Looking for support. My daughter has Erb's Palsy.

[SydneyRose]

Hi everyone,
I'm a new mother with a baby girl, Sydney Rose. Sydney was born with a visible bruise on her elbow and back. She was unable to move her left arm. The pedi recomended that we see a pedi neurologist. Our pedi neurologist diagnosed Sydney with Erb's Palsy. We are getting Sydney physical therapy and massage therapy in hopes that he condition will heal and she will be fully functional some day. sydney is just shy of 3 months old and has progressed since birth.

I am wondering if anyone has any advice, thoughts, support, and if there are any groups, meetings, or functions that go on in Massachusetts or New Hampshire??

Thank You
Gina Scanlon

[Holly M]

Welcome

I live in California, but there are many people on these boards from the east coast. How much function does your daughter have with her arm? The good news she has progressed since birth. Therapy and massaging is very important. Did she have any movement at birth? Feel free to email me. pook779@sbcglobal.net

Holly

[SydneyRose]

At birth, Sydney had movement in the fingers and could move her shoulder minimally. She could not raise her arm at all. Since birth, Sydney is now able to bring her arm up to her chest and helps it up to her mouth with the right hand. She has more movement with it now, but still does not use her bicep muscle and doesn't raise the arm above her mouth. I'm hoping that these movements come with time. But doesn't every mother...

Sydney's neurologist says he feels confident that with time she will heal and be ok...but there's always that "what if." And I wouldn't want to wait too long and miss oportunities for other treatments.

Thank you for responding. I appreciate it. How long have you been part of this message board? I'm really glad I have found it.

Thank You
GinA!

[Matt's Dad]

Welcome Gina. Sorry to hear about your daughter.
My name is Bernie, I have a son Matthew (age 6) with a left BPI.

It seems like you are on the right track in seeing a pedi neurologist and getting PT.
One recommendation I have is to see a BPI specialist to supplement the neurologist and therapist. The UBPN has a medical resources page you can check out: http://ubpn.org/medicalresources/.
Dr. Waters is close by in Boston and Dr. Kozin, who sees patients for free at Shriners, is in Philadelphia.
We saw both a pediatric neurologist and a BPI specialist, Dr. Nath.

Keep in mind that hand to mouth is a very important milestone, as I'm sure you were told. The fact that Sydney has made progress is a good sign. These types of injuries require some patience, even though it's tough to wait.

If you have any questions, feel free to ask.
There are many members here who are willing to help.

[ptrefam]

Gina,
My son was injured later in life so I can't really help you. But, I wanted to post this link of a baby that had a BPI and her recovery. I think if I was a new parent I would like to see this. Just remember that each of these injuries is different, as is each recovery. But this may give you some ideas of what to look for.
http://www.youtube.com/watch?v=wqxsAbP-XNU
Congratulations on the baby and enjoy every minute, they grow up so fast.
Sue

[SydneyRose]

Thank you so much for your information. We are heading back to see our pedi neurologist in a few weeks and we are going to bring up Dr. Waters.

How is your son doing?

I'm so glad I found this message board. Being out on maternity leave I'm home alone alot...well with the baby of course...but and idle mind is the devils play, and this site with people to talk to is going to be a great help.

Looking up Erb's Palsy online mainly gives you all the negative information like malpractice lawyers and how bad it can be. At least here, we can see the improvements kids are making and knowing that kids can and do get better.

Thanks Again!

Gina

[SydneyRose]

Sue...that video was very inspirational and reassuring. I appreciate your sharing that with me. My husband watched it too and he was saying how similar it was to Sydney's movements.

Thank You!

How is your son doing?

GinA!

[JamieMarie'smommie]

Gina, I'm one of the few people on her from New Hampshire I believe there are maybe 4 BPI people in the state. My daughter has a Right OBPI. We see Dr. Melkonian and Dr. Bae. Dr. Melkonian is in Exeter. and Dr. Bae is at Children's in Boston. If you have any questions please feel free to email me. My email address is nhnativeamerican2003@yahoo.com. I'm also on Aol Instant messenger my screen name for aol is Berta5606@aol.com.

Amanda (mom to Jamie 2yrs old ROBPI)

[Kath]

Gina

I am glad you found us. It is so important for you to have others to speak to about this injury.
It is more important to have people who understand exactly what you are going through at this time.

First of all I would like to say congratulations on your precious new baby.

I am a birth injured adult, in fact I am so adult that I am a grandmother.

I know how worried you are right now. It takes so long before you know the full extent of your baby's injury and its so hard waiting.
Until almost 7 years ago I thought I was the only one in the world with this "rare" birth injury.
It is great not to be alone while wading your way through all of the information out there on the Internet.
Some of the information on BPI is correct and some information is totally wrong. It's so hard.
My whole life was/is not about my injury and I was raised to feel I was perfectly normal and understood I just did something differently.

I want to encourage you to enjoy your baby.
I know now that my injury had a major impact on my parents.
But, most of my life I believe I was the joy of my Mother's old age... LOL...

I hope you baby has a great healing and makes great progress.

Kathleen M adult/robpi
Member UBPN BOD

[SydneyRose]

Amanda
Thank you so much.
How old is your daughter and how is she doing?

Wow only 4 of us here in NH huh?

I'm on instant messenger as well: Gtrouble68. I will ad you to my buddy list and make note of your email address. Thank You so much!

Check out Sydney's Baby website.
www.Sydneyscanlon.com
A good friend of ours created this site for her.