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Old 02-09-2012, 06:26 AM   #1
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Join Date: Feb 2012
Location: Indiana, USA
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Sophsmom05 HB User
PFAPA in 6 year old

Hello, We have been fighting my daughters fevers since she was merely months old, she is now almost 7. About every 2 months give or take, she will get a fever that runs about 105 and last for about a week at a time. SHe does have swollen lymphnodes, no sores in her mouth, complains of headaches, and aches all over. I have been BEGGING her Dr's to run blood work ANYTHING to figure out what is going on with her. Most of the time she is extremely pail, and has dark circles under her eyes. We were blessed enough while finally being able to be seen by a urlogist, thinking it was her kidneys, due to wetting issues, that they made us an appointment with an Infectious Disease Specialist. The Dr told us that she has Periodic Fever Syndrome and explained the most common 3 types.
1) Removal of the tonsils, and adnoids along with taking Prednisone
2) It could be an issue in her bone marrow not producing enough white blood cells almost like a timer, and when the count is low that is when her fever spikes( hence her color)
3) Genetics

We have to go to the hospital twice a week for the next 6 weeks so they can get a read on the elevation in her blood cells. In 8 weeks we go back to find out which route we will be taking to stop the fevers. I am EXTREMELY concerned about the bone marrow part of it, and wasn't sure if anyone else has been given this list of "could be's" ? Any information will be GREATLY appreciated!

THank you,
Very worried, mommy

 
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Old 02-10-2012, 07:16 AM   #2
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Join Date: Feb 2012
Location: Loxahatchee, FL, USA
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KeysMom HB User
Re: PFAPA in 6 year old

I am new to this forum and just came across your message. I have a 12 year old son with PFAFA. He started showing symptoms at 3 months old. He had high fevers and would hold the back of his neck with both hands. His doctors kept telling me that he was having multiple viruses. I began to document his fevers, ear infections and other symptoms, like swollen, spotted tonsils and, as he got old enough to talk, joint pain.

When I showed them the pattern, they finally agreed that he wasn't having a virus every 3 to 4 weeks with these symptoms. We started looking for infections. They did CT scans, chest X-rays and blood work.
They could not find anything wrong and went back to the old idea of viruses.

As he got older the fevers became more frequent. They came at least once every 10 days and lasted for 2 to 5 days. I was so scared I would sit by his bed at night and pray that God would not let him die. I could barely sleep because I was afraid I would wake up and he'd be dead. It was the worst thing I've ever been through.

This all seemed to peak when he was 7 to 8 years old. He also had pale skin with dark circles under his eyes. He looked really bad when he had symptoms and his coloring was paler with darker eye circles. I took him to see specialist after specialist. We tested his blood for months. When he wasn't having the fevers, the blood work was perfect. If the blood was taken during a fever, his reactive C protein levels were up. I finally got the diagnosis for his disorder.

As he has gotten older his symptoms have lessened greatly. Now he only has symptoms once every 2 to 3 months and they usually go away within 2 days. I buy organic dairy and he drinks 3 to 5 cups of milk per day. He takes omega 3-6-9 blend, melatonin 3 mg at bedtime and vitamin D. He eats a lot of fruit and vegetables (which he prefers raw). He is small in statue and has ADD, not the hyper kind, he has focusing issues. He rides his bike for short times throughout the week. A large amount of exercise or not enough sleep can still set off a fever. But he is so much better now, it is like night and day from before.

Hopefully, some of this will help you or someone else reading it. I do feel like my prayers were answered. Best wishes to your child and you.

 
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