United Brachial Plexus Network, Inc.

I am SO FRUSTRATED I COULD SCREAM! My son is 11 and has hit another major growth spurt... the pain in his overactive bicep,elbow, rib-pect area are causing him great pain. He cannot sleep at night. Also his fingers on his lt hand are spasming and they are getting stuck OPEN and the muscles are -contracting (for lack of a better word.) causing him great pain.I really need help.. WE HAVE JUST RAN OUT of TYLENOL #3!!!! they gave a big bottle to us after his surg. a year ago and we have been nursing it...since then... The rehab.. Brach plexus Clinc here in Cincinnati, doesn't believe he should be in this much pain that he should need Tyl3
so far after surg. I tryed to explain it was the growth not the surg. causing the pain. they said their was nothing they could do... that they would suggest the pain management clinic... or his Pediatrician. Well his ped never even mentioned his injury, we have recently switched to a family doc over the past 2 months and I seriuosly don't know how he would feel about perscibing pain meds for MIke either. I AM AT WITS END WITH THIS WHOLE THING! Everyone wants to send us to someone else... There is NOPLACE here that wants to deal with ALL the PROBLEMS Mike has to face. I have a call into Texas but.. I don't know whether they can help us or not. I lost it on the phone with Cincinnati's coordinator.... I don't know how much more I can take. His school was very helpful.. But if I can't get anyone to refill and write instructions for them. They can't administer or help!


III HATE THIS!

I've emailed you. I have some techniques you and your son can try.

So sorry to hear this. I am never without prescription strength ibuprofen so I know exactly what you are saying!

One of the things that Dr. Karen Pape mentioned in the 20:4:80 seminar was that puberty is (or will be) a difficult time for bpi kids. Many of them will seemingly regress and will feel pain. It, like puberty itself, will pass, and I know that doesn't make it any better but it does help to explain maybe what your son is going through.

Nancy

Thanks, we did go to the new family doc and he did prescribe or ty3 for us, to alt with Ibupro as needed.
I'm calm now... I know I'll live through the night. HA HA !
Dealing with with this is like putting out constant fires... and surviving multiple train wrecks...
It's hard to be positive during the rough spots. Thanks for being here! and not judging. Yous like extended family for us ... I know I tend to write more during the rough spots and I'm sorry for that.. but it is hard to keep in touch ..it usually means I have to neglect something or someone else...
We are working with Texas also to implement some other stategies.. I'm so glad they are there for us even 1 1/2 year after surgery. I'm so glad they consider our children a "work in progress... it's like having distant family you may not be able to get to them right away but they find a way to help us and be there for us when we are in need.

Thanks again!
if any one else has experience, or suggestions please... post or email

Have you looked into acupuncture/pressure, reiki, massage, myo-fascial release?
Cindy

I know what he is going through. In my teen years I lived on tylenol 3 and flexerils. I do not know how I functioned. I would recommend for you to try lidoderm patches. They are pain patches that last for 12 hours at a time. you use them 12 hours on 12 hours off. You can cut them to the size you need. It takes alot of the edge off the pain.I have just started using them in the past 6 months. Give Mike a hug for me....Judy

YHANKS ALL FOR ALL YOUR SUPPORT!! we are working through this day by day it is so nice to know your here!

I'm sorry to hear your son is in so much pain. I found after one year of absolute hell doctors put me on everything and nothing worked. I was on Vikadin 300 mg I was take one pill every hour until I ran out it did nothing. Then they put me on ativan thinking that would work which didnt. The doctors didnt think it had to do with my erb's and you know what they were wrong. I finally went to a local pain management and Ive been doing the electro current treatment which thank god finally worked on me. Before this the last time I had to go to the ER I had my teeth locked together so tight from the pain I actually broke two and spit out part of the tooth right in front of a nurse. Funny thing is my teeth I could not even feel, at the time they gave me strong pain medication through the iv. I hope and pray that you guys find something that works asap!

K.

I'm not sure exactly of the type of pain your son is having, but I now take a drug called Neurontin which targets pain from nerve damage. You need to find something besides the Tylenol #3 because in my personal experience, you start to need more and more for it to have any effect. By the time I was 25 even a Vicodin lost its edge. I discovered Neurontin, a non-narcotic, through a pain management specialist. They were the first ones to really believe I could have as much pain as I did!

Thqankyou!

we are now on nuerontin. and it is working great!

I haven't asked for the long term yet how this works or if there are any issues with taking it long term
does any one know?