United Brachial Plexus Network, Inc.

I think chiropractic directly affects some of the secondary muscualture imbalances and so forth directly related to BPIs ands may also enhance the nerve growth that occurs naturally...I also think adding huge amounts of fishoils and other EFAs enhance the body's ability to grow nerves too...something I havent heard mentioned in a while...I added the EFAs to my diet and then nursed- I was taking quantum amounts of EFAs for the first 2 1/2 years of Maxs life-
For anyone who doesnt know my situation, ZekeMax also does water therapy,and has regular chiuropractic adjustments...he will be 3 in January.
We were advised at about 3 mos of age to have sugery from 2 popularly thought of professiional groups, the diagnoses were moderate severe and severe...
After waiting the evaluations were great and we were told he no longer needed sugery- we have declined attending recent picnics as we do not wish to promote the attendance at small picnics and local groups when doctors from large institutions that take families out of there local areas and take the care away from the community- are the only ones present-I think the community connection has played a big part in my son's recovery...

Hi Mary, I am so happy to hear how well ZekeMax is doing. I had never heard about the fish oils theory before. How interesting. I've often thought about "what if" we'd known about surgery when Brittney was born. I'm sure we would have been advised to have surgery as soon as possible. Although she had great finger movement and a good grasp, she was unable to lift her arm until she was about 6 months old, and then it was only a little ways - with a straight arm. Bending her elbow seemed like it took forever and she'd turn her little hand away from her to get it to her mouth. She continued to grow stronger little by little and her abilities improved. Sometimes I wonder if she'd be as well off as she is now if we would have had the option of surgery and had taken that option. That's just my thoughts. For those out there choosing not to have surgery for their children - I do not think they are "negligent" as someone stated. It's possible that these parents believe that there are other options to choose besides surgery.

CW1992 will you please tell the story of why your child has not had surgery? Thanks!

There is NO alternative out there or supplement that will repair a RUPTURED or AVULSED NERVE.

respectfully stated,
francine

I agree Francine, and there is no surgery that completely repairs them either.
We all do the best we can sweets and I think the things I did helped my Max and so I share them that they might help another, I am in no way attempting to belittle any thing that anyone,particularly you my friend, has done that may be different.
Louise, I come right out and say what I mean usually, so if you read something into my post I hope you tell me about it in case it was never there,
I did an eval at the 99 camp and again at the 2000 picnic in FL, I have since had a change of heart/mind as many in the email support group that I belong to do also and ...its just the way I feel...I reserve the right to change my mind about it next week
It just happens to be the way alot of other people feel too right now tho- Everyone has differing reasons,peace out!

Hi, i just wanted to say that myself and at least 2 other BPI people i know have benefitted from chiro - it was marymom's enthusiasm for chiro which finally nudged me into trying it and im glad i did.. And yes fishoil and quality nutrition in general, in my and many others opinion, helps your bod heal and optimise health - never a bad idea!

I am adult OBPI

My mother made a choice for me based on her research when I was born all surgery was experimental. She did not just accept any doctors view and she took me all over the New York Metropolitan Area for opinions as she wanted what was best for me.. I was paralyzed-- nothing nada...no movement ice cold frozen arm.
She made the choice not to have surgery
If my mother had made the choice for surgery and it failed I would still think she did her best and made the right choice for me... I view the parents on this board as being educated and well informed seeking only the best for their children. When it comes to decisions regarding their children welfare they are mature enough not to succumb to peer pressure. Otherwise they would not be here asking the questions they ask.

I do not view this board or the picnics as pressuring parents to have surgery...
The fact that evaluations are available just helps those who make the choice to have one.
I have attended 4 picnics and at only 2 did I choose to let myself be evaluated and it was out of my own curiosity that I did so. The evaluations were helpful non pressure and informative - because they gave me the information necessary to bring to my on personal physician and helped me with the physical problems I have that are directly related to my obpi injury.
I was evaluated at was the Florida 2000 to (hi Marymom , Max, dave m. and all the nice parents I met there. The Florida picnic gave me the opportunity to meet for the first time ever-- adults with my birth injury...Nancy and Judy T.... I cannot explain the joy felt at comparing our arms and experiences face to face and arm to arm. That is something only another obpi could understand - No one can fully understand what it is like to be obpi unless you are obpi. Children often will not talk to there parents about there feelings and we often choose not to...no matter how great the relationship with that parent is.


At the four picnics I was overjoyed at the sight of the children bonding and comparing arms just as Nancy and Judy and I did... I felt no pressured to be examined, nor was I ever made feel that if I did not get an evaluation I was not welcome.
Therefore, I support the idea of picnics no matter who pays for them. It gives the children much needed contact with other children who face the same challenges and issues. Issues only another obpi child can understand... It helps the child to see that they are not alone in this world and builds support network for them as they grow with this injury.

There are so many more issues relating to obpi that need to be addressed besides surgery

I use vitamin therapy… chiropractor… myofacial release… Aqua therapy…
The physical therapist I use is also a chiropractor and uses mild adjustments on me. Due to the extent of the neck damage, during delivery, it was not advisable to constantly have my neck cracked by traditional chiropractor. Therefore, I sought one who used a combination of treatments…

FYI ----------Many obpi adults have reported neck, shoulder and back problems that the normal healthy person who was not injured at birth my not have… Chiropractor is not always advisable and should be used only after checking out the credentials of the said practitioner. The person who is working on OBPI must be very familiar with this injury and all of the many complications involved. The first Chiropractor I used had two cousins with OBPI and was sort of familiar with it. The second one and PT read all of the infant material from the Awareness packets and said he really needed it to treat me properly. He would not allow his partners to work on me because they were not familiar with obpi.

I am just an observer on this board. I read the posts and then think about how it relates to obpi and the many issues I have faced over my lifetime as OBPI… I try to put myself in the parent's place because I am a parent… I put my self in the child's place because I was an OBPI child and now as an adult I can only give my experiences, feeling and suggestion to make life better for both the parents and the children. UBPN most certainly offer the most information regarding 0bpi… and I don't mean just surgery. I have researched this subject for many years and for at least 5 years on the net before I found this web site. If it only dealt with surgery I would not have stayed because I was unfamiliar with surgery and was told by a (now I think not so) famous NY doctor that "I had some nerve to complain I was lucky I could use my arm" and nothing new out there."
Kath

Sorry for all the question marks instead of ......
I hope it does not change the content of my post to drasticly.......
As many of you may or may not know - and I learned through my private e-mail group of obpi adults...most are not good spellers and need spell check... I use Word...and got the ????????

Ryan do you hear me....LOL.... my daily nag to him about spell check...LOL..
Kath

I have to throw in my .02. Matthew has gone to several acupuncture sessions, He had a huge regeneration on his ruptured C5. If treatment continued without surgery the nerve may have reconnected. If kids don't have surgery, it's hard to tell the extent of the injury because as far as I know there's no complete way to diagnose without the child being opened up to see.