to mention the fact that Madison has never seen any other kids with a BPI and she just stared at the others in awe that she wasn't the only one.

Claudia - we will without a doubt have a great day...but 75 degrees???? That's quite a tall order!
-francine