new member!

[Guest guest]

Hello everyone!

My daughter Teagan, age 22-months was just diagnosed with possible and I

was so happy to find this group as I've struggled to research this disorder.

Teagan has had high fevers since around 6 months but they only came into cycle

around January of this year. At first, everyone thought we were crazy when we

said she was sick every three weeks with only a fever of unknown origin. We

finally got the attention of doctors after switching to a smaller practioner and

then Teagan had a seizure, unrelated ot the illness. Every test possible was

done when she had the seizure. She had been sick all week with a stomach virus

but for once, no fever. They never found the cause of her seizure and she has

been seizure free for over one month. Three weeks later, she was yet sick again

with a high fever (107) and no other symptoms. Her doctor then referred her to

a pediatric infectious disease doctor at the University of Kentucky Hospital.

He was wonderful.

He spend an hour examing and playing with Teagan. He looked through her past

records and noticed that she had a red throat and large lymph nodes with some of

her fevers and immediately thought it was . He is reluctant to treat her

without a more documented pattern so we have started to keep a calendar. She

just finished yet another cycle, 3 weeks to the day from her last. However this

time, she complained that her stomach and head hurt. After reading the founders

of this group's story, that has caused me great concern. She is so small for

her age (20lbs) that is seems with each episode she struggles even more to

recover. She sleeps excessively afterward. WEll, thanks for listening to my

story. I work full-time and have a 3-year-old as well so I may not always be

able to respond right away but I hope to be an active participant as we continue

to find the best care for Teagan. I am so grateful that we immediately found a

doctor familiar

with the disorder and our primary doctor insists on checking her with every

fever to document the symptoms so we are hopeful to start some treatment in the

Fall.

Sincerely,

STacey

Stacey