United Brachial Plexus Network

My youngest daughter was born on 5/30/11. Ever since birth she has suffered from more medical conditions than my other two. She was diagnosed with hip dysplasia which she has recovered from after using a brace. She also has severe food allergies that is still on-going. She’s allergic to milk, wheat, egg, peanuts, soy, almond and a bunch of other stuff.

On 12/30/2011, my wife noticed her head was tilted to one side and her right arm doesn’t move. When we entice her with toys on her right side she would reach over with her left arm. We brought her to the emergency room at the Childrens Hospital in Oakland. She was diagnosed with viral meningitis. We are still not positive on the cause of the meningitis, it could be older siblings bringing germs home from school as they had the sniffles at the time…or it could be the flu shot that she received from her pediatrician a few days prior as we later learned the flu shot contained eggs.

Shortly after, the meningitis went away. Her neck no longer stiff and head no longer tilted to one side. However her right arm still didn’t move. Her hand, fingers and wrist worked normal but there was no strength at the shoulder or biceps. The arm just flopped around. It was a strange case for the doctors as they have never seen a BPI caused by meningitis before. They suspected her own body was attacking itself with an overly active immune system. Since there was no physical injury to her shoulder or mechanical damage to the nerves, they thought maybe the outer layer of the nerves was damaged so the signals weren’t getting thru. We were told the injuries were at C5 and C6. Our pediatrician recommended we try oral steroids but that was to no avail.

After a few months of no improvement we were referred to a neurologist at the Childrens Hospital at UCSF. They conducted an EMG test and concluded there was still inflammation at her shoulder and bicep. They concluded after some testing that the signals were in fact getting thru the nerves. We stayed overnight for an IVIG treatment.

A couple more months passed and we went back to UCSF for a MRI. They concluded the inflammation is gone. Yesterday we were there again for a second EMG test. It was to find out whether the nerve/muscles were in early or late stages of recovering. If it was in early stages then there is a chance of more recovery, otherwise the recovery process is done and we will need to look at other methods. After the test we were told there will probably be no further recovery. Other options were electrical stimulation with a machine at home and nerve grafting surgery with a nerve from her foot.

Now we are waiting to hear back from the neurologist whether these options are plausible. It is very heart-breaking for my wife and I to see her with the right arm always by her side. We take her to physical therapy every other week for the last 10 months and the therapist has been optimistic of her recovery. So far she is coming up with ways to compensate. She would tug her shoulder and crawl with her fingers to get the right arm onto a table. She skipped the crawling process all together. Now the left arm now is already stiffer and larger than the right. The idea of this being permanent is killing me. The idea of her having a physical deformity with a small right arm makes me want to cry.

I’m glad I found this board so I can read more about other people’s experiences but at the same time I’m also terrified reading about the physical and emotional struggles with everyday life with this injury.

Sorry for the wall of text...

I can only speak on what you said about a life with a shorter arm, and hope what I say helps?? I have that sorter arm, for 61 years with birth erbs I learned from little the less people focus on my arm the less I thought about it to growing up. But kids and others do ask and still ask but I just tell them I got injured at birth. For me being up front with others kids , adults help to stop further questions which in-turn help me not focussing on my arm ether.
I can respond to your last sentence about experience and struggles
There are so many post with alot of Very hard times with limitation for-sure
But there is a lot more in the real world and post how people do get past there limitation in spite of what usage there left with from birth or latter in life.
You see how people learn to adapt in so many ways and do so many amazing things by trying there way by the ideas they come up with and the sure power we learn from trying and some very Amazing parents that encourage there child to try things there way of learning to overcome what they can. Before my mom died years ago I thank her for never trying to stop me from trying because of my arm. When things did not work out no matter how hard I tried she just told me to try something else and I did live my hole life doing just that It is better to focus on the positive than the negative in life because it good for your head to just try something else. The Quest of finding the right treatment or surgery is a long term issue no matter when the injuries happen ,but coming from no help or hope for my birth erbs my hole life. I really respect what everyone post and the lack of true direction doctors dont seem to give No doctor ever told me of anything could be done for my arm, Ever
To me the absolute truth is the value of the gift of determination to preserver and power how you become a stronger parent dealing with a child with limitation or a child with limitations or a person dealing with or types of injuries latter in life.
The greatest thing we can try to do is posting in the belief that we might help?? and put a little light in a dark time???

Tom

Wow, I've never heard of that happening and I'm sorry to hear about it. I just wanted to let you know that yes, there are some physical and emotional consequences to this injury but it only affects you as much as you let it. My arm only has about half function and is considerably smaller. I've had my injury from birth so I've grown up compensating for everyday activities to the point where I don't even notice. I put my hair up funny, have a planned out approach to getting jackets on/off, and and lift my bad arm to the top of my head and set it there to wash my hair! To me it's not a big deal because it's just always been that way. I've always had lots of friends, played countless sports (I'm I'm pretty good at most of them), and don't let the injury stop me from anything. I've never acted like my arm is any different and as a result I've never been treated like it is. I know that the idea of her struggling with this injury the rest of her life is scary. Just focus on helping her recover, but don't worry too much about the long-term consequences yet! It sounds like she's already improving and not letting it slow her down at all. She will surprise you with how well she adapts and grow up to be stronger than you ever thought.

Help that makes you feel a little better!
-Brittney, 20
LOBPI