United Brachial Plexus Network, Inc.

My baby ( 4 months now) was born with a BP injury. She was 10lbs. 1 oz. and had a traumatic delivery. I'm just learning about the results and effects of these injuries. A neurologist is seeing her and says we won't know the extent of the damage until she's a year old. She lifts her arm but it drags when she scoots and she can't uncurl two of her fingers. her arm is considerably weaker but there has been some improvement since birth when her arm was paralyzed for a couple weeks. I'm basically here looking for info., support and advice.

My son Khiron was born Dec 20, 2001 w/ erbs palsy of his left arm. He began seeing a neurologist in Jan 2002 and therapy in Feb 2002.

My husband and I were not receptive to the neurologist's recommendation of surgery at Texas Children's Hospital, Houston.
Our journey: Dec. 2002 sent a video tape to TCCH per neurologist, TCH recommended surgery February 2003, March 2003 drove to NY for picnic where Dr. Nath evaluated Khiron in person and surgery was scheduled for May 19, 2003. Khiron is 4 weeks post surgery and doing great! We give praise to GOD for HIS wonderful Blessings and guidance!

I pray the same guidance for you and Blessings upon your daughter.

thanks for the reply and best wishes for your son's recovery.

Smokey:

You have come to the right place for support. However please consider having your daughter evaluated if she does not meet the BPI specialists guidelines for return (help me out here Fran--what is it--biceps by 3 or 4 months?). IF for some reason she did end up needing surgery (which of course you always have the option of not doing) it has been noted that there is a window of opportunity for them to have a better potential recovery. Hence, the thoughts are once that window is closed less recovery is obtainable. Many, Many children do not need surgery however and we pray that this is the case for your daughter.

There are many support groups out here and perhaps you are close to one. Do you mind if I ask what state/area you are from?

I have a 3 year old grandchild with a ROBPI, she has had 3 surgeries so far and has a few more in her future. She works very hard to be such a young child but she is a joy. You may very well find as your child grows that she may be a lot like most of our kids (not all) very stubborn, willful and full of spunk! They show us all that while they may do something later or differently, by golly they are going to do it! Have you visited www.injurednewborn.com yet? Good place to start learning, getting aquainted. I believe the home page here has wonderful resources available for your information as well. Welcome to the boards. Sorry to see you here, our numbers grow everyday, but hope we can help. By the way--at four months a BPI specialist should be able to give you a GENERAL idea of what can be expected from your child's spontaneous recovery. There are a number of parents here that were told to wait or there was nothing to be done--only to find out differently a few years later. Be your child's #1 advocate, arm yourself with knowledge.

Smokey - welcome to the message board! I'm sorry that you are here but glad you are here. This is a great place - tons of people here to support each other!

There is a page on here that I hope you can read as soon as possible. If you go back to the home page and look on the right side- middle - you will see a link for INFORMATION FOR NEW PARENTS - read this page - it has a lot of information for you.

Then when you can tolerate some more information - I certainly know that it takes time, lots of time - go back to that homepage and click on anything "awareness" and go to the resources section and just pick one thing after another.... don't expect to take it all in... I've been in this for 5 years and I learn new things every single day.

I'm going to give you the most important piece of information you need to have at this moment and that is to get your child to a bpi specialist IMMEDIATELY.

Four months of age IS THE TIME when they evaluate for whether or not surgery is necessary. It's especially important to see this doc asap because there is hand/finger involvement. What you can do IMMEDIATELY probably faster than you can get an appointment is to send a video to one of the specialists to have them take a look at it - but call them first to let them know it's coming and that she's 4 months old - they'll pull it and look at it really fast.

We take our daughter to Texas Childrens Hospital (we're from PA) and they do video evaluations (http://www.injurednewborn.com/maia/video.html) but there are other specialists that do video evals as well. On the home page here there is a link to Medical Resources(left, bottom, middle) - click there and there may be someone close to where you live. Actually if you can post to us where you live, we might know someone in your area (maybe someone here already goes there...).

Smokey - time is VERY important right now and you've come here right on time. If your child has a severe injury that requires surgical intervention the time frame is very important - you get better recovery when it is done early.

Please know up front that if you have to travel to a bpi clinic, there is free medical airfare available and discounts on hotels, etc. I know that I was put back by having to travel to see a doc but actually it's quite easy and can be done cost effectively.

We're here for you - we're all in this together.

God bless your sweetypie,
francine

Thank you for your quick responses. I got teary eyed when I finally found a site that could help. You seem to be it. I did look up your website Francine and was a little overwhelmed. i didn't really "get into" it though as my 3 year old boy was climbing all over me. I live in So. Cal. My situation is this: At age 42, I was expecting a "surprise" 4th child. During the pregancy, I was most concerned with Down's . Labor was going well (better than my other 3) when baby got the rt. shoulder stuck. Docs rushed in and did Woods Manuever. baby was not breathing, blue and unresponsive. After several minutes she responded. x-rays later showed no clavicle break but she couldn't move rt. arm. She's been seen by Neurologist at CHOC (is this the same as a specialist you've mentioned?) who says she has a C6 stretch and doesn't need surgery. I wasn't too impressed with the evaluation however and actually felt kind of stupid being there (because there are so many other kids with very "serious" neurological problems.) It seems he took it rather lightly and you're right - did take the "wait and see" approach. He said to do thearapy and exercises (but didn't really tell me how to do those). She (baby) does have good range of motion but as she's getting older and more mobile, I'm noticing things (differences) between her left (strong) arm and her right. I would be very interested in a suggestion for a BPI specialist in my area.

Thanks for your quick responses. I got teary eyed when I found this site. I did visit your website Francine but didn't get too far into it (with my 3 year old boy climbing on me). My situation is this: At age 42, I beame pregant with my 4th child. I was mostly concerned about Downs. Labor was going well (better than my other 3) when during delivery, the baby's shoulder got stuck. Docs rushed in and did Woods manuever. she was not breathing, blue and unresponsive. after several tense minutes, she responded but her rt. arm was limp. X-rays showed no clavicle break. We took her to a pediatric neurolgist at CHOC(is that the same as the specialist you recommend?) He said she has a C5 and C6 stretch and you're right, did the "wait and see" approach. He said she "probably" won't need surgery. that it has a very low success rate and it would be bad to put the baby through something that traumatic. He said to do exercise but didn't really show us how. I wasn't too impressed with the evaluation - infact I felt kind of stupid there (like there are so many other kids with "serious" neurological problems) I felt he took it lightly. But its my baby and its her arm! She does have pretty good range of motion now including hand to mouth, but as she gets older and more mobile, I'm seeing definate differences between her left (strong) arm and her right. I live in So. Cal and would be very interested in recommendations for my area.

hi again....

first things first - that your sweety has hand to mouth is GREAT... is it while she is sitting up or while she is laying down? (whether or not gravity helps is a big difference) - I still think you should send a tape in to get evaluated immediately to evaluate the strength of the hand to mouth and also because of the finger issues you mentioned in your earlier post.

"that it has a very low success rate and it would be bad to put the baby through something that traumatic"

I cringe when I hear a doctor say that. My daughter had NOTHING and had it not been for her nerve grafting surgery, she would probably still have NOTHING. We waited an extra three months to make sure she really had nothing also. There are specialists out there that are lousy and specialists that are really great - you need to find a GREAT one and your chances at great success go up exponentially. Of course some kid's injuries are so extensive that there may not be much to recover - it's all a matter of how much they have to work with - there has to be a place to sew the nerve into.

I don't know where in California you live but there is a picnic in San Diego coming up and Dr. Nath from Texas Childrens Hospital will be there evaluating children. Here is the information:

===========================================================================================================

The appointments are filling up, please call ASAP

MEDICAL EVALUATIONS

Dr. Rahul K. Nath, an internationally reknown Brachial Plexus expert from Texas Children’s Hospital, (licensed physician and surgeon in California) will be available to evaluate patients at the following times:


Friday, August 8th: Hilton Garden Inn Conference Room:
4:00 PM - 6:00 PM
6:30 PM - 9:00 PM

Saturday, August 9th (at the picnic: see below):
11:00 AM – 12:30 PM
1:00 PM – 4:00 PM


For more information or to schedule an appointment, contact Connie Cannon at

(760) 930-9785 cc@conniecannonart.com


9th Annual San Diego Brachial Plexus Network (SDBPN) Picnic 2003

An Event for Families and Friends of Those Affected by Brachial Plexus Injuries.

Saturday, August 9, 2002 11am -3pm
Oak Crest Park
1219 Encinitas Blvd.
Encinitas, CA 92024

11:30pm -1:30pm Lunch will be served

All American Barbeque provided for lunch

12:00pm - 3:00pm Clowns and Face Painting
provided by Kelly's Restaurant, Long Beach, CA

1:30pm – 2:30pm J.W. Tumbles
Provided by the Law Offices of Carl McMahan

For More Information Contact:
Molly Pereira (Membership Director)
(760) 757-4193 mmepereira@msn.com

Please return this reservation form with payment by July 15, 2003

Lunch is optional, feel free to bring your own, however, RSVP is required ASAP.


Name: ___________________________ Phone#_________________________


Address: __________________________________________________________


e-mail: ___________________________________________________________



#Attending # Lunches $$$



Adults: @$10.00

Children 4-12 @ $ 5.00

Children Under 4 FREE $0.00

Total



Please make check payable to San Diego Brachial Plexus Network or (SDBPN)

Send to: SDBPN 7040 Avenida Encinas #104-281 Carlsbad, CA 92009

Questions? Please contact our Membership Director, Molly Pereira at

(760) 757-4193 mmepereira@msn.com

Smokey - realized that I never signed off the above post...

I'm sorry if I'm overwhelming you - but it's just that she's 4 months old and it pulls my heart strings. I have this guilt that had I brought my daughter in at 4 months and not at 7 months, I think her recovery would have been so much better. So I'm not trying to pressure you but just telling you what it is. IF a BPI SPECIALIST told you to wait because things are moving along quite nicely, I would have written a hug to you and welcomed you and that's it. But the fact that your neurologist made that comment - well it sends up my defensive feelers and danger signs.

I know that people from your area go to TCH - but there may also be bpi specialists in your area that I'm not aware of. Contact Connie Cannon from the SD support group and maybe she can give you insight into the area. (760) 930-9785 cc@conniecannonart.com Her daughter is six years old so she's quite experienced and a great woman, too!

I do wish you the best and truly hope that your daughter's injury doesn't require surgical intervention - but if it does - there are some great doctors out there!

big hugs,
francine

thanks for the picnic info.! i'll be looking into that for sure.
baby has hand to mouth sitting up, but not much control . biceps are weak and less defined. can't grasp well. i'm convinced now after talking to you that I should get another opinion, but before August. I'll get that tape made. Where do I send it? by the way, Beloved victory is with me.