United Brachial Plexus Network, Inc.

On September 22, 2010 my daughter was seen by her pediatrician because she was having flu like symptoms. Fever, headache, sore throat and sniffles. Her pediatrician diagnosed her as having a virus and suggested rest and fluids. The next day my daughter woke up and had no use of her right arm from the shoulder down. She was taken to a local hospital where for two weeks numerous tests were done to figure out what had happened to her. On October 14, 2009 my daughter was diagnosed with Parsonage Turner Syndrome. She was given predisone to see if that would help with anything, it did not. She was then prescribed physical therapy two times a week outside of school and one time a week in school. Occupational therapy one time a week in school was also suggested. Since April we have been seeing a specialist in Philadelphia, with no change. At her last appointment he was somewhat disappointed as he expected some kind of use to come back. Of course with the dead weight hanging my daughter has extreme sublexation as well as atrophe.

When my daughter was diagnosed with this diseased I was told it was a rare one to begin with. For it to be caused by a virus was even more rare. On top of that, a seven year old having it is pretty much unheard of.

My daughters pediatrician and I have contacted Doctors in Missouri, Boston, Cleveland and Ohio........only to be told they really don't feel they have anything to offer her. This is what brings me here.

As a Mother it hurts me every day seeing my daughter struggle with the things she was able to do before this disease. Getting dressed, combing her hair, taking a bath.......these are all huge tasks for her now. With todays medical technology I find it hard to believe that there is nothing anyone can do for her.


If anyone is familiar with this disease or knows of someone or somewhere we can go for possible help, I would greatly appreciate your input. We are just trying to find an answer for her. Any suggestions would be a great help. At this point I feel like I am walking this path with a blindfold on.

Thank You, Christa

Welcome to the boards Christa.

I'm so sorry to hear about your daughter's arm. I have never heard of this syndrome but I had never heard of brachial plexus injuries until my daughter was injured.

If you read the boards you will find that your daughter will find a way to overcome the challenges she faces. Children are so resilient! It doesn't make it any easier on us watching them struggle though

I hope she isn't dealing with any pain issues?

Many of us feel the same way about treatment -- why can't they fix this in this day and age. The bottom line is the nerves are truly mysterious in many ways. Some kids respond well to some treatments, others don't. It is frustrating! The doctors you contacted -- were they from our medical directory? I'm wondering if you contacted one of the brachial plexus clinics? They might be more understanding or at least willing to take a look.

Please keep us updated on what you find out about your daughter's syndrome and let us know if we can support you in any way.

Kim

EDIT -- I just searched the syndrome online and got this:

PTS, also known as brachial plexus neuritis or neuralgic amyotrophy, is a common condition characterized by inflammation of a network of nerves that control and supply (innervate) the muscles of the chest, shoulders, and arms. Individuals with the condition first experience severe pain across the shoulder and upper arm. Within a few hours or days, weakness, wasting (atrophy), and paralysis may affect the muscles of the shoulder. Although individuals with the condition may experience paralysis of the affected areas for months or, in some cases, years, recovery is usually eventually complete. You can read more here: http://www.healthline.com/galecontent/p ... r-syndrome

Sounds like she may recover at some point.

Christa, I'm truly sorry that this happened to your daughter. It is just unbelievable!
In 2004, I had a case of pneumonia and I woke up one morning and didn't have use of my left arm and I had SEVERE burning and pain. It was just like adults had described it previously - like someone put my arm in a deep fat fryer. I found two things to be helpful for me - heat packs and estim (electrical stimulation) - I had either or going on 24/7 in order for me to maintain my sanity. The other thing I did was work through it -- after some movement came back in I started using it to the maximum and really pushed myself more and more every day. I didn't want my brain to forget I had an arm. I'm a massage therapist and so when working on a client, I really used my left arm as much as i possibly could each time -- it was my therapy. It took about 6 months for resolution to begin. i guess I was luckky - the virus didn't cause too much permanent injury. I have about a20-30% weakness in the left arm most of the weakness is see in not being able to raise my arm well or put my arm behind my back (putting on bras is very difficult). i also do not have pain -- the pain completely resolved itself.

I know of two other children who had brachial plexus neuritis (another name for pts) -- one got it from a chickenpox vaccination and another, I think it just happned from a virus overnight. Neither of their parents show up h ere anymore so I'm not sure what the outcomes were. One chose a heavy duty route of acupuncture and chinese herbs and the other -- well I forgot what the other one did. You can do a search on here for parsonage turner or neuritis and see what comes up - you might find all those old posts.

I would seek out a brachial plexus specialist (there's as list on here in medical resources) as soon as possible so that they can see if there's anything else going on that needs attention. And i would also get your daughter to an occupational therapist to learn one-armed living skills so she can be independent again and find her balance.

Please update us and I will keep your daughter in my prayers.
THINK HEALING!

-francine
(215) 643-5913

Christa,

I know this is years later than your post but I wanted to reach out to you. My 6 yr old daughter has the same exact symptoms your 8 yr old had! She too was diagnosed with Parsonage Turner Syndrome most likely from a virus?! She has had no ability to move her right arm for about three weeks now. We are supposed to start pt if there is still no movement by next week. Do you have any updates on your daughter or what worked for you guys? Thank you. We are also in the philly area.