United Brachial Plexus Network, Inc.

Frankie had his mod quad done 6 months ago his therapy is about to end. I wanted to know how long others had therapy for and do you still do exercises on your own. Being 14 I'm trying to get him to do his exercises by him self so it becomes a habit. Not working!!!! he always has more important things to do. His muscles still are very weak and he doesn't have much range when standing but laying down he can move his arm all the way over his head. I also wanted to know what was the time span of seeing results I have been told it could take up to two years and others seem to think its not going to get much more then what he has. Any advice I'm getting frustrated and he just wants to be left alone to be a teen.Frankie has never had a problem with only having use of one arm and i think its hard now to get him to be concerned about it, although he wanted the mod quad and was thrilled with the results that have happened I don't think he wants to work as hard as he has to or should be. does that make sense???? Mare

OK,Mare
...So frankie just wants to be a teenager..,then, teens DO household chores at home prior to 16 & a "Work permit". Washing Windows IS needed to help You out too (for all you've done too??!!)Washing Windows with the BPI limbs as far as he is ablewithout PainIS very good therapy too!!

HUGS,
Carolyn J
ADult LOBPI/68 & "Bossy" sometimes..

ps..IS resistence to household chores,a teenage thing?? You Bet! Pay him if you have too. I believe in "incentives"!!!


Message was edited by: Carolyn J

Oh he does his chores and works with me for free on weekends but as far as washing windows and dusting with his left hand it does not move and the palm is facing up. In order to even dust he would have to put pressure on the back of his hand and wrist which is a big no no he already has broke his wrist 4 times and the forearm once in his sleep. So it really has to be an exercise program geared to the upper arm and shoulder. But thanks for caring Carolyn. HUGS Mare

As much as you probably dont want to hear this right now, Frankie has to want to work hard in therapy. There are always going to be more important things to do than sit for 30 min to an hour doing therapy. Once Frankie realizes that HE wants more he will begin to make time for his therapy. Its not fun but we must do it if we want to make gains or keep from having losses.

Does he want to talk to other bpi people? Doesnt seem to be a guy thing but its worth a shot. Maybe if he can hear from someone else that it is possible to improve at his age and older (I am 20 and am still making gains, I have to work hard for them but I am making gains!)

Sorry I dont have any tricky wanys to get him to do his therapy. Well other than swimming, does he like to swim? Its great therapy!

Good luck,
Amy 20 years old ROBPI from MN

Thank Amy
I asked him if he wanted to go on the board he said no but will respond to your emails His address is Tippmann2193@aol.com. He just got done with his TENS. Frankie does do his exercises everyday but only because I'm standing over him like a drill Sergeant and I have to pay him to wear his splints $5.00 for a weekend in the mod quad splint. He can't wait till we open the pool he loves to swim and will be able to do so much in the water without the gravity thing. I often wonder if all this negativity is due to the doctors all telling him he has gotten all he's going to get, and that there is nothing else that can be done. One even told him he didn't see a difference in function since the surgery. I don't know I just keep nagging and I hate it. Thanks for the help Mare

Mare,
I think you are on to something...Remember there are Secondary medical Issues with OBPI's...Emotional/Psychological, among them that are uniquely individual in how it all gets expressed.
I know he's anti-Dr. etc right now but give him space and time and let HIM email Amy who's 20 when HE'S ready['dooesn't appear he is ready now] . You can click on anyone's name posted IN BLUE to email them directly and privately......this is only a suggestion from a caring "Bossy Ole' Lady"....

HUGS all around,
Carolyn J


Message was edited by: Carolyn J

Definitly not wanting to do the therapy and not wear the splits would be from what the doctors are saying! He needs to know that there is still hope and that he is not wasting his time!!!

I would say hes not "clicking" with those doctors! When the right one comes along they dont tell you to suck it up and get over it, they comfort you and at least let you have the feeling of hope! With out hope there is no point in keeping up with the therapy! I lost hope for an entire year because a doctor told me what I had was all I would ever have. I couldnt even do my hair! That was so not ok with me, I cried the entire 4 and a half hour trip home and many days after. It was not until a year later that I had horrible back pain (I was taking 4 ibuprofen several times a day at about age 13 or 14, I cant remember exactly) that I found an awesome doctor! He is just so caring and never tells me that it over, this is all you will get. I know that my options are slimmer but I am still making progress!

At Frankies age a drill sergent might be what he needs! I still do sometimes and I am 20. I tend to work harder when I know some one else will be able to see the difference in numbers. Seeing the difference functionally is very hard as the changes are slow but they do show up in numbers! I can finally reach just above 90 degrees! not that exciting for most but I have been working on that for a year, not as hard as I should but I am working on it.

You have a pool, how awesome is that!!! I bet Frankie will make some progress once he gets swimming. Make sure he still has hope! When you lose your hope you lose most all of your motivation and thats a horrible loss! Find a dr or OT/PT that he can trust and be there to tell him he can get more.

Thats where I am super lucky, my OT is the most amazing woman ever! She does not give up on me, we always just try one more thing and so far its all been working, I have use of my hand again for activities, its not just there any more. My dr is also quite awesome for me, we get along great! He is always looking for more options for me. Together they make an excellent team!

I will email Frankie and introduce myself to him. If he feels like chatting thats great! I hope I hear from him but dont press it if he does want to reply thats ok too.

Now go give him some hope!!! Dont let him throw in the towel!
Hugs,
Amy 20 years old ROBPI from MN

Thanks Amy
I told him he might be getting an email from you and he said he might email you back. We have a great OT but that stops in 21 more visits the insurance only gives us 60 visits a year and she works for a specialized children's hospital that gets $180 a visit so in about a month I'm the new OT/PT I'm trying to learn as much as possible as fast as I can. As far as doctors, he has none just a primary care doctor, his surgery was with Dr Nath and has made the rounds to all the hospitals in NJ NY PA VA and TX all give us no hope some surprised I even had the mod quad done saying it wouldn't help. I agree a lot about the doctors comments having a negative affect on him you would think they would ask him to leave the room and talk with me he may be 5'9 and 180 lbs and look like a man but he is still a little kid of 14 with feeling. I want to Thank You Again for reaching out to him it means a lot
Mare

Mare,
PLEASE ALWAYS INCLUDE Frankie in ALLdiscussions/talks with Dr.s!! Our Kids[me included as a child AND my son,Scott too]ALWAYS know when you talk to Drs alone and it does BAD things to self esteem and feelings about one's body self-image. It IS ALWAYS BEST TO TALK WITH YOUR CHILD AT LEAST IN THE SAME ROOM,or that "Secretnegative stuff" is hard to erase.Better yet hopefully the Dr. talks directly to a Child that is in the room! ....Sorry I'm on my SoapBox, but this is my Mantra to every parent of a Treasure-Child I meet.[I also made sure the Dr. said "something" to Scott at the time].

HUGS,
Carolyn J--[I'll go take my Nap now...lol] 's


Message was edited by: Carolyn J

Frankie always stays in the room and I think that is the problem. The things the doctors have said directly to him have stripped him of any hope. To be told at 14 that you need to come to terms with the fact that your injury is severe and will never get any better and that there is no surgeon in the world that can fix you that rough. He was given such high hope after the mod quad and now the other doctors seem to be stripping that all away. Mare