United Brachial Plexus Network, Inc.

My name is Krista, and I'm a 27yr old SAHM to a wonderful 3 year old girl.Right now I am feeling very confused, worried, and about a million other emotions.

My daughter's left hand has always been weaker than her right. At every checkup I mentioned it to the doctors, who always said "OH, she will grow out of it, she is just obviously right handed."

Finally, at her 3year check up in September, I was more firm, and told the doctor, "There must be something wrong, this is affecting her confidence and causing frustration for her when she can't do things".

The doctor didn't even examine her arm or hand, and immediately gave us a referral to a physical therapist (we are military, so this is all through naval hospitals). The physical therapist immediately referred us to an orthopedic therapist. We had our first meeting/evaluation with her on this past Tuesday. She told me that to her it looks like Erb's palsy and because of her hand maybe Klumpke's palsy.

I immediately started googling, which is how I ended up here.

I assume that my next step must be to take her back to our primary physician to try to get her "officially" diagnosed? And then what? I have no idea what to do. The OT said that she can't really provide a diagnosis or prognosis because she is not a doctor.

I'm terrified and beyond worried about what my child is going to have to go through. I'm afraid that if our doctor's missed this for so long, how am I supposed to get her the best possible care? And if this is the result of an injury that occured at birth, why didn't the doctor's see it then? Maybe we could have done something more had we known sooner... There were no complications during delivery, at least not that we were made aware of, and she only weighed 6lbs at birth. The OT said that is the only thing that doesn't fit with saying that my daughter has Erb's palsy.

So. Here I have rambled on and on. I'm sorry. I don't really have anyone to talk to.

Krista -

Welcome!

Don't worry one bit about rambling. I have rambled about my own experiences on more than one occasion. We ALL ramble. The people here UNDERSTAND and have been there! We are - I say modestly - a pretty great group of people to talk to!

Remember, there are NO stupid questions. Ask anything and you will have a wealth of replies to help you sort your way through things.

I can not speak to your situation directly as I do not have a child with Erbs. I was the one injured and had only moderate follow up as a child. (41 years ago there just weren't the treatments available that are out there now.) BUT there are a lot of parents out there who can help and I am sure that you will be inundated with information soon! (You can also search the boards or just browse for topics that interest you.) You will need to find a BPI specialist for your daughter and I know that the parents on the boards can help you find your way!

Lisa
41, Left OPBI

P.S. Where are you stationed? Just curious. My dad was a Navy vet and I lived for a while in Norfolk, VA.

Hi Krista,

sorry to hear that your just finding out about Erb's Palsy/ BrachialPalsy. My daughter 6 months nor has Left Obstetric BPI and she see's Dr. Nath. Although there are plenty physicians out there that you could refer to, Dr. Nath is the opne I chose for my daughter he is great and all you hav eto do is send him a video of your daughters hand movement (Does she have arm movement? How was her movement at birth?) and he could give you his observation from there. Also I've heard great things about Dr. Kozin at Shriners so like I said just start somewhere and Dr. Nath is great his number is 713
-592-9900 and web drnathbrachialplexus.com,

It is simply impossible that your child's weak hand is due to Brachial Plexus Palsy that has been missed all this time. That is not the way a brachial plexus injury presents itself.

If your child had a severe enough injury that her hand was still affected at three years old, her hand and probably most of her arm would have been completely paralyzed for a period of time immediately after birth and probably for several months or even longer. If, at three years old, you are seeing a mostly healed RESIDUAL deficit from a brachial plexus injury, that injury would have had to be VERY SEVERE initially. There is simply no way you or any doctor could have missed it.

I would absolutely demand a referral to a neurologist. She should have a full neurological workup and possibly spinal cord studies and other things to try to determine the source of her weakness. A pre-natal stroke and/or slight hemiplegic cerebral palsy strike me as the most likely explanation, but it would take an expert to diagnosis. But you have to push for the proper testing to find out.

Getting a proper diagnosis will guide treatment and determine what sort of therapy might be most effective. Don't settle until you get a real diagnosis.

Kate

Hi Krista,

I am a new dad with a three week old who has Erbs/ Brachial plexus injury. One thing I am finding out is many Doctors are NOT familiar with these types of injuries.Our Orthopedic Doctor referred us to Mayo in MN. You said you go through the Navy hospitals. You may want to start looking elsewhere for a specialist. Only a hand full of states have Doctors that specialize in this. It would be worth checking the resource link for a specialist.

Hi Krista,

I was just logging on to post something nearly identical to what Kate wrote. There is no way you (or your daughter's doctors) would have missed a completely flail arm. Absolutely no way. A brachial plexus injury - even one that is transient - is almost impossible to miss at birth. If your daughter was able to move her arm after her birth, she did not suffer a BPI.

I know you must be frustrated right now. It can be so difficult to find good care for our children. I second Kate's advice of demanding a referral to a pediatric neurologist, and I wish you great success in finding out what is going on with your daughter's hand. And also great success in finding good treatment for her.

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mica

Krista, I have to say that I feel for you !!! I am a former military wife, my son Brandon was born over 11 years ago with a BPI. I don't think the doctors missed anything, I think they wanted to miss it. If your child was born at a military hospital(and you being AD I would assume that she was) they are doing the govermental cover up. Just like they did with Brandon. But I knew better and met a wonderful woman who helped me through it all because her son was born six months earlier at the same hospital with the same thing. Pediatric Neurologist a MUST,, but you want a PRIVATE one, not one attached to the military hospital at all, they are already covering their butts, they will continue to. Get a private consultation. I know you don't amek much money, BUT, you have to !!!! Call TRICARE and see what they will pay for and what the cheapest way is for you to go, I feel for you, I really do. The hospital did not see it my way, till I hired a lawyer and threw the media at them, and then things changed.

This is a great place for support. We have been out for 8 years, so I don't know my way around the military like I used to, but do what you need to do for your child !!!
GAYLE mom of Brandon 11 ROPBI

Krista

I agree that it would have seemed you would have noticed Erbs palsy before now. I woudl also caution that although Physical therapists and Orthopedic therapists know their stuff, they are not the best diagnosticians. It is too bad your regular doctor passed this off to someone else like that.

Not that I know any more than anyone else, I will throw one more idea into the mix. There is something called Neuralgic Amyothrophy, which I know I have. It also has an inheritable version which I think I may have, although the proof has not happened yet. It generally can impact strength that may be noticed as weakness on one side. It can impact the strength and dexterity of the hand or shoulders or both similar to Erbs Palsy but without the traumatic cause. It can impact people of about any age.

Gayle,

I don't doubt that if this was a BPI the doctors in the case would certainly be motivated to cover it up. But this description is of a child who has always been WEAKER in one hand. Not a child who went from near total paralysis of the arm, progressing through watching for the slightest hint of movement, to finally seeing muscle groups coming in but the hand never fully recovering. THAT describes a BPI severe enough to have residual deficits three years down the road.

There are a lot of things out there that can look like an almost fully recovered brachial plexus injury. But for BPI to be even considered as a diagnosis, the initial appearance of the arm and the evolution of recovery has to match what a traumatic nerve injury looks like. In this case it simply does not.

Kate

Kate,
They sat there and told me that there was nothing wrong with my child's arm that it was all my imagination and I was being paranoid.

Gayle