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Old 11-04-2008, 07:30 PM   #16
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michele34 HB User
Re: PFAPA -what?

Her rheumatologist mentioned something about the antacid but didn't really say much. He just wanted her on the steroid. We just say the homeopathic doctor today. We're continuing with her treatment. Keep me posted with the antacid. Wouldn't it be great if that's all she needs.

 
Old 11-08-2008, 09:35 AM   #17
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Re: PFAPA -what?

Hi my name is Tiffany we have been going through doctor after doctor with our daughter. She had her first fever with red and swollen throat at about 16 months. Our doctor said it was strange to have step at that young of an age. Then the fevers started after that reaching as high as 105. She would be sick for 5-7 days and have a rash all over her body towards the end. We started doctoring at specialists at about 2years of age. We saw an infectious disease, dermantoligist, and rheumatologist. They all said blood work was normal and she was just getting viral infections. Now she is 8 and she is developing more symptoms in the last 12 months. Stomach pain, vomiting, fever, joint and muscle pain, headaches. We have moved since our last doctoring so we started all over again this last summer with infectious disease, gastro intestinal, and dermatologist doctors. The last two have suggested PFAPA. I have been doing a lot of research and my mom talked me into a natural chiropractor. My daughter has been on high doses of vitamins for four months. Her fevers have gone down to a little over 100 and her stomach aches are significantly better. she still has joint and muscle pain and red throat with swollen glands. We see an ENT on the 12th to talk about a tonsillectomy with the research I have been doing that has anywhere from 75-90% success rate for symptoms to go away or lessen. It's nice to be able to chat with others that know what I am going through!

 
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Old 11-12-2008, 07:20 PM   #18
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francis66 HB User
Re: PFAPA -what?

Tiffiney, how did your daughter make out today at the ENT? My daughters Immunologist mentioned to us about taking her tonsils out but her ENT was not to keen on the idea. She still gets her fevers and joint pain every month,.Since she was put on Prednisone in June fevers seem to be better. She will be 9 in a few months her Immunologist said usually between the ages of 13-17 they grow out of this, I have also heard of adult PFAPA. We have also tried a Flexologist( natural food & teas) it did not help. I wish the tonsil removal was 100% sure things would be much easier to figure out what to do.

 
Old 11-13-2008, 07:50 AM   #19
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Re: PFAPA -what?

We had to reschedule her apt. we had freezing rain here it is now next Wed. My daughter started a fever and joint pain on Monday. Tuesday we went to her pediatrician because we could not go anywhere else because of weather. He gave her a dose of pretnezone and said things should get better. They have not. She woke this morning with a temp of 105 with abdominal pain so bad she was in a ball. She had blurry vision and was dizzy. This was a first. I have a question. Her episodes do not go in a typical cycle. We don't see any symptoms for sometimes months at a time and there are other times it seems to come again and again with only a few days in between. She has a lot of the symptoms of PFAPA but I am worried they are rushing this diagnosis and might be missing something. Is it strange her symptoms are not in a consistent cycle? The natural chiropractor is suggesting a parasite infection and wants us to start a herbal treatment. She said it could upset her stomach though. I am at a loss as to what to do at this point.- Tiffany

 
Old 11-13-2008, 10:46 AM   #20
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francis66 HB User
Re: PFAPA -what?

My daughter has been getting her fevers since 10 mo. old she has missed maybe 3 episodes in the eight years. Her episodes are almost like clock work except for when she gets a cold that seems to move them back until her cold is over, also when they put her on antibiotics because they didnt know what was wrong with her. From the age of 2 till about 8 she would also get very bad stomach pains and vomiting, but that has gotten better. Now its fever, very bad headaches, joint pain mainly in her knees on and off throughout the month. During her episodes I have to carry because when she walks she gets dizzy and her head pounds when she walks. I also went through the parasite thing we did the enamas and rootseal and everything else. PFAPA does alot of weird things to them. I have been keeping a calander since she was 2. Differant symptoms come and go. Went to many different doctors her bloodwork would always show different problems., but finally this June she was diagnoised.

 
Old 11-13-2008, 08:11 PM   #21
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francis66 HB User
Re: PFAPA -what?

I was also going to ask you if she got tested for any other Periodic Fever episodes like HIDS or FMF?

 
Old 11-16-2008, 01:03 PM   #22
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tiff76 HB User
Re: PFAPA -what?

We are currently in the hospital. My daughter was not getting better so I brought her to her pediatrition on Friday. They did an x-ray and found an unusual gas pattern and suggested we go to Sanford Hospital and get admitted so they could run tests. They did a lot of blood work and a ct scan. She had developed a slight cough on Thursday and the nurse came in about 10 pm and said my daughter had developed penmonia in her left lung. There has been two blood test that have come back slightly high. One for a rapid infection and one for a persistent infection. They don't know if it is from the penmonia or another infection. We need to wait until this is cleared and we are going to the GI doctor for an eno and cloinoscopy. If this all comes back normal we go to a rhumatolisist. And no to your question she has not been tested for any other syndromes. She has been tested for some food alergies and routine blood work until this hospital stay.-tiffany

 
Old 11-17-2008, 12:25 PM   #23
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francis66 HB User
Re: PFAPA -what?

We will say a prayer for her. Hang in there and I hope they find something.

 
Old 12-01-2008, 07:33 PM   #24
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Linden123 HB User
Re: PFAPA -what?

For those of you who said that your children's symptoms got worse with steroids. My daughter's doctor just informed us that if your child has a bacterial infection the steroids can cause the infection to get much worse. Have you tried antibiotics? Has anyone had antibiotics work for their children's episodes of fevers?

My daughter is just over 3 years old and began having periodic fevers every 4 weeks about 1 1/2 years ago. She also gets very high fevers (up to 106.3), extremely swollen lymph nodes, very dark eyes and only once got the mouth sores. Just recently she started complaining of stomach and leg pain with the episodes. As we think that we have ruled out every single other cause known to man, the only thing that is left is PFAPA. Every time she gets the fevers she gets a dose of IV antibiotics followed by 3 weeks of oral antibiotics. If she completes the antibiotics within a few days of when her fever is expected she only gets a low grade fever the next month.

She is scheduled to get her tonsils and adenoids removed next month, but I am terrified of the surgery and am afraid that the diagnosis is wrong (despite the belief by 3 doctors that it is correct). I have not found other parents that have had temporary success with antibiotics for PFAPA. Has anyone here?

 
Old 12-02-2008, 07:06 AM   #25
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Re: PFAPA -what?

We have done antibiotics with our daughter but not for an extended time like you have been doing. They always ran strep tests and they came back negative but they put her on antibiotic's anyway because the doctor said her throat looked like classic strep. It did not seem to help her. Did they do blood work several times during her episodes that confirmed a bacterial infection? My daughters blood work always came back in normal ranges. We are going to the GI doctor tomorrow to set up a date for the scopes.
For the tonsil and adenoid surgery I know several children that have gone through it and they recover very fast when they are young. My niece was up and playing like her self the same evening she had her surgery. We have had one doctor suggest we just do that with our daughter before doing any other testing and if it solved the problem great and if it didn't it isn't like she needed her tonsils or adenoids anyway. I did not feel comfortable with that. I don't want to miss anything major if there is something else going on. I know how you feel when you say you question if she really has PFAPA. I hope all goes well. Tiffany

 
Old 12-02-2008, 12:10 PM   #26
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Help4Son HB User
Re: PFAPA -what?

My son (age 14) has been suffering for a year and half with what his rhuematologist believes is an auto-inflamm disease. It is very cyclic like PFAPA, but he does not run really high fevers. It involves rashing, joints, severe fatigue, sore throats, heart palp, and GI complications. We have done bursts of steroids to stop the flares and that worked for six months, but now he is getting no relief from the pain. He is scheduled to have a tonsillectomy on the 12th as a trial treatment. He has had strep tests with every flare for over a year and they are always negative. While trying to rule out I.B.D. they discovered he had Eosinophilic Esophagitis, which is only symptomatic during flares. The docs are all puzzled. I'll let you all know if the tonsillectomy helps... we don't know what else to try.

 
Old 01-17-2009, 05:28 PM   #27
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Linden123 HB User
Re: PFAPA -what?

Has he been tested for Chrone's disease?

 
Old 01-17-2009, 05:30 PM   #28
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Linden123 HB User
Re: PFAPA -what?

My daughter is scheduled for the adenotonsilectomy on Monday. We are just praying that it works. It is a tough decision to put a 3 year old under the knife but I am not sure what other choice we have. The fevers seem to be getting more and more severe and lasting longer.

 
Old 01-17-2009, 09:56 PM   #29
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Help4Son HB User
Re: PFAPA -what?

Yes, he has been tested for Crohn's and IBD and all was negative for that, but they found he had inflammation and eosinophilic esophagitis which could be a precurser for the above, or just secondary to an auto-inflamm disease like PFAPA. We've done genetics for all other periodic fever/auto-inflam diseases. The odd thing is, he doesn't really have high fevers, just inflammation, skin rashes, joint pain, mouth ulcers, GI stuff, and debilitating fatigue. We had his tonsils out on Dec 12th. Things have been better, but I think a new flare is beginning.

I pray that surgery helps your daughter. Are they taking out the tonsils as well? Keep me posted.

 
Old 01-21-2009, 11:21 AM   #30
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curlzz31 HB User
Re: PFAPA -what?

I am new to this board. My 2.5 year old has been having fevers every 2-4 weeks for over a year now. We are just starting to push for a diagnosis, as up until now her tonsils seem to get the blame (although all swabs are negative and she gets better within 4-5 days without antibiotics)
Just wondering how long everyone's child had the fevers before MD's starting taking it seriously and going beyond the "it's just viral" theory?

 
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