Father to Daughter with Periodic Fevers

December 7, 2008

Hi all,

I'm a father to a beautiful little girl about to turn three who we are hoping

has . Hoping, because some of the things we have been tested for seem much

scarier. She has had five fevers in about 5 1/2 months. On the third one, we

noticed they were generally showing up on the 20th of every month. They did

blood work and a urinalysis. The blood work came back with elevated SED Rate,

CRP, and she was anemic. They also noted blood in her urine. On that third

fever, she was also complaining about pain in her leg, but that was the only

fever in which that complaint was aired.

Having had a younger sister die of bone cancer when I was young, hearing the

blood results, and the pain in her leg (from which my sister's cancer

originated), I freaked. We met an oncologist. Negative for leukemia. We have

seen an immunologist. She pretty much ruled out rheumatoid arthritis and noted

that her immune system seems to be working properly, just in overdrive. She has

now referred us to a rheumatologist due to concerns about Lupus, yet her ANA

blood work was normal. We did x-rays and an ultrasound of her abdomen due to

the blood in the urine...they all came back relatively normal.

In the meantime, we have had multiple blood tests. One, one day after the third

fever broke, where all the results noted above were elevated. One, two weeks

after the third fever broke, where all her blood work was normal. And, a third,

about five days after her fourth fever broke, where the noted elements were in

between the higher noted numbers and normal.

No other symptoms have accompanied her fevers, although, with the last one her

tonsils did appear a little red.

In between episodes, she is normal. Normal being energetic, non stop, healthy,

growing normally, etc.

On her latest fever, we alternated Motrin and Tylenol every four hours, and she

was a normal child. It was like she wasn't even sick. In fact, she was acting

so normal, we thought we were past the fever stage, stopped giving the drugs on

the fourth night, and the fever immediately spiked overnight. We continued for

another 24 hours and she was done with that episode.

The episodes have lasted anywhere between 2 and 5 days, never longer. We are

frustrated. We want answers. But, it is more a process of elimination than a

providing of answers.

Our next steps are meeting with a nephrologist for her kidneys and the

rheumatolgist to hopefully eliminate lupus. I'm looking forward to seeing how

other parents have met this challenge and your stories.

December 7, 2008

Hello. My son has been fevering now for almost 2 years. He started

holding his urine when fevering and complaining about belly pain. We

saw a urologist that did an ultrasound and VCUG that showed that he

had a severe case of his urine refluxing back into his kidneys.

However, he never showed any signs of urine or kidney infection. His

urologist scheduled a DMSA scan which showed some kidney scarring

from the reflux. Since he had a severe case he had to have surgery,

hoping that this would end his fevers actually seemed as though it

brought them closer together.

It's been a very long process, and some hospitalizations to get some

answers, but still not definate that it is . We keep a journal

with details with each fever he gets. It helps to know what to

expect for the following month, and easier to keep track of with each

specialist we see.

It's very frustrating. The good thing is that we have this group for

support. No one knows any better what our children go through than

us.

December 7, 2008