Brachial plexus injury from meningitis.
Posted: Thu Oct 11, 2012 2:52 pm
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...
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 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. 
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 