I Have A Child With Parsonage Turner Syndrome

I am an ambulance officer and after returning home from doing night shift my eight year old son had been awake and disstressed with pain in his right elbow for hours. Panadol did not ease the pain, burning and stabbing is how he disscribed it. The following day I took my son to the doctors, they susspected a fractured elbow. Xrays were done and showed no abnormality to the bone structure in the arm. The doctors still suggested that it could be a hair line fracture, so thats what it was treated as. Two weeks later his little arm had no improvement and he had started to loose sensation in his fingers and his arm in places. The pain was unbearable to watch him suffer. So two weeks in I took him back to the doctors and they then suggested that it could be tennis elbow and golfers elbow, damage or strain to the ligaments. So one more week went by and his head started to rest on his right shoulder, so he had a dead looking arm and a floppy head. It became so frustrating for me to watch my son and not know what was wrong. I thought that perhaps he could of had a stroke. When he began to loose his appitite and loose weight, plus the pysical appearence he had trouble swallowing. We struggled along at home for the next few weeks, we didn't sleep, we got more frustrated, work and school suffered. I then decided to take him to the childrens hospital whom thought there was something serious going on. They immediately starting investigating and testing. It took Two more long painfull weeks before we got a diagnosis. I felt relief once we had a name for what was happening but by now, six weeks later my son had developed the condition bilaterally. So now both arms are affected and he lost eight kilos in weight. I guess I could go on and on but the reason behind my story is I want to know if any one else has found this condition frustrating, painfull, have you recoverd. IS THERE ANY OTHER CHILDREN OUT THERE WITH THIS CONDITION! I have been informed by the hospital that it is a rare condition in adults and even more so in children. 

breebs breebs
31-35, F
4 Responses Aug 1, 2010

My son is 12 and has been sick for a month, and the physical therapist he saw for he first time today named it. All the Dr's have been baffled so far. He too has lost around 15 lbs, has horrible pain, especially at night. Thank God we now know what it is, now we just have to figure out how to treat it.

My name is Madalyn Vaugh. Two years ago I was diognosed with a really bad infection called MERSA in my left arm. Just so everyone knows , i'm left handed. I struggled for about a month before I went to the hosptial. I went home on a picline(portable IV) for about six weeks. Two or three months later I was complaining about a sharp burnning pain in the same arm. I was taken back tp Riley two days later because my parents were afraid my infection might have come back. We spent about two weeks there. We took many tests and they still didn't know what was causing this pain. I finally had nerve test and they told me that I had damage to my C4. They labled as Parsonage-Turner-Syndrom. Theytold me that ist is really rare for kids to get it. They also said that it would only take two years tpdjjdn recover. I just got out of tje hospital again d they told me that it just was another cause of that. Noone at the hospital even knew what it was. They all had tp look it up. That's hpw rare it is. I now have to go through theropy. I get the pain. It is very stressful. I would know, I went through it myself. The dpctors told me that I wpuldn't ever been able to use my elbow again. I fought hard and npw I have full mobility back. (: Just keep fighting. It will get better.

My daughter (12y/o) has recently been diagnosed with Parsonage Turner Syndrome in her right shoulder. She has suffered pain for 4 months prior to the diagnosis. She experiences numbness and tingling in her fingers and elbow and her shoulder blade wings out and clicks when she lifts her arm. She is in pain day and night and is taking seizure medication as this works best apparently. We are awaiting results of an MRI which she had 2 days ago and she is currently seing a Neurologist. Has there been any improvement with your son?

First off i hope you the best.. It is indeed rare and most recover in 5 yrs ,, however some have recurring episodes.. i was diagnosed at 22,, and am now 61,, i have had many episode you may also develop many other problems,, contavct me if you have a question.