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-   -   PFAPA -what? (http://www.healthboards.com/boards/rare-disorders/617151-pfapa-what.html)

walli6 07-12-2008 06:33 PM

PFAPA -what?
 
My daughter may have PFAPA I'm still a little stunned! She has had frequent high fevers that last 3-5 days and have gone as high as 106.5. This started right around age 1. We were told she had a kidney infection, which was treated and then followed up with the reflux test. My doctor has been pursuing bladder infections every time she has a fever episode. The fevers ran about 4-6 weeks apart, but lately have been coming every three weeks like clockwork. She is 20 months now. We were referrred to a infectous disease doctor. He is quite sure it is PFAPA, but is running all the other tests to rule anything else out. This seems a little crazy, my daughter may have a cronic rare disorder that may or may not go away! We've already been told about various treatments - prednisone, removing tonsils, etc. I guess what I am wondering is does this intensify as a child gets older? Right now she gets the fever and feels pretty low, but does not have mouth sores or any of the other symptoms I have read about. She cannot verbalize all her aches and pains yet, so I can't be sure about headaches and leg aches. Are there degrees of PFAPA? Which treatments work best? Just help - I'm relieved that there may be a reason for the fevers, but quite scared for her too.

jenny1011 07-15-2008 06:28 PM

Re: PFAPA -what?
 
We are going through almost the same thing right now with our 16 month old. I can't answer your questions but I can sympathize with you. However, I'm wondering if anyone out there has a child that actually outgrew the fevers and could tell us at what age and how the winding down of fevers took place. What was the pattern like near the end and how old was the child? I'm sure you are wondering the same thing.

walli6 07-17-2008 01:30 PM

Re: PFAPA -what?
 
I would like to know everything about this rare disorder, mostly is it likely that her symptoms will worsen to include the mouth sores, leg aches, vomitting, etc? I spoke with the infecious disease doctor regarding her bloodwork today. He wants to run one test again to rule out the possibility that something else is going on. Also, to see if she cycles again on the same schedule as the last three times. Before the last three her fevers were a little farther part, but still got as high and lasted as long. So, we wait.

francis66 07-18-2008 05:40 PM

Re: PFAPA -what?
 
My daughter was just diagnosied about 2 months ago with PFAPA. Her fevers started around 10 mo. old she is now 8 1/2. When she started we just noticed the fevers every month as she got older she would double over with stomach painabout 2. When she could talk she started complaining about knee head and eye pain , sore throat( white spots on back of throat), swollen glands,she would also vomit with each episode fevers would get as high as 105 . Fevers would last about 4 days then she would be fine the rest of the month. Latley she has been complaing of headaches everyday so we are looking in to that( might bethe Nasonex?) We have been to alot of Doctors and through alot of antibiotics and strep throat tests which were always negative. There is alot of Doctors out there that never heard of this syndrome. He has her on Prednesone during her fevers last month was her first dose.It seemed to help, Im expecting her to get a fever soon so I will see what it does this month. Reading these Health Boards there seems to be a lot of cases the doctor said there was only about 200 reported in the U.S.

jenfly737 09-22-2008 01:15 PM

Re: PFAPA -what?
 
Well we are in the same boat that you and your family are in! We just found out my 20 month old son may have PFAPA. We went to an infectious disease and he sent us the a rhuematologist/immunologist. He ran a ton of blood work wich takes 6-8 weeks to get back. My son started the prednislone but personally I think it makes it worse. His fever goes from about 106+ down to about 101 but the last fever lasted 17 days, he had a week off and this one he has now is lasting 12 days. He recently developed hives ALL OVER so they are going to run another test to rule out something else. Before he started the prednislone his fevers were about every 4 weeks lasting 5-7 days but now they are lasting 12- 17 days and he doesn't get much of a break. The dr. did give a prescription for naproxen and it works well but I don't want to keep him on that too long. From what I understand they sometimes grow out of this by the age of 10 and a tonsillectomy helps almost in all cases. Any other onfo you could give me would help as well. Good luck.

francis66 09-23-2008 06:47 PM

Re: PFAPA -what?
 
At age 5 my daughter had sinus surgery and adnoids taken out. She still got her fevers every month and they were not as long and bad. Then as time went on the fevers started getting longer and temprature got higher. Her doctor mentioned about the tonsils but he said its not a guaranteed fix so that still might be an option. I have read alot about kids gettig there tonsils out and it took away the fever episodes. Did your doctor also look into other Periodic Fevers?

jenfly737 09-23-2008 08:25 PM

Re: PFAPA -what?
 
Has anyone notice the fevers lasting longer than normal with the steroid? My sons are not as high as they were beofre the steroid but lasting much longer.???? Any thoughts?

francis66 09-24-2008 08:01 AM

Re: PFAPA -what?
 
12 and 17 days is a long time thats why I was wondering if they checked for other Periodic Fevers. My daughters usually last 3-5 days. When she was put on Prednesone back in June it helped her symptoms, but a week later it came back again I did not give her the Prednesone for that episode. In July she had a very light fever temp around 99.1 for a few days did not give Prednesone because she didnt want it and episode was not bad.Then in August she woke up with fever and very bad swollen glands in neck. Gave her 30mg it took down her symptoms. She suppose to be taking 60 mg 1st day the 30mg the next two but she says they make her feel funny. So I see her doctor tomorrow so I will see what he says.

walli6 10-23-2008 04:49 AM

Re: PFAPA -what?
 
I have read that steroid treatment can either take the symptoms away or in some cases worsen them. We started our daughter on Cimetadine 2 months ago. I think it is working!! Her first fever after being on it for one month was only 2 days, only 3 high fevers(104 or higher) and they were very managable. Now we are waiting for her cycle to start and she is about 3 days late. This is very encouraging news. Cimetadine is suppose to shorten the duration of fevers, lower the temps, and make them come further apart. We just saw another specialist at the U of M, a hematologist. he checked for an auto-immune disorder and it was negative. He thinks the infectious disease doc. is one the right track. Something in her last round of bloodwork alerted them to check further into cyclic neutropenia. So, she has to have blood drawn twice a week for 6 weeks. They keep telling me we have to rule everything out before we settle on PFAPA. But, with the cimetadine working - I think that is what she has. This all started last November, right after her first birthday at the end of October. So we are coming up on the one year anniversay of her first cycle. Hard to believe we still don't know for sure!

michele34 10-26-2008 05:53 PM

Re: PFAPA -what?
 
I've been reading these message boards for a year and a half now and now I think it's time to give my daugher's story.

My daughter was diagnosed with PFAPA in December, 2007. She is four years old now. The fevers started when she was 18 months old. We saw an immuniologist, infectious disease, and rheumatologist. The rheumatologist diagnosed her with PFAPA. He put her on prednisone for three months. The fevers started coming every two weeks and only seemed to mask it. I was very unsettled about the prednisone so I decided to look into other options.

In May of 2008 we went to a homeopathic doctor. We see her once a month and we're on a homeopathic medicne schedule. All I have to say is OUR LIVES HAVE CHANGED!!!!!! She has had two fevers since June. We are now 78 days with no fever. Before my daughter would go 20 to 30 days between fevers. There is no sign that a fever is coming, her skin feels normal to me. (Before, every time I touched her skin it felt sooooo warm). AND she's starting to get normal colds. This whole time she would never get sick, not even a runny nose. Now she's starting to get colds and we think that's a good sign.

So far this is working for us. So if anyone feels helpless, or they feel they are out of options, here's another one for you to look into. So far it's working. I'll keep you updated.

jenfly737 10-26-2008 06:29 PM

Re: PFAPA -what?
 
Well just when I thought the fevers couldn't get any worse! I think the prednislone has made it 100 times worse but they started my son on cimetidine and they seem to be a little better. The last cycle only lasted 5 days...that's a lot better than 17! HOWEVER he has developed arthritis! The Dr. said it may just be that his previous 2 fevers lasted so long that infection has set in and if so then that is an acute case of arthritis. If it lasts more than 6 weeks then we know it is juvenile rheum. arthritis. I had NO IDEA of all the stuff your immune system is in charge of! We go back on the 29th...wish us luck!

walli6 10-31-2008 04:42 AM

Re: PFAPA -what?
 
It has been almost seven weeks since my daughters last fever. She too has had a normal runny nose/cough cold for the last week or so, such a nice change from the fevers. I'm convinced it's the cimetadine. I touch her forehead everyday several times a day and it's cool, never even a little bit warm. I'm not sure what all the side effects of long term cimetadine are. So that is my next step - to figure out if she can be on this indefinately. I'm interested in the homeopathic approach as well, but have seen nothing on it, only cimetadine and steriod treatment.

michele34 11-01-2008 05:40 PM

Re: PFAPA -what?
 
You're really not going to see anything on it regarding homeopathic medicine. There was just something telling me that there's got to be another way than loading her up on steroids. I would pull up the long-term effects of steroids and I didn't like what I say. I know nothing about that other medicine you were talking about. The medical community doesn't embrace it homeopathy, for whatever reason. This is a natural remedy. As I'm beginning to learn in homeopathic medicine, they treat the person as a whole. They believe that if your body is balanced it will heal itself. We are going to keep her on the homeopathic medicine until she is 6 months fever free, then we are going to start to take wean her off of it. I have to say that her bloodwork looks great. We are now 83 days fever free and no sign that it's coming.

I do have to say the medical insurance does not cover homeopathic doctors or medicine, so you have to pay out of pocket BUT it is a tax write off. It is definitely pricey in the beginning of the treatment, but so far it's well worth the money.

michele34 11-01-2008 05:43 PM

Re: PFAPA -what?
 
I'm sorry to hear the he developed arthritis. My daughter's immuniologist did say that a disease could manifest itself in the fever and then it will show, as in the arthritis. Good Luck.

walli6 11-04-2008 05:30 PM

Re: PFAPA -what?
 
Cimetadine is a generic over the counter antacid pill. It is the generic for Tagament. We crush it and put it in her yogurt or oatmeal or whatever. It really seems to be working. She had a fever yesterday that could have been her "fever" or it could be a bug she has. Now that they are so tame I can't tell the difference. It was six weeks yesterday, so I was thinking it was her fever cycle, but it was just one day. I am trilled the fevers are so much easier and farther apart, but I also feel like I'm waiting for the other shoe to drop. A year of high crazy high fevers that last 5 days and hard to fight has left me paranoid and worried about what is next. Now we just watch and wait.


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