United Brachial Plexus Network, Inc.

Mare,
I hope Dr.s read this and learn a better way to "present" the information to us all withoutdistroying HOPE.

Have a good day, you guys.

HUGS all around,
Carolyn J

Mare, I have waited a day or two to post this, thinking of the "RIGHT" words to say. My thought on the whole thing: I don't think the doctors really know what our childrens limitations will or will not be, I say this because.....when Brandon went in for PRimary at 7 months old, he had nothing....not even a glimmer of hope that he would get any function on his own, at that point we were doing primary because according to his doctors, they wanted to make his arm as functional as possible, being able to hold the paper down with his affected arm, being able to hold his pants to button them etc, etc. They basically told us, before primary and Mod quad for that fact, that Brandon would never ride a bike without adaptions, swim for any length of time etc etc. Well to look at him now I would call his doctors crazy and have actually, although I still love them all. His recovery is phenomenal. He rides a bike I bought at WAL MART-No adaptions, he swims like a fish, wears me out just to watch him etc, etc. These kids are resilient, are go getters and will do in their time. Frankie is older, it is harder and he has heard the doctor say these things.....Brandon was little and remembers nothing but the lollipops he got when he went there. I think if Brandon was Frankie's age going through what he had gone through, I would have the same problem with him, he's a teenager for crying out loud !!! LOL ! I think you are going about it the right way. Brandon at 8 1/2 gives me lip(just a little) when I try and correct him on something, or ask him to do something that he doesn't want to do...and he knows what he can do. Keep on keeping on with Frankie, he will realize he has to do it and he will.


It's like going on a diet, you know you have to do it, but then you get a "LIGHT BULB" moment and you just do it and then you wonder why you waited so long, you feel so much better and look even greater !!! Keep your chin up.....GAYLE

Mare
The doctors really cannot say what is in the future for obpi kids.
There are NO long range studies or papers that can tell him how this injury heals as we mature or age.
If they had long range studies, on OBPI who have never had surgery compared to those who have had surgery
perhaps they could predict the future.
Frankie is only 13 he has so much growing to do and should never give up hope.

I was not aware that I had any hope for changes in my arm until I was 32.
After the birth of my third child I had so much pain in my obpi arm.
My hand was shaking more and I realized I was resting with my thumb in.
I knew that was a problem because I could here my mother in my ear saying " Thumb out Kathleen."
I was referred to a "so called" big specialist in NY.
When he examined me then would stop and leave the room and he did it several times.
I was puzzled, now I think he was looking Erb's up in an outdated book... LOL...
He came back in and said " I don't know why you should complain you have a very mild injury.
I'm not sure you even have Erb's Palsy your injury is so mild. And if you think there is anything anyone can do for you that's impossible."
He was cold, nasty and it's seems to me lacking when it came to his medical/people skills.
I cried all the way home.
I was 32 years old and never even realize I had hope of change until this callous stupid so called specialist said took all hope away.
I immediately called our family doctor and his nurse put me right through because I was crying.
I moved so I had not seen him in about 8 years at the time.
He was so furious at the "so called" specialist he asked for his name and number.
I could hear him yelling at that doctor while I was holding on, he was so furious and angry.
He got back on the phone and said " No one ever thought you would move at all, it is truly a miracle that you have healed they way you have.
It was a lot of hard work and therapy and constant attention that got you moving.
He also said "how dare he say you don't have Erb's Palsy!"
I have treated you all your life and you most definitely have Erb's there is no doubt.
Just for the record I have all my nerves impacted and Horner's so I guess it's a global.
As far as I can tell I only have one avulsion because there is only one white spot in my spinal cord.
I wonder what that doctor would have called severe?
After that visit I never mentioned my arm again to any doctor until I was 60 and found UBPN.
And no matter how many doctors I visited over the years I can truly say none of them ever mentioned the "Elephant in the room".
But now I make sure they acknowledge my injury and are aware.

Hope is something that no one has the right to take away from you.
Please tell Frankie it is never to late to get new movements.
I knew this from personal experience.
When I was in my early 50's I started going to a chiropractor.
After two adjustment I was able to get my hand to neutral without using my unaffected hand to force it.
I walked around on cloud 9 for weeks after that.
If I wanted to see my own palm I had to turn my hand over with my unaffected hand and hold it in place.
If I let go it seemed to snap back to the pronated position.
Sometimes it still amazes me that I can just turn my pronated hand to neutral without help.
I can't supinate but I can get to neutral and that was a big deal for me.
So much for giving up hope.

You never can tell how the human body will heal.

I am so sorry to hear that this doctor did not think about how his words would damage Frankie.
This doctor should really rethink the way he speaks to teenagers.
I always knew what was wrong with me.
The doctor always spoke to me even when I was very small.
He encouraged me/my parents to try anything I really wanted to try.
He always told me how well I was doing.
Most important of all he never set limits on what I could do.
Nor did he pulled out his crystal ball to tell me my future.

I'm sorry this is so long but I really think that physicians should think before they set limits that would cause a child to give up.
Hope of making improvement to our skills is what spurs obpi children along.
Take away hope and why bother!
Kath adult/robpi 67

Gayle...You SAID IT!!

All of my son Scott's life(Non-BPI multiple disabilities, now 36)"Specialists and other Professionals" told me "Scott will never"..."He won't be able to..." And other similar statements. I knew inside myself that NOBODY,even ME knew the Final outcomes of all of his 13 surgeries and Theraputic interventions. and it is soo truechildren are very resilient and individual in how they develope to their full potental. Surely Scott's Journey was a "Crooked,Bumpy course. I cannot wait for you all to meet him at CAMP 2007. He IS MY HERO FOR "CAN DO"...& "Stand back and watch me Soar"!!

Kath,I, too,Cried my eyes out after Scott's Dr. AND Assessment Appointments. ..ODD, I NEVER Cried for myself since I was a Teenager....UNTIL I found UBPN and you'all, THEN I cried like a baby, for J-O-Y!

Have a great Day, everyone!

HUGS,
Carolyn J

Hey Mare!
Talking to Frankie will be great, I am glad he is willing to let me email him.

Quick suggestion beforeI forget is to save a few OT or PT appointment that your insurance covers so that if he needs splints adjusted or something new comes up or an eval in a couple months to show him how awesome he is doing he can get treatment.

I remeber being his age and well, it sucked! Things are akward your trying to find your place and starting to think about the future... Friends might be changing, either way its not really very fun.

The doctors comments are definitely hard on him but being out of the room or getting the candy coated version is almost worse. As we are getting older we need to know what the doctors are saying, choices of surgeries become ours and its only fare to be informed! I would say that those doctors could use an earful! I would love to give it to them, they have no right to say how much we will get and take our hope away. ITS WRONG!!
since I am going to college to become an OT I was volunteering last year for the family of a little boy who had brain damage from a chocking accident. The doctors that treated that little boy right after the accident told his parents he would be a vegitable and there was no point to keep him on the ventilator. His mother however could not give up her baby. Now he is three years old and still doesnt talk much, only a couple words his family understands, but in my eyes he is no vegitable at all! He is learning to walk and to crawl, and he goes to school, loves to be read to... All because his mom had hope that her baby would recover.

WE like this little boy will never get full 100% recovery but we can improve no matter how old we are. No doctor has the right to say we wont have any more improvements. Small as they may be, they are there!
4 surgeries a three years of formal therapy and a life time of therapy at home, I am still making gains well except for the one year my doctor told me I need to come to terms, it wasnt going to get any better, I dont need to see you any more. I would love to see her now to show her just how wrong she is!

Frankie might just need a break right now so give him a few days and he will have to realize what HE wants from his arm. He can do anything he sets his mind to no matter what any doctor says! If there is a will, there is a way! It sometimes just takes a while to see that and understand it.

If you want you can try an get Frankie to check out my web site, maybe it will help for him to read about what I went through, its probably pretty similar to where he is. There some pics too one of the evil airplane splint that was followed by the pillow splint, I need to find that pic and post it, I hated that thing, lol. Anyway my site is www.freewebs.com/bpimn

Sorry that was kinda long!
Hugs,
Amy 20 ROBPI from MN

ps tell Frankie I say hi!

Again Thanks Amy your the best and will make a wonderful therapist Frankie got your email he sat and read it carefully and when he told me he heard from you it was like he had a new friend he said he was going to email you back which you should be proud, since he doeesn't email or talk on the phone at all he hates it (BOY THING) I'm going to give him your web site to check out he did ask me if you had to have one of those stupid splints that you have to add foam to inorder to raise it up. he had it and it kept falling over he looked like the leaning tower of pizzia. Mare

Hey Mare,
lol I understand the email/phone thing! It was great to hear back from him!


I think the splints have changed in the last ten years since I had mine. After 6 weeks in a shirt eating airplane splint (shoulder at 90 degrees, elbow at 90 degrees, like a zombie only elbow flexed) I had another 6 week with the pillow splint which I cant find my picture of at school so it must be at home. My pillow splint was just a round pillow strapped to my forearm and around my left shoulder and around my chest. It sucked! But at least it didnt eat my shirts like the airplane splint did. I hope that made sense. Also, my splint was after a Latisimus dorsi transfer, they didnt do MQ 10 years ago, or at least not that I knew about.

Hugs,
Amy

Amy
We know all about the pillow splint he had that for 4 weeks after mod quad then he was put in an airplane spilt made by the OT each day we had to add foam to raise the arm but his arm was too heavy and the splint kept breaking then we discovered an orthotist and the next 3 months were in a brace that you could raise the arm with the touch of a dial.(he still hates it but sleeps in it 2-3 nights a week. I showed frankie your web site he likes the pic of your hair covering your face his hair is long and he does that same thing when pics are snapped of him. he says he's cousin it.In your journal you said you didn't do alot of therapy when you were a teen even after surgery do you think you would have gotten more function if you had ?? I'm kinda afraid to give him a break,afraid that he will not want to start up again or will loose function if he doesn't do it everyday at least the TENS and stretching. I guess come May when the formal therapy stops I can give him a break our pool will be open and he can swim so that will help keep the strength going. Thanks for all the help hopefully Frankie will contact you again, Mare

Hi Mare,
Glad Frankie wanted to check it out! lol I love my cousin it picture! But I hated that splint! THats the evil shirt eating airplane splint, put holes in every single shirt I owned, uhg! It also gave me the elbow contracture I am still working to get rid of.

I do say I didnt do a lot of therapy meaning I had no formal therapy outside of 3 weeks when I was in 7th grade and then June 0f 2004 to now. My family could not afford any thing extra as my dad has a disability and is unable to work. So with a one income family mostly just bills get paid and then food after that there was nothing left.

I did do stretches/ROM usually 5 days a week at school, but being a teen I would "forget" if I didnt want to go. I would get out of Chior 10 minutes early have the passing time in the hall of 5 minutes and be last at lunch 5 or 10 minutes late. That got to be a lot and I just wanted to be with my friends so I would skip it sometimes by saying I forgot.

I do wish that I had had formal therapy after my lat dorsi transfer when I was ten maybe it would have worked? I was only given a home program of ROM not strengthening and I did ok with it but again I was 10 and at the time I thought surgery was going to fix every thing, didnt really know how big a part therapy played.

So I have ended up with amazing ROM but cant use it. I cant seem to get my muscles to initiate or follow through with the movements. Such a bummer since I actually have full passive ROM every where, I can be fully supinated, pronated, flexion of fingers, wrist and elbow, extension of the fingers, wrist, and elbow, shoulder works funny but I get great range. Yet all I can seem to initiate is finger, wrist, and elbow flexion. After a lot of work the past couple years I now have most of my finger extension and a little wrist extension. I am getting much better with elbow extension as well, only 18 degrees to go actively to zero! I also have gotten shoulder abduction to just past 90 degrees!

Maybe if I had had formal therapy that worked on strengthening instead of a home program of only ROM I might have a lot more function now. But then I am not sure if I would have been ready until I was 17 when I realized that I wanted so much more from my arm. Thats when I chose to ask my doctor if I could go into therapy and have since done great because I still want more and have hope that I can get more!

Even if Frankie has a break, maybe he only needs a few days to a week? He still has to realize that he wants more and can get more, all he has to do is work for it! The summer would be a great time for a break! Swimming is wonderful therapy, or maybe you could help him to find activities that he like that could be therapy. I love to do crafts so theey are my therapy sometimes. I am sewing a quilt and thats a lot of work for my bpi arm. I also like to plastic bead you putinto a design and iron them, so I am making them with only my right hand. softball is by far my favorite though and thats a huge work out for my arm! It feels like jello after and I love it! I cant wait for May when I am don with school and can go home and play again! I love my team from last year, we lost every game but I had more fun losing all summer than I ever did in high school winning every game. I cant wait to play again!

Anyway I gotta run, I have class soon so I will catch you later.
Hugs,
Amy

Since Frankie had the mod quad in Nov he has gotten so much he is now able to move his fingers and wrist but wears a splint to put pressure on his knuckles to help the fingers straighten more,thumb still frozen. He can bend and straighten his elbow before he could just bend it, but he does have a bad elbow contraction and dislocated ulna head. The part that stumps his OT and I is why he can't move his arm up past 80 degrees or out to his side its like its stuck but when laying down he can move the arm over his head and out to the side and he can do some external rotation of the forearm but stand him up and it all goes away even though we can feel the muscles kicking in they don't do anything. We asked Dr Nath but he had no answer said Frankie had the tightest shoulder he had ever operated on even in adults and it may take up to 2 yrs or it may not happen at all, this is where I blame myself for not forcing him to have the surgery when he was younger. I just hope someday his arm becomes functional because even the movement he has in his hand now still is non functional. Well gotta go get him from school its OT time. Mare