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Recurring Fever and PFAPA
I've been bouncing back to this discussion for past several months. My 6 1/2 year old son has been dealing w/recurring fever, every 4 weeks, since Dec. '07. Don't you just love the pediatricians that tell you "oh, your son just gets sick more than others...it's just a virus." Yeah right. So we switched practices, got blood work done, and we're working with a great pediatric rheumatologist. One interesting condition to check out: google "periodic fever" and Washington Post, read about an ENT surgeon who was trying to figure out what was causing his daughter's recurring fevers. Surprise "cure": remove the tonsils, fevers stop. This is the remedy my in-laws, and parents, and anyone else over the age of 40 recommends. Of course we're ruling out other condtions as well. But this is just another idea to throw in the mix for this frustrated group of parents. Best of luck to all.
This discussion is related to 7 year old son with recurring fever.
This discussion is related to 7 year old son with recurring fever.
My daughter 6 has started having the same spells of fever for this whole winter she has already had her adenoids and tonsils out so i'm guessing they are not related to whatever this is...anyone have any answers?...i'm off to the Dr's again we are up to 103 again
Recovered!
Hi all,
I wanted to share my son's story of overcoming PFAPA in the hope that it may help someone's child, who suffers from the same. Here is our story:
My son's recurring fevers started at 6 months of age. Initially the fevers, occurring every 4 to 6 weeks like clock work along with swollen adenoids were his only symptom. No runny nose, cough infection or anything else. The fevers lasted 5 days and did not respond to tylenol and motrin. They would peak at 40'C every 5 hours. We were in despair, my husband was missing so much work, and we could do nothing for our sons suffering! At just over 1 year old he started to have a febrile seizure once during every episode. We were in the ER every month with no help. In August 2008 he had two seizures during one fever episode and spent 5 days in the Calgary Children's Hospital where he had a host of blood work and tests done, along with a brain scan. We were discharged with no answers, only a referral to a pediatrian. At this time I began to do as much reading as I could and learned about PFAPA and it's various treatments but our pediatrician had never heard of it and wouldn't even entertain the idea that he might have it. The pediatrician sent us to an infectious disease specialist who diagnosed him with PFAPA, after just coming back from a conference on it and learning about it for the first time. We were very reluctant to start steriod treatment, and opted to go the route of adenoidectomy (we also read about the ENT in the Washington Post article), although at younger than 2 our son was not yet old enough. So we prepared ourselves to wait.
Now for the good news! At around the same time as the diagnosis, we were contacted by an Upper Cervical Chiropractor in Calgary who had heard of our son's case and asked if he could see him. I was hesitant at first, not even knowing what "Upper Cervical" was and whether a chiropractor could possibly cause more damage than good. However we went ahead... The Dr. explained to us that Upper Cervical chiropractors specialize in the treatment of the very top bone in the spinal column, which encases the brain stem, called the atlas. They take very precise and careful measurements to assess whether it is subluxated (out of place). After performing x-rays on Benjamin it became apparent the his atlas was rotated and shifted over to one side, putting definite pressure on his brain stem. They also found on that very first day that the temperature on one side of the base of his skull was 1'C hotter than the other, another indicator of pressure on the brain stem. The day after his first adjustment, the difference in temperature was less than 0.25'C. Now for the best news! Treatments started at 2 to 3 times per week. The first month, he developed a fever, but it was entirely less severe and lasted only 2 days. He had a very minor seizure. The next fever was 8 weeks later, very mild and manageable with Motrin and no seizure. Then nothing for 3 months. Then a mild fever, but after a visit with the chiropractor, the fever ended after 30 hours. And now we have been fever and seizure free for 5 months! My son is himself again. He only goes to see the chiropractor once a month just to check up and they never adjust him unless there is a need. He loves to visit "Dr. Dave" and we have been so encouraged! If anyone has questions please let me know. I hope this brings encouragment!
Hi all,
I wanted to share my son's story of overcoming PFAPA in the hope that it may help someone's child, who suffers from the same. Here is our story:
My son's recurring fevers started at 6 months of age. Initially the fevers, occurring every 4 to 6 weeks like clock work along with swollen adenoids were his only symptom. No runny nose, cough infection or anything else. The fevers lasted 5 days and did not respond to tylenol and motrin. They would peak at 40'C every 5 hours. We were in despair, my husband was missing so much work, and we could do nothing for our sons suffering! At just over 1 year old he started to have a febrile seizure once during every episode. We were in the ER every month with no help. In August 2008 he had two seizures during one fever episode and spent 5 days in the Calgary Children's Hospital where he had a host of blood work and tests done, along with a brain scan. We were discharged with no answers, only a referral to a pediatrian. At this time I began to do as much reading as I could and learned about PFAPA and it's various treatments but our pediatrician had never heard of it and wouldn't even entertain the idea that he might have it. The pediatrician sent us to an infectious disease specialist who diagnosed him with PFAPA, after just coming back from a conference on it and learning about it for the first time. We were very reluctant to start steriod treatment, and opted to go the route of adenoidectomy (we also read about the ENT in the Washington Post article), although at younger than 2 our son was not yet old enough. So we prepared ourselves to wait.
Now for the good news! At around the same time as the diagnosis, we were contacted by an Upper Cervical Chiropractor in Calgary who had heard of our son's case and asked if he could see him. I was hesitant at first, not even knowing what "Upper Cervical" was and whether a chiropractor could possibly cause more damage than good. However we went ahead... The Dr. explained to us that Upper Cervical chiropractors specialize in the treatment of the very top bone in the spinal column, which encases the brain stem, called the atlas. They take very precise and careful measurements to assess whether it is subluxated (out of place). After performing x-rays on Benjamin it became apparent the his atlas was rotated and shifted over to one side, putting definite pressure on his brain stem. They also found on that very first day that the temperature on one side of the base of his skull was 1'C hotter than the other, another indicator of pressure on the brain stem. The day after his first adjustment, the difference in temperature was less than 0.25'C. Now for the best news! Treatments started at 2 to 3 times per week. The first month, he developed a fever, but it was entirely less severe and lasted only 2 days. He had a very minor seizure. The next fever was 8 weeks later, very mild and manageable with Motrin and no seizure. Then nothing for 3 months. Then a mild fever, but after a visit with the chiropractor, the fever ended after 30 hours. And now we have been fever and seizure free for 5 months! My son is himself again. He only goes to see the chiropractor once a month just to check up and they never adjust him unless there is a need. He loves to visit "Dr. Dave" and we have been so encouraged! If anyone has questions please let me know. I hope this brings encouragment!
Hi-Did anyone find any answers? My almost 5 year old daughter has had recurrent fevers for the past 3 months. She did have a diagnosis of walking pneumonia once, and a cough and cold one time. She has had 3 blood tests, and the only thing that comes back is low iron/slightly anemic. The dr. just thinks she is "sickly" I think it may be more...help!
Have you looked into all the Periodic Fevers. Hyper IgD or Famila Mediteranian Fever or others. My daughter was diagnoised in June with PFAPA . She is 9 now had fevers since 10 months. Hang in there It took many doctors and many tests but there is a doctor out there that will listen ours happen to be an Immunologist.
I too have a child of 2 who has had reoccuring fever since she was 7 weeks. which we were sent to the hospital and had a 4 day stay , next was at 3 months for 4 days again, at 9 months it was to emergency every day then to hospital for 3 however that was RSV. at 14 months and 24 months we were hospitalized due to febral seisure cause by high grade fever over 40 celsius . same sysmptoms high fever within 24 hours on iv due to dehydration this time it was also a major drop in her potassium. she has a heart murmur as well. We in the fist 18 months fought with rounds of diarreha and fever in between hospital stays, elevated white cell due to 'virus' and bad luck. We had puffers for the first due to some wheezing. rash since she was born on the legs and has reoccuring daper rash even though no more diapers and has five main rashes on her body that flare up when she is going to get sick.. also a rash on the face that gets crimsom some times and pale others.
Any one out there have anysuggestions besides her just being an unlucky toddler
Any one out there have anysuggestions besides her just being an unlucky toddler
My oldest grandchild has had recurrent high fevers for about four years. They come every 28 days like clockwork. She has stomach pain, nausea, headaches, muscle pain, over whelming fatigue, and usually vomiting at least once an episode. The good docs (and there have been many) think it is PFAPA or Familial Mediterranean Fever. Her test for FMF came back "fuzzy, positive." Every other test has come back negative. They say they cannot definitively diagnose this, If we really want to know what this is, we have to take her to NHI for bone marrow extraction and spinal tap, plus redo all the numerous tests she has already endured.
Since I was 5, I have suffered from something very similar:
Symmetrical joint pain, often severe.
Chronic oral yeast infections.
Fever – low grade as an adult, high fevers as a child.
Rash especially on lower legs – Dx: one doc says lupus; one says eczema.
Extremely dry eyes and sometimes the mouth.
Cluster headaches that come and go.
Chronic nausea and diarrhea.
Extreme fatigue.
Chronic blood in urine.
Elevated SED rate, low IgG – underwent one year of IgG infusions.
In the past five years, I have been diagnosed with:
Peripheral Neuropathy in GI tract, left arm, both lower legs and feet.
Degenerative arthritis – one knee replacement.
Severe restless leg syndrome that flares every day, asleep or sitting.
Cataracts – laser surgery required on both eyes.
Gastro paresis – hospitalized twice for four days plus.
Past diagnoses doctors have sworn to:
Juvenile Rheumatoid Arthritis.
Encephalitis.
Ankylosing Spondylitis – one nephew has this
Sympathetic Arthritis.
Rheumatoid Arthritis.
Sjogren’s Syndrome.
Lupus.
Mixed Connective Tissue Disease – this is the one I think is correct
My people were Black Dutch, which oftentimes means FMF gene. Most of my symptoms come and go. They have been serious 3 times in my life: age 5, age 30, age 50. The first time, I missed the first grade; the last two times I had to take long leave of absence. (I am a full time, high school teacher.)
I don’t know if this will help you or not. We are desperately trying to resolve my grandchild’s problem, but she has had enough painful tests. I see so many of the problems I have endured for 50 years present in my grandchild. I am past caring what my true diagnosis is; but my daughter really needs to know what Ali has.
Since I was 5, I have suffered from something very similar:
Symmetrical joint pain, often severe.
Chronic oral yeast infections.
Fever – low grade as an adult, high fevers as a child.
Rash especially on lower legs – Dx: one doc says lupus; one says eczema.
Extremely dry eyes and sometimes the mouth.
Cluster headaches that come and go.
Chronic nausea and diarrhea.
Extreme fatigue.
Chronic blood in urine.
Elevated SED rate, low IgG – underwent one year of IgG infusions.
In the past five years, I have been diagnosed with:
Peripheral Neuropathy in GI tract, left arm, both lower legs and feet.
Degenerative arthritis – one knee replacement.
Severe restless leg syndrome that flares every day, asleep or sitting.
Cataracts – laser surgery required on both eyes.
Gastro paresis – hospitalized twice for four days plus.
Past diagnoses doctors have sworn to:
Juvenile Rheumatoid Arthritis.
Encephalitis.
Ankylosing Spondylitis – one nephew has this
Sympathetic Arthritis.
Rheumatoid Arthritis.
Sjogren’s Syndrome.
Lupus.
Mixed Connective Tissue Disease – this is the one I think is correct
My people were Black Dutch, which oftentimes means FMF gene. Most of my symptoms come and go. They have been serious 3 times in my life: age 5, age 30, age 50. The first time, I missed the first grade; the last two times I had to take long leave of absence. (I am a full time, high school teacher.)
I don’t know if this will help you or not. We are desperately trying to resolve my grandchild’s problem, but she has had enough painful tests. I see so many of the problems I have endured for 50 years present in my grandchild. I am past caring what my true diagnosis is; but my daughter really needs to know what Ali has.
I am sitting here holding my 2 1/2 year old daughter as I search for some answers to her recurring fevers. I guess this is a topic that a lot of us parents are trying to get to the bottom of. It's a wonder the doctors are not more in tune to this. I am beside frustrated right now. Good Luck!
well funny enough( and dont get me wrong I do not recomend surgery ) I had my tonsils out having been a very sickly child with fevers ,sore throats ,ear aches for years, at 8 they removed them and I hardly got sick after that,however I know they say not to take them out now and I am all for leaving anything in you in case you need it one day.Does your Daughter have ear ache and sore throats with the Fever?
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