I too have an ongoing battle with PFAPA I would like to share.
My 3 year old boy was experiencing all of the symptoms of the syndrome PFAPA, aka: Marshall’s syndrome.
He was a little over 1 year old when he had his first episode. Very high fever, glands so swollen and his throat was so sore he could barely swallow. He did not have the mouth ulcers at the beginning, but he did develop that symptom later on. We took him to the doc and immediately they thought strep throat. It looked like strep to them and even had the nasty puss in the back of his throat that is common to see with strep. They almost treated him for strep without even doing the culture or quick test....which came back negative. We left that day with the thought that this was just a viral throat infection and should get better on it's own...Wish I knew then what I know now.
After 3 more visits to docs office for the same thing every four weeks we were really starting to get concerned. One of the pediatric doctors in his group diagnosed him with PFAPA and basically told us that there was nothing to do for it. No one knew why it happened or how to cure it. There were a couple of choices of medication that we could give him to "mask" the symptoms, but nothing to cure it. My husband and I decided that the medications, one being Prednisone, may mask the symptoms...but could also have a long term effect on the child. If you have ever been on prednisone or seen anyone on it...you understand. And in my opinion, giving a child at that age a monthly dose of it for who knows how long was out of the question.
I was determined to figure this out! How frustrating it is to not have an answer.."How can I help my child?" I quit taking him into the doctor every month, they had seen him and his throat enough times and the strep test continued to come back negative every time. All of the studies and research I found seemed to indicate the same thing. There was not any long term side effects on the child and they all seemed to outgrow it. I was willing to try to let him outgrow it...but after two years of seeing him this way, just tore me apart! I had to help him!
I read a lot of articles and case studies where a tonsillectomy was a cure...still no one knew why because the tonsils pretty much always came back healthy. I found an ENT in our area that had seen a case himself one time before and actually preformed the tonsillectomy and witnessed the child get better...After a couple of consult visits with him, I was feeling very optimistic.
My son had his surgery last Friday July 11th and he is still in pain from the surgery...I am hoping that all of the throat pain will just be a memory from now on. Time will only tell...I also found this article in the Washington Post yesterday and thought maybe it is a sign...Anyways, I really just wanted to share it and my story, hopefully it will be some help for others in the same situation.http://www2.journalnow.com/content/2...nds-re/?living