Looking for advice

[monica]

Hi,

I am new to this board, and I am hoping to find some opinions and personal insights on helping a newborn who has Brachial Plexus.

I have a son who was born at 11 pounds only 10 days ago. As a result of his size and a very difficult delivery, he has suffered some nerve damage in his right upper arm. He has tentatively been diagnosed with erb's palsy in this right arm.

On the encouraging side, he has quite a bit of wrist movement. His grip and finger movements are equal to that in his good arm. He also has shown just a tiny bit of shoulder movement, he can move his whole arm stiffly up and down about an inch from the floor to his midline. However, he can not flex his elbow at all, or move his arm across his body.

We have taken him to a physical therapist as a start, however they have only seen one or two cases, which was a little discouraging to us. We look forward to an appointment next week with a neurosurgeon at a clinic where they specialize in Brachial Plexus and will also refer us to their own occupational therapist. We mainly have had difficulty in determining where our son stands in terms of chances of recovery, and what we can be expecting. All the doctors have said to wait 2 months, do the exercises, and he will be likely to fully recover. I have a hard time believing it! We really would like to know more about what makes a full recovery possible versus a partial recovery, and how to evaluate progress at this early stage. We are hopeful our upcoming appointments will better inform us too.

I am very interested in your own opinions and ideas on this, since we are just starting out on this path. I would like to know if you have any suggestions, or any insight on my baby's condition based upon your own experiences. Any advice or suggestion, for better or worse would be welcomed.

Thanks,

Monica

[Jess in MI]

First off, congrats on your new bundle of joy. Remember to take time to enjoy him, he won't stay little long!!

I don't know of any sure way of telling whether a child will get a full recovery. I know when Lauren was little I was big into bpi chats and message boards because I wanted to compare her function to that of other bpi kids. That was my way of feeling out where her damaged lied and what areas we needed to concentrate on. Although, I've never been able to attend any, I think going to a picnic or two would give you a good idea of how your son's function compares to other's.

I think you're starting off on the correct path. Information will be your key to success. Be prepared for a lack of experience with bpi's from most doctors and therapist. I live in a rural area and I generally know more about bpi's than any physician or therapist that we've seen. But they know more about therapy and medicine so with good communication we have been able to share our knowledge and acheived some great recovery.

Again congrats on your new little guy! I'm sure he's a joy! Continue to enjoy his every minute and continue to seek knowledge regarding bpi (when he's sleeping of course!!LOL) Best wishes to you in the future. Jess

[Bridget]

Hello Monica,

Welcome to our community. Congratulations on your baby!

You have a head start: you have started therapy, you have an appointment with a specialist (is this specialist on our Medical Resources List? If not, let us know), and you are here.

Parents and individuals living with this injury can be a wonderful source of not only support, but vital information as well. I'm sure that as you participate in this forum and in our community you will find this to be true.

Where do you live? There may be a local support group in your area that can be a great resource.

There are never any guarantees about recovery, but one rule of thumb that seems to be pretty consistent is that the longer it takes for any recovery to occur the less chance of full recovery. And we have also seen research that suggests that even for those babies who have "full" recovery shortly after birth, residual effects can appear at later dates (around age 5-6). So...it is good that you have seen some signs of recovery already. Let's hope he continues to improve steadily!

Seeing a specialist (or two or three) is a really good way to gather a whole spectrum of information from which you can base decisions for the future.

Best of luck,
Bridget

[m&mmom]

Monica,
My daugther Melanie recovered around 8 weeks. My son Matthew suffered a total plexus injury including phrenic nerve damage. He had primary surgery and is still on the path to recovery. He has occupational and physical therapy along with chiropractic/reiki energy and acupuncture treatments. I strongly stand behind acupuncture we have seen some pretty good results from that.
It's very hard to judge what kind of recovery your son will have. Even kids with the same ruptures etc may recover different.
After seeing a specialist they may give you a better idea. Matthew's 14 1/2 months and we still don't know how much recovery he'll get but the specialists are amazed with what he's doing every time they see him.
Cindy

[monica]

Hi Jess,

Thanks for the reply.

> Remember to take time to enjoy him, he won't stay
> little long!!

We do enjoy him a lot. However, what you say is true. It is frustrating because we are letting the newborn days slip by in a sense. We are so focused on his arm, and anxious for the 2 month mark to see if he has made progress. I know that these early days will pass before our eyes.

Although we are not in a rural area, and are fortunate to have many medical resources available to us, we are also finding that there are not many therapists and doctors poorly educated on this topic, even in our area. We felt like our son was more or less a guinea pig at the physical therapy appointment. They had worked with one other girl that they were able to discuss with us.

How old is Lauren now, and how is she doing?
We would like to attend a picnic, I will have to keep this in mind.

Thanks,

Monica

[monica]

Hi Bridget,

Thanks for your reply.

I live in the northwest suburbs of Chicago, and the neurologist is at a b.p. clinic in Milwaukee, WI. They say that they have seen hundreds of cases, so we are hopeful. They also have an occupational therapist that they recommend too.

I would consider going to a local support group for more information. Where can I find a directory, or a listing?

We are encouraged by the amount of movement that he has, mainly in his hand, but it is hard to imagine a full recovery at this time.

Monica

[monica]

Hi Cindy,

Thanks for your reply.

I am curious to know what types of motion ranges did Melanie show at birth and what types of stages of progression did you see up to her recovery at 8 weeks? I realize that every recovery is individual in progression, but it would be nice to have an example. I also assume that with recovery, you observe progression first, not just overnight miracles (although it would be nice!)

I wondered about accupunture as an option. I work with animals, and I have seen really great things done with accupunture and pets, so I am a believer too. I would be very interested in looking into this for my son. How did you find an accupuncturist for this type of injury?

I hope that your son's progress continues to amaze!

Monica

[francine]

Monica - there is a great support group in Chicago and they are having a picnic this summer.

here's the page
http://www.injurednewborn.com/gatherings.html

the link on the picnic info will get you to the support group leader for the chicago support group! nice group!

also check this out...

http://ubpn.org/awareness - hit birth injury link

and this on the home page http://ubpn.org hit the link on the right side for Information for New Parents

Also - the medical resources listing is on the home page middle left side...

welcome to the message board!!

-francine

http://www.injurednewborn.com

[SarahR]

Hi Monica,

Congratulations on the birth of your son!

I remembered the following post from a few days ago so I copied and pasted it for you.

Best wishes to you and your family
Sarah

---------------------------------------------
Still taking registrations for CHICAGO PICNIC
Posted: Jun 3, 2002 10:36 PM

September 7, 2002 - Dr. Nath from TCH will be attending

Please contact me for registration details
chicago_bpi@hotmail.com
or (773)445-4652

Jennifer

[soulofjustice]

Congrat on your baby My daughter could move her wrist and fingers at birth she could not do much else. She is two now and still is in therapy. The roms are very important too. The doc that delivered her told me that it will be normal within weeks youll notice alot well he was wrong and I found this site when she about 1 month if I am correct maybe a little older. Dont belive the doc. Good luck and your on the right track. Keep us all posted