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    Old 08-10-2006, 08:41 PM   #1
    MelFly05
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    Re: PFAPA or Periodic Fever Syndrome

    My 15 month old has been having these episodes of fever since she was 2 months old. We were always told it was viral. Melody's situation is very similar or the other children except that she statred very young. The episodes last ot 4 -5 days, with a temperature of 105 every 2 weeks. She seems achie, but can't tell me what hurts. I have not seen any sores in her mouth, but I do notice when she tries to suck on her bottle she screams in pain. This led us to belie this was due to teethin, but this was just too coincidental at the end of each episode. I have been push with all the documentation I've done. I keep a journal of for Melody on each episode and doctors visit. She has had some test done by every type of doctor and now the diagnosis is between PFAPA and FMF. What is the difference? All the cases metioned here are children experincing periodic fevers. Has anyone hear of children that grow out of? What it life like for them after?

    I will keep all these kids in my prayers and I hope to hear from someon.

     
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    Old 08-14-2006, 08:40 PM   #2
    thedataman
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    Re: PFAPA or Periodic Fever Syndrome

    Hi this is my first visit to this board, so please be gentle if I am posting this question in the wrong area!

    I have a 4 month old son, who up until about the end of June has been relatively healthy. Sure he gets colds, croup, etc....but nothing really serious.

    About the end of June, just after preschool had ended he came down with a fever. About 104 - 105, and had a fever for about 4 days. This started on a Friday. He had no other symptoms, except for swollen glands and a head ache. His demeanor was great, his appetite was fine, was drinking fluids, etc. It was almost like he did not ever have a fever. At that same time my wife had Strep, so our Pediatrician prescribed Amoxicillan as the thought was that my son may also have had it. Then, exactly 2 weeks later, my son got another fever, 104 - 105. It lasted 4 days again, same thing, same symptoms (swollen glands and head ache). Had a strep test, it was negative. His glands were again swollen, but he seemed ok...he was only a little out of it when not on Motrin or Tylenol. The fever went away.

    The 2 weeks later, my son again got a fever, again on a Friday 2 weeks to the day. My wife and I had enough and insisted that something else was going on to our pediatrician. She had blood work for Mono, Anemia, and Lead. The tests came back that our son was "slightly" anemic, and the Dr. attributed this to the fact that our son was a milk lover, and went through about 1 1/4 gallons of milk a week. She put our son on Iron drops and for the last 3 weeks, he was a changed boy. His milk intake is down to 2 glasses a day (maybe about 16 ounces). His diet has been great, he stays away from candy for the most part, eats vegetables regularly, meat, chicken, etc.His energy level was great, no headaches, it was great. Then it happened, 3 weeks to the day, this past Friday, BAM - fever of 103, swollen glands like a golf ball, and headaches.

    We called our pediatrician and were told that she sees this all the time, and that it was nothing to worry about, that he may just be getting viruses this often and that it takes 3 - 4 days for the virus to move through his system. But I mean come on....a virus with no other symptoms, no runny nose, no loss of appetitie, no other symptoms expect a headache, fever and a swollen glands. I am ****** that she discounted this as a normal every day occurance? I am concerned that we may be missing something, or that she may be right?

    Not sure what to do at this point? How do you answer a 4 year old when he asks why he keeps getting sick?

     
    Old 08-17-2006, 02:49 PM   #3
    PatriciaB
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    Re: PFAPA or Periodic Fever Syndrome

    Hey Dataman! As the mom of a 13 year old boy who has lived with these episodes since he was 6 months old, I'm no expert but I've learned alot.

    There are several causes of the periodic fevers, several possible diagnosis but the main ones are Pfapa, cyclic neutropenia, plus the more rare genetic disorders, FMF, Hids, and Traps. Pfapa is diagnosed usually after all of the others have been ruled out. It is difficult to live with but the good thing is that it will be outgrown! I don't know alot about the neutropenia but I know that weekly labs for 6 weeks in a row will diagnose.

    The other 3 are genetic disorders with varying degrees of rarity and various, disease-specific treatments and they will not be outgrown. More and more is being learned about these diseases every day and genetic testing can be used to diagnose but until more mutations are discovered, results may show as negative but actually be positive. Crazy huh?

    My son was diagnosed as having 'Clinical' FMF because he has always tested negative for the known mutations but his symptoms fit plus he responds well to the only known effective medication for it.

    Now, armed with this info, feel free to ask anymore questions or look these up on internet yourself.

     
    Old 08-22-2006, 04:22 AM   #4
    Alek_T
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    Re: PFAPA or Periodic Fever Syndrome

    Hi, I'am from Serbia and I have a 3 year old who has the symptoms, but has not yet been officially diagnosed with PFAPA. He has getting high fever every 3-4 weeks for more than a year now, and I am desperate to help him.
    But the reason for me posting here is that I'am very concern about drug Prednisone that is beeing prescribed for this condition (note that I use the word "condition" rather than "illnes"). The reason for my concern is an obvious one. Ever since I found the exactly same symptoms my son is having are now called PFAPA, I was surfing the internet in search for answers. EVERYWHERE is this condition described as completely BENIGN, and that prognosis are exellent. The only problem is that it may last for years, but eventually it wil resolve by itself without any long-term sequelae.
    Prednisone is corticosteroid and as all other corticosteroidis is very serious an extremly dangerous drug. As many of you who posted here have mentioned, all it does is merely prolongate the "healthy" periods. Then why shoul'd we poison our children with corticosteroids and ruin their overall health? Prednisone affects how immune system works thus not letting child (in this crucial period, 3-5 years of age) to develop it naturally, which in return can (and will) have effect on his/hers health later in life. Please click on following link to learn more about it:
    [url]http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601102.html[/url]

    Although I myself am not a doctor, my fater is a EN&T speciallist with huge experience, and to make long story short - PHAPA, eventhough frustrating for both child and parentsis is not something to be VERY concern about .

    I don't want to make fun of it, but on the brighter side it is like that old saying: if you don't treat it, it would last 7 days, but if you treat it would be gone in a week. So please consider future health of your children before stuffing them with corticosteroids!

    Last edited by Alek_T; 08-22-2006 at 04:24 AM.

     
    Old 08-22-2006, 10:39 AM   #5
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    Re: PFAPA or Periodic Fever Syndrome

    Quote:
    Originally Posted by PatriciaB
    Hey Dataman! As the mom of a 13 year old boy who has lived with these episodes since he was 6 months old, I'm no expert but I've learned alot.

    There are several causes of the periodic fevers, several possible diagnosis but the main ones are Pfapa, cyclic neutropenia, plus the more rare genetic disorders, FMF, Hids, and Traps. Pfapa is diagnosed usually after all of the others have been ruled out. It is difficult to live with but the good thing is that it will be outgrown! I don't know alot about the neutropenia but I know that weekly labs for 6 weeks in a row will diagnose.

    The other 3 are genetic disorders with varying degrees of rarity and various, disease-specific treatments and they will not be outgrown. More and more is being learned about these diseases every day and genetic testing can be used to diagnose but until more mutations are discovered, results may show as negative but actually be positive. Crazy huh?

    My son was diagnosed as having 'Clinical' FMF because he has always tested negative for the known mutations but his symptoms fit plus he responds well to the only known effective medication for it.

    Now, armed with this info, feel free to ask anymore questions or look these up on internet yourself.
    What specialist does your son see for his fevers? My pediatrician is referring us to Pediatric Infectious Disease because he suspects she has a fever syndrome, but which one we do not know. Her fevers do respond tremendously to the steroids. An episode that used to last 6 days now lasts 12 hours.

     
    Old 08-22-2006, 08:22 PM   #6
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    Re: PFAPA or Periodic Fever Syndrome

    My 9 year old still gets the fevers and I have to say that the dangers of a single monthly dose of Prednisone seem a small price to pay for the normalization of her life. It took us 4 years of pediatricians telling me that "kids just get sick alot" before the disruption to my daughter's life of being down 4-5 days every month took its toll and I began looking for better answers. Everything from her learning to read, her piano lessons, her friendships (due to more missed birthday parties and play dates than I can remember, including her own!) had been affected.

    I have a new question for any of you PFAPA parents out there. My 9 year old hasn't outgrown the condition, and now she is starting to have almost daily headaches. She's always had headaches with the fevers, but these are much more frequent. The pediatrician evaluated her and said they appear to be migraines. This could be totally unrelated to the PFAPA, but all my other children are so healthy, I'm inclined to think these migraines are related to her condition. Given this additional symptom, I'm starting to wonder if maybe I need to get her re-evaluated. I've read that headaches are often experienced before episodes of cyclic neutropenia, and I'm not sure if this was ruled out before the diagnosis of PFAPA was given. Does anyone have any experience with changes in the PFAPA symptoms as children age?

     
    Old 08-23-2006, 07:14 AM   #7
    Alek_T
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    Re: PFAPA or Periodic Fever Syndrome

    Yogahome,
    You stated that "...a single monthly dose of Prednisone seem a small price to pay...", as I posted earlier about Prednisone, I will again emphasise dangers of using this drug (cosidering the tendency of this condition to resolve by itself) please look for it's side effects:
    headache, dizziness, difficulty falling asleep or staying asleep, inappropriate happiness, extreme changes in mood, changes in personality, bulging eyes, acne, thin fragile skin, red or purple blotches or lines under the skin, slowed healing of cuts and bruises, increased hair growth, changes in the way fat is spread around the body, extreme tiredness, weak muscles, irregular or absent menstrual periods, decreased sexual desire, heartburn, increased sweating, vision problems, eye pain redness or tearing, sore throat, fever, chills, cough, or other signs of infection, seizures, depression, loss of contact with reality, confusion, muscle twitching or tightening, shaking of the hands that you cannot control, numbness, burning, or tingling in the face, arms, legs, feet, or hands, upset stomach, vomiting, lightheadedness, irregular heartbeat, sudden weight gain, shortness of breath especially during the night, dry hacking cough, swelling or pain in the stomach, swelling of the eyes face lips tongue throat arms hands feet ankles or lower legs, difficulty breathing or swallowing, rash, hives, itching...
    Prednisone may slow growth and development in children. Your child's doctor will watch his or her growth carefully. Talk to your child's doctor about the risks of giving prednisone to your child. Prednisone may increase the risk that you will develop osteoporosis. Talk to your doctor about the risks of taking prednisone and about things that you can do to decrease the chance that you will develop osteoporosis. Some patients who took prednisone or similar medications developed a type of cancer called Kaposi's sarcoma. Talk to your doctor about the risks of taking prednisone. Prednisone may cause other side effects.

    Of course, this doesn't mean that this is what is going to happen if you use this drug, but this is no Tylenol. It seems that the side effects are by far worse than the couse for using it, especially considering that it DOESN'T CURE this condition!

    Last edited by Alek_T; 08-23-2006 at 07:15 AM.

     
    Old 08-23-2006, 04:13 PM   #8
    PatriciaB
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    Re: PFAPA or Periodic Fever Syndrome

    The best place to get seen and diagnosed for any of the periodic fevers is at the NIH. That is the National Institutes of Health in Bethesda, Maryland. That is where my son was diagnosed and is treated and seen every 6 months. We are participating in a study there and the only cost to patients is transportation. Because it is all U.S. government funded, all doctor visits, genetic testing, labs, prescriptions, etc, are free. The more people that participate in the study, the sooner we will have answers and possibly cures. You need to be referred by your pediatrician or whichever specialist you see for the fevers and they need to submit records that show the history of the unexplained fevers and other symptoms.

    As to prednisone usage, I am not a doctor or any kind of medical person. I'm just a parent who has dealt with this for 13 years. I know of many parents who have used it successfully in their attempts to give their kids as close to a normal life as possible. Of course as with any other drug, it can have side effects but used sparingly, the benefits may outweigh the risks.

     
    Old 08-24-2006, 01:24 AM   #9
    Alek_T
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    Re: PFAPA or Periodic Fever Syndrome

    PatriciaB, my intention for emphasising the dangers of prednisone usage was neither to discourage and scare parents nor anything else for that matters. I was simply taken by surprise by reading so many posts (as well as some articles on the internet) where parents are almost jumping of joy that their kids are being on this drug. All I wanted to say was that this drug is not vitamin pill. Far from it!

    You wrote that ..you have dealt with PHAPA for 13 years.. does that mean that it's finally over?

     
    Old 08-24-2006, 05:21 AM   #10
    PatriciaB
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    Re: PFAPA or Periodic Fever Syndrome

    No, I wish! We've dealt with it for 13 years because my son is now 13 years old. He has been semi-diagnosed with Familial Mediterranean Fever which is one of the genetic fever disorders which also means that he will never outgrow it.
    I say "semi" because NIH diagnosed him as having Clinical FMF which means that whatever he has walks and talks like FMF but he does not match any of the known gene mutations for the disease. His symptoms are a good fit plus he responds very well to the only known medication used to treat FMF which is Colchicine. They have done studies that prove that Colchicine only works on FMF, not on any of the other fever disorders. We also don't fit the traditionally mediterranean background for FMF though they are finding more and more patients that don't fit that mold either.
    Actually, prednisone was one of the drugs that NIH is willing to let patients try to help ease the very difficult and painful episodes, but my local pediatrician wasn't willing to give it to a child with an already compromised immune sysyem.
    Now, you want to talk about poisonous drugs...colchicine! There's one for you! FMF untreated can do fatal damage to the kidneys while treatment with the colchicine does a number on the liver. You are caught between a rock and a hard place so as a parent, you have to make difficult decisions.

     
    Old 08-24-2006, 06:41 AM   #11
    Alek_T
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    Re: PFAPA or Periodic Fever Syndrome

    Sorry to hear about your son and the whole ordeal you are going through.

    There is one thing about my 3year old son that I have not see anyone else mentioned. Between the episodes of high fever, he is sweating like nothing I ever seen. Sometimes he looks like he just have fallen into a pool or something. The other kids he is playing with are also getting sweaty of course, but none of them like that. Acctually, the only time he has hard time to get sweaty is when he is supposed to be sweating, and that is when he is running high fever.

     
    Old 08-24-2006, 08:01 AM   #12
    PatriciaB
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    Re: PFAPA or Periodic Fever Syndrome

    Alek, my son is also a very sweaty boy, except when he is fevering. I know you said that your father is an ENT but I really feel strongly that any child with these periodic fevers should have the genetic testing to rule out FMF, Traps and Hids.

    From what I have read about pfapa, it usually stops on average after 8 years from the time it begins. That means that you still have about 5 more years of watching your little boy go through these fevers, hoping that it IS pfapa and waiting for it to stop. But what if it's not pfapa? It will not go away.

    Each one of the genetic periodic fevers is treated differently and in the case of FMF, if it is not treated, it could be fatal. Wouldn't it be better to know?

    To Yogahome who asked about the testing for cyclic neutropenia, the testing involves labwork for 6 consecutive weeks so if your child has been tested for it, I'm pretty sure you would know. If not then it might be something to ask the doctor to do.

     
    Old 08-25-2006, 06:54 AM   #13
    Alek_T
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    Re: PFAPA or Periodic Fever Syndrome

    Sure we plan to do some tests. Although, I quite frankly doubt that results are going to prove anything else than PFAPA, because as far as I know, all other similar dissorders involve some stomach problems of some kind which fortunately my son doesn't have, as well as pain in joints which he hasn't complained about.

    Last edited by Alek_T; 08-25-2006 at 06:57 AM.

     
    Old 09-18-2006, 06:52 PM   #14
    nickysierrasmom
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    Re: PFAPA or Periodic Fever Syndrome

    hi I have a 10 month old who has fevers every 3-4 weeks of 105 with no other symptoms. this has been going on since he was 5 months. Have had many tests done and they show nothing. waiting for the dna test to come back for familial med. fever. anyone else dealing with this have a 2 vessel cord while pregnanat?

     
    Old 09-18-2006, 11:07 PM   #15
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    Re: PFAPA or Periodic Fever Syndrome

    Hi folks, thanks for all the wonderful posts. I really need your help, I'm getting desperate. My son who is now 6 years old has had recurrent fevers (FUO, PFAPA?) for 3 1/2 years combined with Failure to Thrive (FTT) and continuously elevated ESR. He's very small for his age (41 inches, 28 lbs) and while he's growing very slowly on his own curve, he has gained very little weight these 31/2 years. Has anyone else experienced failure to thrive along with PFAPA? Since the fevers recur every 3-5 weeks, the doctors think it may be impacting his ability to grow. Anyone have any thoughts?

    He's been poked and prodded and tested by every specialist (Endocrinology, Gastroenterology, ID, Cardiology, Genetics, Rheumatology, Urology, ENT, Opthalmology, Immunology) at Lucille Packard Childrens Hosp at Stanford for over 2 years and we are no closer to a diagnosis now than when we started. He's been a guinea pig for several meds including Colchicine and nothing has worked. Currently, he's under the care of Rheumatology and taking Hydroxycloroquine for the past 4 months with little improvement.

    Thanks.

     
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