United Brachial Plexus Network, Inc.

I haven't posted for awhile but I was wondering if any
of you mothers could offer some advice.

Abbie is now 10 months old and we have not been able to
get an official diagnoses of her condition. She has
seen a neurologist, a pediatric optometrist, a pediatric physical therapist and a pediatric pysiatrist. She has had an EMG and an MRI.

None of the tests have come back with positive results.
Which we are really grateful for, but she still continues to tilt her head to the right and holds uses her left arm "differently " (although she has gained function of her arm)

Many of the posting I have read have referred to shoulder dislocation. An x-ray did not show any dislocation. Should I explore this further?

Also do any of you moms know how acurate EMG results
are? They only did two "pokes" one for the biceps and
one for the deltoids. The report indicates no nerve damage and that we should pursue the stroke theory.
The MRI did not show any evidence of stroke or any
pinched nerves in the cervical cord.

So far all of her doctors feel she is progressing well and that we don't need to pursue this further. Quite honestly I feel very alone in my pursuit of an answer.
But as a mother I feel I need to continue to advocate
on her behalf. I would be crushed to find out later on
in Abbie's life that if we only knew this or that or had done this or that while she was young things could
be different for her.

Any advice?

I would definitly get other opinions. There is something wrong with your child! You deserve to know about it. I have heard that EMG's are not accurate. My daughter has had one and is going through another in February. I guess you could say it is a 50/50 chance. It gives you a good idea about what is going on though. Good luck and keep us updated!
Tracey

Hello,

In the search for a diagnosis for your daughter you may wish to consult with a brachial plexus injury specialist. They should be able to tell you if your daughter has a bpi or not. Please tell us where you live, and perhaps we can guide you to a specialist in your area. I would also suggest phoning the brachial plexus clinic at Texas Children's Hospital to discuss your situation if you are open to that idea.

Good luck,
Bridget

I'm so sorry to hear about your little girl, my brother in laws niece suffered a stroke as an infant she does very well for herself, but has an obvious difference on the left side of her body- To rule out BPI completely I would suggest seeing a BPI specialist- to rule out the stroke, I would think a Neurosurgeon that specializes in infants, possibly a cat scan could show if there are affected areas in the brain that could show if it was a stroke or not. Good Luck, and let us know how things go

hi

I'm new to the site. I have a 9 year old daughter who was diagnosed with Erb's Palsy due to an injury at birth. She was diagnosed by a pediatric neurologist and placed in physical therapy. Nine years later, she has regained some use of her arm, yet she is unable to touch her mouth with her hand, raise her hand above her head, or reach behind her with the affeced arm. I would like to hear from other parents with similar experiences.

Thanks

Bridget,

Thanks for your reply to my posting.

A few months ago we had e-mailed Dr. Nath and had
prepared a video of Abbie for his review. Then the
stroke theory came up and we pursued that.

I still feel she should be evaluated by a bpi specialist. Her ped still feels she "had" erbs palsy
but is recovered and requires no futher attention.
After the first of the new year my husband's company
will be switching insurance coverage and I will no
longer have to go through Abbie's ped for referrals.

Do you know where I can find Dr. Nath's e-mail again
or the phone number to his clinic?

Thanks!

Carrie

Jamie,

Thanks for your reply to my posting.

I was wondering if your brother-in-law ever researched
his daughters stroke on-line and found a site like this
one for stroke related issues?

Even though Abbie's MRI didn't show evidence of past
stroke that seems like a probablity with Abbie's condition. When she was first evaluated by the neurologist at a few months old he detected a weakness
in her left leg also. That has since resolved as far
as we can tell. (There just seems to be so many pieces
of her condition that don't make sense)

Thanks!

Carrie

Dr. Nath:
email: rnath@bcm.tmc.edu
phone: 832-824-3193

I hope you get some answers soon. Take care. -Tina

Welcome to the site. I'm glad that you found UBPN, but I'm sorry about yoru daughter's injury. I would like to suggest that you post a new message rather than just a response to this message and you will likely get more replies. I do know there are others with children your daughter's age. My daughter, Nicole, is 2 1/2 y.o. and has a total LOBPI. There are drs. who can quite likely help your daughter with the limitations in the function that you mentioned. Also, she is not too old for the surgery that can help with this. We have chosen to go to TCH. You can contact them and perhaps send them a videotape for a free evaluation. If you want to post where you're from, then someone might be able to tell you of a BP specialist and/or a BP support group in your area. Also, there's a lot of great info. on this site in the Awareness 2001 section. Plus, checkout http://www.injurednewborn.com/maia/homepage.html for one family's BP journey and there's also great info. on the TCH site -- http://www.texaschildrenshospital.org -- click on Patient Care Centers - select a center - Brachial Plexus. I hope this helps. -Tina

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hi

I'm new to the site. I have a 9 year old daughter who was diagnosed with Erb's Palsy due to an injury at birth. She was diagnosed by a pediatric neurologist and placed in physical therapy. Nine years later, she has regained some use of her arm, yet she is unable to touch her mouth with her hand, raise her hand above her head, or reach behind her with the affeced arm. I would like to hear from other parents with similar experiences.

Thanks