Some info if you need it:
I want to know if I am on the right track with the Marshall's syndrome diagnosis with my son. Here is a little background. He is the last child of 3, I noticed when he was a baby that he did get fever blisters when ever he got a fever. I however did not notice the frequency in which he got these fever blisters. I will say that he was sick a lot but due to the fact that he is the youngest and the older siblings would bring home virus I never thought to question when he got sick or had a fever. I did not take him everytime he had a fever because when I would take him the doctors would tell me that it was a virus and it has to run its coarse. When he was about 3 years old he had an upper respitory infection and the doctor heard wheezing which they perscribed prednisone and a nebulizer with albuterol. Now where the doctors heard wheezing I heard none, but the fever went away and so starts another day. We had albuterol left over so when he would start with a runny nose and a little cough I would give him the albuterol to help with the cough but then I stopped doing this because I did not want him to become dependent on the nebulizer and then get asthma as a result. So my son started school last year and of coarse I started to notice that he was getting sick at least once a month with high fevers and a lot of red sore throats they would do the quick strep and it would come back negative so I thought he was getting sinus infections because I suffer with them on a seasonal basis so the doctors went with this and would perscibe penicillan which he then became allergic to so then the drug of choice was zithromax. Six months after school started and him getting sick every month I finally got tired of going back and forth to the doctors and the excuses they would give me. Being that this is my third child I am not going to accept those excuses that it is okay to be sick this often, and started to question the doctors and writing down when my son got fevers and what his complaints were. He complained of nothing and always looked fine! He just had high fevers and a red pussy throat. I was watching T.V. and mystery diagnosis came on and a child with most of the same symtoms as my child came on and I asked my dr to do a calcium test to rule out A.P.S. an autoimmune disease. They reluctently did this and his calcium was fine. I went online under web m.d. and I found nothing. Then I took it upon my self to go to what I thougt was an infectious disease physician, which he turned out to be a general phsician, and I got the same excuse from him that I got from my primary physician that it is normal to be sick at least 10 times a year. So then I asked my primary about sickle-cell and the doctor squashed that because he tested fine when he was born. So I went on google and put in fevers and found information about Marshalls syndrome and others but the others did not fit what my son has. So I asked my doctor about Marshalls syndrome the last time I went to her on 07/15/08 and she didnt think that this was the issue but referred me to an ID physician at CHKD (childrens hospital of the Kings Daughter). After one visit she thinks that Marshalls syndrome is likely but would like to do a couple more tests but these tests need to be done when he has a fever and she would like to see him also. I went to them on 08/11/08 and my son was healthy but like clockwork 29 days later from 07/14/08 he got a fever on 08/12/08 so I went back to the ID dr and got more blood taken. She tells me that the other diseases dont fit with him getting sick now and Marshalls is now #1. She gave me a percription for prednesone. I gave it to him at 4:30pm and his fever should have spiked back up at 7:00pm and it did not. Now I am worried? Does it work that fast? If it dont work that fast am I on the right track? Could some one PLEASE help me put my fears and worries aside?
I am very happy to say that my little guy has been fever-free for 2 of his scheduled episodes!!!! I am not sure if this means we are done with PFAPA/Marshall's syndrome for good here or anything, just sharing my joy!
His tonsillectomy was on July 11th and he would have been due for a second episode this past weekend...
I just want to say that after searching for a couple of years for alternate ways to cure/help him...every day I am more and more confident in our choice for the surgery. To all mothers out there with children experiencing these episodes...hang in there!
If anyone has other ways to share that stopped these episodes for their child other than surgery, I would also love to hear those stories. I am consistently looking for more information about this syndrome, but most of what I see still shows that surgery has been the most effective to stop it...but no doctor can say why this is.
Does anyone know of a child that has had these episodes later than the last couple of decades? Why is it that we are seeing so many more of these cases now and not 100 years ago? or did we see it then too and just thought it was a "sickly" child?
Curious if environment plays a role in it.
No fevers at all...knock on wood! We have not seen an episode since the surgery. So after two years of these recurrent episodes that were like clockwork...I could tell you the time of day they would begin most of the time...we have seen nothing! No fevers, no swollen glands, no sore throat, no mouth ulcers. Nothing but a happy little 3 year old
That is wonderful! I'm so happy for you and your little one! Please keep us posted as time goes on.
It feels like living in a fever nightmare, we are shooting for the surgery but doc says it's down the road...
My daughters fever came back last night, but only 102.5 ("only" but motrin brought it down to normal (this is not normal for her) so the prednisone stopped the fever for 4 days & now it's back, but not as bad as her usual... hardly worth risk of giving her this medicine...
just hanging in there...
I just wanted to share a bit of our experience with PFAPA. My daughter is almost 7, and has been having fevers every 2-4 weeks since she was 1 yr old. They often included a very high fever, very swollen lymph nodes, exhaustion and vomiting. We did not get a positive PFAPA diagnosis (from a rheumatologist) until she was almost 6.
We have tried chiropractic, homeopathic and gluten free, vitamin C, but none of those things did much, though they did seem to help with certain things, for example the homeopathic seemed to stop the vomiting.
Recently, however, we started the Auto Immune diet...no eggs, dairy, nightshades, gluten, sugar. We do include white rice, seeds, and nuts in our diet though. Since starting, my daughter has now been fever free for 8 weeks, and not only that, since beginning her lymph nodes have been normal size (they are usually swollen all the time) and she has sooo much more energy.
Needless to say, we are very excited, and wanted to pass along this info.
Good luck, I know this is tough, and my heart goes out to all the parents who are dealing with it.
Can you point me to some of the places where people are talking about alternative/holistic treatments? I am working with our chiropractor to help my daughter with PFAPA and I am desperately trying to find more information from a holistic approach. Thanks!