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Old 11-15-2007, 03:02 PM   #1
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Question my 3 year old granddaughter has been running a high fever for the last year every 6 w

This is the first time that I have used this board so I am not sure if I am responding in the right locations. Anyway, my 3 year old granddaughter has been running a high fever for the last year every 6 weeks. She is being seen at Children's hospital in Milwaukee. We finally got the lab test back for the 4 fever syndroms that they tested her for and they are negative. I'm not sure if that is good or bad. Along with the fevers she gets ulcers in her mouth and her touncils are swollen. It sounds just like the PFAPA. Does everyone have this genetic test done to determine that they have a fever syndrom?? Could this test be wrong. According to Children's it's not. Don't know where to go from here. After reviewing this message board, it sounds like we're not alone.

Last edited by moderator2; 11-15-2007 at 03:12 PM.

 
Old 11-21-2007, 12:26 PM   #2
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Re: my 3 year old granddaughter has been running a high fever for the last year every

Dear dj,

My niece was running extremely high fevers every two weeks or so for about two years. Every time my sister took her to the doctors, they would send her home with the diagnosis of a virus. Finally my sister said that was enough and insisted that they run tests. Everything came back fine. She then took Lily to an ENT and he suggested they remove her tonsils and adnoids because they looked a little large. After the surgery the doctor said he was sure this was the problem because the tonsils were much larger than they looked and were also full of sores. It has been over a month and so far so good. She hasn't gone this long without running a fever of 104 or more. I hope your grandaughter has as good of an outcome as my niece.

 
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Old 11-22-2007, 07:49 AM   #3
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Re: my 3 year old granddaughter has been running a high fever for the last year every

i wasn't aware that they had actual "tests" for the fever syndromes. my daughter was "diagnosed" this past summer after fevering for 2 years. her "diagnosis" was only after other things were ruled out. we actually never did any genetic testing. our T & A was on the 5th of november-she has been fever free since.
good luck figuring this all out

 
Old 11-24-2007, 06:02 AM   #4
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Re: my 3 year old granddaughter has been running a high fever for the last year every

To ts13 or anyone that might be able to help. They did 4 genetic tests on my granddaughter. One of them was the PFAPA and they all came back negative. That's why I am wondering if this could be wrong. She goes to Children's Hospital in Milwaukee on Monday but I have a feeling that they aren't going to have any answers. Ts13, how did your daughters test come out. Your daughter has the same symptoms as my granddaughter. It is so heartbreaking to see these kids so through this every 4-6 weeks. I have never heard of a fever syndrome until my Madison got sick. I feel like there has to be an answer out there somewhere.......

 
Old 12-05-2007, 12:57 PM   #5
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Re: my 3 year old granddaughter has been running a high fever for the last year every

Hi. My name is Sally and my daughter Beth will be 3 in March. We have been living with this condition for as long back as I can remember with no diagnosis until the summer of this year. She started with the fevers when she was about six months old but were told continously that it was just a virus so I stopped taking her in the end and tried to treat her with the normal paracetemol and ibuprofen medicines. These proved unaffective and she had a febrile convulsion which resulted in her being in hospital and where I was able to explain to them the frequency of the fevers. It has been a long hard struggle to even get this recognised as a problem and have been continuously told that she's just having a run of bad luck or she'll grow out of it. Now after her being admitted ever 2 to 3 weeks for over a year they can see that this is in fact the PFAPA syndrome. Today I finally had a break through as they are going to allow me to administer the predisalone steroid myself where as up until now we have had to spend 1 to 3 days in hospital while they run the same blood tests, test urine etc etc. I hope that she will now have some quality of life and not spend the majority of it in a hospital! Beth is the first child to have had this at the hospital we attend so I have never had any answers and reading about parents going through the same thing is such a huge help. She has never been tested for anything genetic and as far as I am aware no gene defect is yet to be found in PFAPA. Her only symptoms are the high temperatures and a red throat, and up to now she has had 4 febrile convulsions due to her temperature being so high. I also read that there isn't a way to test PFAPA it is just diagnosed by the symptoms.

 
Old 12-13-2007, 04:26 PM   #6
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Re: my 3 year old granddaughter has been running a high fever for the last year every

Quote:
Originally Posted by djandrews View Post
To ts13 or anyone that might be able to help. They did 4 genetic tests on my granddaughter. One of them was the PFAPA and they all came back negative.
There is no genetic test for PFAPA, but there are a host of genetic test for the other Periodic Fever syndromes. PFAPA is diagnosed based on symptoms and when all else is ruled out. It's kind of a catch all bucket when nothing else can be found and the child is having syclical fevers like you are describing. Sores, perdictable intervals of a very high fever, sounds just like PFAPA.

 
Old 12-30-2007, 01:25 PM   #7
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Re: my 3 year old granddaughter has been running a high fever for the last year every

CORRECT!no, testing for PFAPA, just other tests to rule it out.
T & A on Nov. 5th----STill fever free!!! YIPPEE!!

 
Old 01-02-2008, 07:25 AM   #8
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Re: my 3 year old granddaughter has been running a high fever for the last year every

Just to let you all know that my niece had her Ton. and Adnoids removed in Oct. She has been fever free since then. It is the first time since she was a baby that she has been fever free. Good luck in finding the problems.

 
Old 01-07-2008, 10:10 AM   #9
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Re: my 3 year old granddaughter has been running a high fever for the last year every

Had your niece tested postive for strep during her fevers? My son has tested positive maybe 30% of the time..but I would go through the Tons. if I thought it would end his 2 1/2 years of episodes!!

 
Old 01-07-2008, 11:59 AM   #10
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Re: my 3 year old granddaughter has been running a high fever for the last year every

Quote:
Originally Posted by connormom View Post
Had your niece tested postive for strep during her fevers? My son has tested positive maybe 30% of the time..but I would go through the Tons. if I thought it would end his 2 1/2 years of episodes!!
Hi connormom,

Most of the time my niece was negative for strep, they very rarely put her on antibiotics. Even the day before her surgery she ran a high fever (105). The Dr. decided to do the surgery anyway. After the surgery the doctor was sure the ton. were the reason for the fevers, they were much bigger and much more full of sores than originally thought. This was really surprising since the ton. were the last the thing they thought was causing the fevers. Good luck to you and your son.

 
Old 01-27-2008, 01:24 AM   #11
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Re: my 3 year old granddaughter has been running a high fever for the last year every

My daughter, now almost 5, had a febrile seizure at a little over a year old, with a fever of 105.3. She was taken by ambulance to the hospital, blood drawn, and given tylenol. They sent us home with a vague suggestion of some mystery virus as she had no other symptoms. The fever lasted for over two months. Alternating ibuprofen and tylenol every two hours was the only way to keep her down below 100.

Every couple of months this would start and last for varying amounts of time. Finally at age 3 1/2, we saw a WONDERFUL pediatrician that suggested that we start her on Zyrtec--allergy med. He said that allergies--plural, already have her immune system working full-time and therefore overreact to any little extra thing and thus, the high fevers. After two days on Zyrtec, she was fever-free and hasn't had one since.

Every other doctor that has heard this has said that allergies don't cause fevers, and roll their eyes a bit when I tell them, but at least in this case, they did, at least indirectly, because the allergy med has stopped the fevers. So there, you doubting Docs!

I know that this may be not at all what any of you have had or have but I thought I'd throw it out just for informational purposes.

Last edited by mrsed; 01-27-2008 at 01:27 AM.

 
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