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PFAPA : Marshall's syndrome? Anyone else?

post #1 of 19
Thread Starter 
My son is 6 and started kindergarten this year. He has gotten sick at least 9 times this year alone with a fever and little other symptoms. It looks like a pattern of almost 5-6week spans before he gets ill again. I believe that he used to get the same thing with less frequency starting about a year or two ago. I am considering PFAPA and am wondering if anyone else her has a child with it or could shed some light on the syndrome before I go into the Dr's office again.
Some info if you need it:
http://www.orpha.net/data/patho/GB/uk-PFAPA.pdf
Thanks
post #2 of 19

RE: PFAPA : Marshall's Syndrome? etc.

Hi,

I just found your post doing some (more) research on PFAPA. My son (Age 31 months) was diagnosed with it at around 5 months.

It's a disorder named after its symptoms because the cause of it has not been found. Kids with this disorder get sick for 3 to 6 days approximately every month (4 to 6 weeks or so). Symptoms include recurrent episodes of high fever (up to seizure level) with aphthous-stomatitis (mouth sores) and pharyngitis (sore throat with redness). Many kids have additional symptoms such as stomach pain and upset, change in skin texture, and pain in the joints. The mouth sores are invasive and can cause a child to avoid eating for days.

The current literature indicates that PFAPA affects children in early childhood, usually starting at age two to four years, and that episodes usually decrease in frequency and resolve around age 10. However, it has been my experience and the experience of other parents in the support groups that I am a part of, that most doctors have a difficult time diagnosing it. In addition, it has returned to some children who were thought cured of it. So, we believe it can start earlier and last longer than is commonly reported.

As I mentioned, my son, Aaron, started having his fevers at about age 5 months. He is now 31 months old and still experiences the fevers. Unlike most parents, I was lucky to have him diagnosed relatively quickly. I kept a journal of his illnesses when I started noticing the same thing reoccurring (something I highly recommend all parents do when their kids are sick a lot), and brought my observations to my pediatrician—who took me seriously and didn’t dismiss my concern even though I was a new Mom.

My son went through many examinations and blood tests. He saw about a half-dozen doctors before he was finally diagnosed by a rheumatoid specialist at the Cleveland Clinic. Most parents go through much worse as befuddled and uninformed doctors and emergency room workers guess at the problem, continuously drawing blood, administering shots or other forms of medicine. I’ve heard of a case where it took years for a child to get diagnosed. In the mean time, the kids get poked, prodded and frightened while their terrified parents heard one misdiagnoses after another. My own son has been through so many examinations, shots and blood tests that by 18 months he no longer cried from a needle prick.

Since they don’t know the cause of PFAPA, the treatment is a strange guessing game. Somehow doctors discovered that prescription Tagamet helps control it. Steroids are also used—even in the youngest ones. Somebody discovered that prescription Singulair seems to help. A large number of kids seemed to be cured by having their tonsils removed (even though the tonsils are declared NOT the cause). Although, recently some parents have come back to the support group saying that the PFAPA came back even AFTER the surgery.

On the alternative/holistic treatment side, some parents have found that vitamin C therapy works. Others have found relief for their kids with dietary changes and even chiropractic manipulation. For my own observation, I’ve noticed a greater number of successes in the alternative treatment support group than in the traditional support group—so you may not want to give up on that.

The medical community calls PFAPA “rare”, but there seems to be many folks in the online support groups. Plus, I research this online every couple of months and each time find new stuff. It almost seems as if this rare disorder is becoming more prevalent. Either that, or more people are talking about it. either was, there is info out there.

Good luck. I hope you hear good news!
post #3 of 19
According to my experience and our pediatrician, kids this age can get up to 8-10 viral illness a year. If you divide that out, you get to a cold/virus every 4-6 weeks!

WebMD states says that kindergarteners can get up to 12 in a year - I think that's because they're exposed to so many new germs, especially if it's their first exposure to "group care". http://www.webmd.com/cold-and-flu/co...children_colds

I know that for my kids, when they started daycare, they'd get a cold about once a month for the first year. The second year it was about every 6 weeks. The third year it was much less than that. Our ds is in 1st grade and has been sick 3 times this year (only twice where he really had to stay home, the third was over a holiday weekend).
post #4 of 19
Please post or PM the support group info. My neighbor's child was just diagnosed with this on Tuesday.
post #5 of 19
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
post #6 of 19
Hi,
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?

Thanks
post #7 of 19
I just researched PFAPA last night trying to determine why my 5 yr old has had monthly fevers since he was at least 3, maybe before then. I started documenting every episode when he was 3. And it always is sore throat/headache. I've taken him for strep tests and it's always negative. He feels relatively well during the episodes as long as his fever doesn't go too high. Usually it is right around 102. Lasts for 5 days. I'm really thinking he might have PFAPA, how should I go about getting a diagnosis for him? I don't want him poked and prodded to death.
post #8 of 19

Pfapa

My son has been having recurring fevers about every three weeks for the last few years. It took awhile for me to see the pattern, kept thinking it was related to allergies.... or the latest virus. Realized over time that it was neither. He was mis-diagnosed with strep a few times b/c of the aphthous ulcers in his throat (although the strep tests were negative) We have had one blood test done during a fever episode that came back negative, for viral etc.
I started researching re-curring fevers and came upon this. It fits his symptoms to a T!!!
I have a few questions, maybe someone can offer some advice?

1) My son started Kindergarden this week, and the second day, today spiked a fever. So here we go, second day into school and we have our first absence, obviously this will be a recurring theme. How do you handle this with a child that is in school? He will exceed his absences... Dr. so far is not on board with this, we will see how it goes, I just have no idea how to deal with the school issue.
2) Anyone have suggestions for a holistic way of dealing with this or have any success stories in that area? Chiropractic is my first thought.

Thanks, It was so helpful to see all these posts and realize I am not the only one. I was also somewhat relieved. I was having visions of a brain tumor (the school nurse suggested a CT scan!)
post #9 of 19

update to PFAPA story

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.
post #10 of 19
Quote:
Originally Posted by 3DOLPHINS View Post
Hi,
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?

Thanks
What happened? Did the fever stay away?
My daughter just started her first dose of prednesone tonight.
Please let us know!
Thanks
post #11 of 19
Quote:
Originally Posted by mommyto4boys View Post
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.
How are the episodes doing now? Have the fevers come back?
Thanks
post #12 of 19
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
post #13 of 19
Quote:
Originally Posted by mommyto4boys View Post
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...
post #14 of 19
Quote:
Originally Posted by ma2five View Post
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...
So while she was on the prednisone...it stopped the fever without Motrin for four days, but you stopped the prednisone and it immediately came back? This was the first time you tried prednisone, right? Did you see any behavior or activity differences in her?
post #15 of 19

Just found out

My pediatrician just told me today about this PFAPA syndrome. I have never heard of anyone getting this. I was told it could be hand-foot-mouth, or herpes. This sounds 10 times worse. My 3-year-old just had his 3rd fever in 3 months and it has been agony to watch. The only thing that helps is ibuprofen. He gets these sores on his tongue and he doesn't want to eat. I don't think I understand the seriousness of this, but after reading about how parents have delt with this for years, I now feel thoroghly depressed. I guess it doesn't help that I'm 8 months pregnant. He was just completely healthy before and now it seems like it's just one thing after the other.
post #16 of 19
Hi Kathrynt--

It can be overwhelming sometimes dealing with your child being sick monthly or even more often for some, I definately sympathize with you. My DS has been fevering since before he was 3 and he is 5 now. We've never had an official PFAPA diagnosis, but only bc I don't want to do the work up. The good thing about it is (in our case anyways when they get older the episodes are shorter (4 days now) and his fever is lower. Also I think most PFAPA kids are generally otherwise very healthy. My DS has never had anything really fever wise that wasn't the PFAPA type symptoms. I am really anti fever reducers in general but for a PFAPA kid, I've found it's the only way to get them through the episode with minimal disruption to their lives. Hugs, there's a lot of us dealing with this. Also there is a PFAPA group on yahoo.
post #17 of 19

Need info and support for PFAPA

Hello everyone. I am new to the forum. Never done this before but I need a little info and support. After months of aggravation, my son's ped said she thinks he has PFAPA. Which is in some ways a slight relief. She drew blood for more tests so he has not been clinically diagnosed. But my gut is telling me this is it. I am fortunate from what I have read that my ped had even heard of this disorder, however, she said she really was not all that informed about it and I should do some research for myself. We have a recheck appt in a few weeks. So hopefully between now and then I will have srmed myself with more knowledge. My son is going to be 2 this week-Jan 14. The fevers have been going on for the past year. Every month. Swollen lymph node, mouth sore, and of course the high fever. My ped suggested giving him prednisone (pretty common treatment from what I have read so far huh?) It worked like a charm for the fever. Within a few hours he was acting like his wonderful self laughing and playing with little brother. My concern is the more frequent onset of subsequent fever after steriod treatment. I guess we will find out more in the next few days and weeks as blood tests come back and we see the ped again. I just hope he is well for his birthday party this weekend. I would love to talk with others who are experiencing the same frustration/relief. Please feel free to email me.
post #18 of 19

Hi all,

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.

post #19 of 19
On the alternative/holistic treatment side, some parents have found that vitamin C therapy works. Others have found relief for their kids with dietary changes and even chiropractic manipulation. For my own observation, I’ve noticed a greater number of successes in the alternative treatment support group than in the traditional support group—so you may not want to give up on that.

 

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!

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