Hi, I'm 21 years old, im from Chile, and last year I started with pfapa syntoms. Right now, im having an episode, and im feeling really bad. Can you give me some tips? Or share your treatments with me? My doc recommend me prednisona for these episodes.View Thread
Hi I just noticed this board. My son is 18 yrs old now and in college. He was diagnosed with PFAPA back when he was 1 or 1 1/2. He outgrew it when he was in 2nd grade. Lately we have had a concern that is was coming back so thought I would check things out again. If you have any questions I would be happy to try to answer them. I don't know how long ago you wrote this but just thought I would drop a line.View Thread
I just came across this post and I am wondering the same thing. I think you are on to something. How did your doctor test for it? Skin? What kind of doctor knows how to treat? I would love to know more about this and who you saw and what you did to get them to help. Thankyou for your post.View Thread
My daughter had her tonsils removed a month after being diagnosed with PFAPA. She was fever free for 14 months. In November she had her first fever and it lasts only a few days. They said "it's a virus". On December 6th my daughter woke in the middle of the night complaining of chest and joint pain with 103.6 fever. By the next day her gums were swollen and bleeding with sores at the gum line. Poor baby could not eat for days and was put on codeine to assist with pain and sleeping. We were clear for a good while but it seems this was not a cure in our case.View Thread
Lor I can tell you this after the surgery she it was ruff and a fight with her to get her to take meds or anything. She did get Fever o e weekend but it only was one day. She was very sick with a cold later. Now she seems fine. I am still scared to death as any mom would be, but she has been in school a whole week now now. She seems so much better. Even in a few weeks if the fever comes back I believe have her tonsils and adenoids out in the very lest has made the episodes shorter and ferther apart and less painful. Get it done asap. It will be tough to put your baby through it but sooner is better then later. Even if its not 100% cured it helps a whole lot and honestly it is the only thing that will. I am not a doctor. I am just a mother and in your shoe. I know the stress and worry. Fight to get the doctor to remove them. Either way it was worth it. Also a side note if they put your baby on any strong pain meds people request a stool softener. Keep me posted please.View Thread
I have my own theory about PFAPA. It sounds crazy but it reminds me of a menstrual cycle. My daughter has had periodic fevers for 1+ years. Back and forth with doctors. Some say pfapa others are unsure. The body works together and I feel like removing the tonsils only masks the problem. Any one else think this could be a hormonal thing?View Thread
Wow...this is exactly what we are going through right now, but I didn't even think about the molars. Our 7 yr old son was diagosed as a toddler with steroids not working he had a tonsillectomy at age 4. It worked great, hardly ever sick...but in the last 2 months he has been cycling about every two weeks again. It lasts about 6-8hrs with vomiting & horrible headache. We are going to the Dr tomorrow...did anyone find out any correlation between molars & exacerbation of PFAPA symptoms?View Thread
I came across your post when i was looking online for PFAPA remedies. I am just curios to know if your daughter has completely recovered now..My lil boy (almost 3) has this for last 18 months..Since we too live in Minnesota can you please share the details of the chiropractor? We had taken our lil one to the children s hospital of MN and saw the infectious disease specialist. She gave us prendesone (sorry for the spelling) and i do not want to treat my little one with steroids.. I am willing to do anything that might help him.. Any info will be greatly appreciated..Thanks!View Thread
After 17 months, of my daughter suffering from Periodic Fevers, 4 different doctors, 5 ER visits. We finally have a diagnosis, and we are on the road to recovery. My pediatrician is still less than helpful seems to me that she is more interested in proving me wrong. I will all posted on my daugther's progress, good luck to everyone.View Thread
Hi , Thanks for your story I love happy endings . My grandson started getting fevers at 4 months old and now...
Posted by An_257798
Hi , Thanks for your story I love happy endings . My grandson started getting fevers at 4 months old and now he is just weeks away from his 4th B'day . We were told there is no blood test that would confirm PFAPA . Do you know the name of the blood test . ? The poor little guy had so many blood test already but that was to rule out other conditions . Do you know of any other cases were a tonsillectomy worked ? We can really use a miracle .View Thread
| ReplyReplyReport This| Share this:PFAPA CUREHi , Thanks for your story I love happy endings . My grandson started getting fevers at 4 months old and now...
Tonsillectomy cured my four year old granddaughter. The medical data is clear that this is a cure for many. Not sure why so many parents and children continue to suffer when this is an available cure. My granddaughter was treated at Univ. of Michigan Children's Hospital in Ann Arbor. Perhaps that hospital or Children's Hospital in Boston, where she was seen for a referral, can provide guidance for finding a doctor near you who can help you through diagnosis and tonsillectomy. Before tonsillectomy, my granddaughter's fevers were kept away by daily doses of cimetidine, but that stopped being effective after a few month. Then the tonsillectomy stopped the fevers. View Thread
My son is 12. He was diagnosed at age 7. It started to taper, but it is back with a 6 week interval. I am getting crazy stressed. Being in M.School, he is missing school so much. I am starting to consider getting tonsils removed. I his fever is not as high (low grade) and no mouth ulcers. Just SORE throat and weak muscles/legs. I hear you and totally understand you!!!View Thread
My daughter is 6 1/2. She had rsv and pneumonia at just under a year of age. since then she has had episodes every six weeks or so of fever, headache, sore throat, sometimes accompanied by vomiting. Sometimes just fever and headache. Fever is usually 104 and above and can be brought down to 100 with ibuprofen but not completely controlled. Episodes last 5-7 days and are almost like clockwork. we can tell by her actions the day before one hits and can almost time when the fever will hit, if and when she will vomit, etc. In the beginning we would take her to the Dr. but after continually being told that it was just a virus, take her home, we started managing the episodes at home. We have only recently started seeing a new Dr who wants to pursue the cause. She wants to send us to immunologist, gastroenterologist, and infectious disease specialists, finally some progress. Then a nurse friend send me an article about PFAPA. She has only had mouth sores once that I remember but they always want to test for strep because of how her throat looks. Can anyone relate? Or am I just pulling at straws to find an answer? Sent article to Dr and she said she will do some research on it. It is starting to affect her school and I am missing more and more work, the older she gets. She has 4 sisters, none of them have had any similar issues. We do have a family history of leukemia and human t cell lymphotropic virus but neither of these seem to make sense for her symptoms. Thanks for listening.View Thread
My 7 year old has had fevers since November and was just diagnosed w/ PFAPA. She was actually tested for...
Posted by An_253484
My 7 year old has had fevers since November and was just diagnosed w/ PFAPA. She was actually tested for Familial Mediterranean Fever & other genetic forms of periodic fever syndrome because she always has had severe stomach aches with her episodes. The genetic testing came back negative & her rheumatologist just diagnosed her w/ PFAPA. Guess my point to this "book" is severe stomach aches can be normal, but not fun View Thread
I hope someone here can give me some support/help. My son is 6 years old and has been sick since he was 6 months old. Starting @ 6 months he started running high fevers of (104-105) for at least a week at a time every 2 weeks. During this time he also had several sinus infections, upper respiratory infections, a blood infection that required hospitalization, and a mysterious rash. He did this until he was about 1 1/2 then it stopped suddenly for 6 months. Then at 2 it started all over again. He started having pneumonia that required serious interventions at home and one hospitalization, throat infections (not positive for strep though), and chronic sinusitis. At 3 (after rescheduling 3 times because of illness) he had his tonsils and adenoids removed. After that surgery we were admitted to the hospital for a week because he couldn't recover no matter how much we tried and helped him. Then he seemed better for 6 to 7 months, except his sinusitis because of allergies. We saw and allergist that prescribed an adult dosage of Zyrtec and that helps 1/2 a day when his allergies are bad. In September of last year he had to pneumonia they tried every medicine for but nothing helped and it kept getting worse. We were admitted and it took several rounds of strong antibiotics and a week of strong antibiotics at home. Since then he's had pneumonia 3 or 4 times (Ive lost count), croup that required steroids and breathing treatments, sinusitis that requires antibiotics because he gets so sick. Then about a month ago we had to see an oncologist because his numbers dropped so low during a fever episode. He had severe neutropenia (dropped to 500), abnormal platelets, way low WBC, etc. They did every test including bone marrow biopsy and still can't figure out what happened. We are so tired of infection after infection. He hasn't gained weight since 2011, seem to get tired easier (can sleep 13+ hours if we let him), has constant dark circles under his eyes, and blood shot eyes everyday. Anyone else had a child like this? If necessary I can post his labs from the last visits and hospitalization with our Infectious Disease doctor. Please help!!! Oh I forgot he had on serious eye infection that required to different antibiotics and staph on his elbow from a scrape and cuts seem to take longer to heal on him. He also has headaches that cause light sensitivity and has become much more grouch lately (could be age with that one though)View Thread
Could you give me the name of this chiropractor? We live near that area and I would like my son to see him. He was diagnosed with PFAPA at 4 years old and seemed to grow out of it, but has had the same symptoms again for the last 6 months. ThanksView Thread
We dealt with PFAPA for two years with my son. His first fever was at 24 days old. We went to every specialist around....he had the high fevers like clockwork. He never had any mouth sores and never had strep throat. I don't know if he had any joint pain since he is so young. We ended up with an Infectious Disease doctor and a Rheumatologist who was the first to suggest Periodic Fever - although her suggestion was steriods. We ended up at Pediatric ENT (I would strongly recommend a pediatric ENT) he took one look at my son and said he would remove his tonsils and adnoids. My son was 27 months old when we had that surgery done. It has now been 4 months and we have not had another fever episode. It is amazing the difference. It definitely worked in our case. I know exactly what you are going through and I truly feel for you and your family. I pray that perhaps the same might work for you.View Thread
My 8 year old was diagnosed with PFAPA 3 years ago when she was 5. She has been having severe stomach aches for months now and might has an Eosinophilic GI disorder. Has anyone in the PFAPA community had any experience with this?View Thread
My 15 yr old grand-daughter was diagnosed with pfapa as an infant after too many tests on her tiny body. Her fevers come every 2 weeks like clockwork. Her fevers are always 103 and upward from there. Motrin seemed to work the best for her. She has cancor sores, body aches diarhea and vomiting. We were told she would outgrow it. But now in high school she misses so much and works so hard to catch up and is going to lose credits because of missing school. The poor girl has suffered with this forever. We are also wondering about the diagnosis as something called HIDS may be even closer to her ailment even though she does have all of PFAPAs symptoms.View Thread
I hope you still check and read this post. I just want to share a little of my stories with you both in hope that it could offer some help maybe.
I am from Australia, I have PFAPA when was about 18 years old, I was not properly diagnosed until 25/26 years old, most doctors old me I have chronic fatigue syndrome. I have this nearly 12 years now.
How I found out for sure was my doctor did full blood test on me every time I have a fever, after three tests I was referred to an immunologist/ rheumatologist. I have high white T cell count, lymphocyte, every time I have fever and c reactive protein.
I did not vomit however I came close to it many times, I often have this silver test in my mouth, upset stomach, lost of appetite, nausea, high fever sometimes up o 41 degree Celsius, swollen glands around the throat area, ulcer, sometimes headache of the fever is very high, my skin feel sensitive,, feel ache like as if it is coming deep down from my bone, my skin feels tingly at times sometimes like small little lightning strike running through parts of my body. I do not have big swollen glands in the groins area, but they sometimes feel sensitive and tender and once in a while I have could feel little lumps.
I used o have the fever every two weeks, and it was so severe, until I started on Prednisolone 25 mg, nearly two years ago. I have now decided to stop taking the steroid as my my fever are not as strong and lengthy as they use to be anymore, I now just take paracetamol when I have the fevers.
I wrote this to you because I do not think tonsillectomy will help our daughter. Because I do not have a tonsil and I still have the fevers. Tonsils are quite important in protecting you from other viruses and disease. I recommend you see an immunologist or rheumatologist if there is one near you.
If you have any questions about my Prednisolone dosage, what I do to cope or anything questions at all concerning PFAPA please free to contact me on this site or thread.
My son was 4 when he started with fevers and got them regularly about every 21 days for a year until he was diagnosed with PFAPA. He was so sick every few weeks but was good in between the fevers. He had his tonsils and adenoids out last October and has not had another fever since. He is a new boy now...healthy, happy, full of energy. We saw a wonderful doctor in Boston, MA who was very familiar with PFAPA, but I must say, many doctors are not even aware of it. Our pediatrician had never heard of it and it took our own research and finding a doctor who was aware of it in order to get a diagnosis. You may want to consider the tonsillectomy,it was an instant cure.View Thread
My 5 year-old-son has been very sick for four years now. He is blood transfusion dependent, suffering from regular fever episodes with various symptoms and has a chiari 1 brain malformation along with fluid in his spinal cord. The genetic testing for PFAPA and other fever syndromes are negative. During a recent effort to increase my son's blood counts, we gave him two doses of prednisone on Monday & Tuesday for 3 weeks in a row. By the end of each week during the period of time where the steroids had worn off, my son was struck with a fever and symptoms. The ID doctors do feel that this is not the typical behavior of PFAPA. Also, I want to point out that in between episodes my son is still feeling rather off and is not normal until the next one comes.
Does anyone have any experiences that are similar? Where the stopping of steroids triggers an episode? Does anyone find that a virus can trigger an episode? Does anyone notice that blood counts are affected? I would appreciate any feedback I can get. My son is very sick with several condition(s) and none of them are figured out. I am really trying to pinpoint whether or not this is PFAPA and we can treat it with a tonsillectomy.View Thread
I can relate to everything you have written. My son just turned 20 months old and we have been dealing with these fevers since he was close to one. This past year he was hospitalized 5 times. Over the summer we have just been dealing with the fevers. They have sent us to the following specialists: Pulmonary, Infectious Disease, Hematologist, ENT, and finally a Rhematologist. Our appt. last week was our first visit with the rhematologist. She was the first person that mentioned he might have PFAPA and wrote a script for the steriods. We aren't happy about the steriods but are curious to see if they work. We are due to have a fever in the next few days (although I'm praying we don't). It is heartbreaking watching him go through the fevers - he is just miserable. I discussed surgury with the ENT to remove his tonsils and adenoids but she was hesitant to do anything because he was so young and the risks associated with it. She said that she would feel better about it if he were at least 3. Which to us is so far away.
I can relate as well to trying to be there for everyone. I have a 13 week old and a 5 year old Type 1 Diabetic child. It has been a daily struggle trying to balance everything.View Thread
I am wondering what has happened with your son's voice in the last 2 weeks. This is extremely interesting to me. My son is 15 months old and I am just starting to go through the testing process for pfapa. I work in the medical field and am convinced my son has this syndrome. 3 week cyclical fever, always on a Friday. Have been dealing with this all summer. Always has pharyngitis with it, and have had numerous blood tests and strep cultures.
This is the first post I have read about hoarse throat. My son has this bad! My husband and I joke about him sounding like a pack a day smoker. Since his throat is sore I thought maybe it was tied to the pharangytis, but this make sense now.
I am curious to find out if you found anything out. Thanks!!View Thread
If your child suffers from periodic high fever at intervals of about 3—5 weeks, accompanied by a sore...
Posted by An_220596
If your child suffers from periodic high fever at intervals of about 3—5 weeks, accompanied by a sore throat, mouth ulcers, or enlarged cervical lymph nodes (glands in the neck), it would be wise to ask your physician if it could be PFAPA. Not all children have all symptoms, especially mouth sores. Some children have other symptoms like joint pain, abdominal pain, headache, vomiting or diarrhea.View Thread
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