It all started in the fall of 2008.
I'm on a walk with Jake (18 mos) through our neighborhood when all of a sudden he starts limping. X-rays revealed nothing wrong. Multiple times over the coming months he would all of a sudden cry and refuse to put weight on his left leg. Overshadowing the limping were the fevers that Jake started to battle. He would appear to be sick but the only symptom would be a high fever. He would be so tired, he'd cry, he wouldn't eat. It was awful and we started to really worry about him.
Doctor #1 did blood work. She misread the results and sent us to Pittsburgh Children's Hospital to see a Pediatric Nephrologist. (She has told us that something was wrong with his kidneys.) PCH sent us home and told us to change doctors.
Doctor #2 said, "He's a little kid. He's going to be sick 70% of the time." WHAT?
Doctor #3 was a specialist in the Diagnostic Group back at PCH. Still no answers.
Doctor #4 did more blood work. And more blood work. Jake was getting really good at giving his "Jake juice." His SED rate would be elevated sometimes, sometimes it wouldn't be. An elevated SED rate signifies an infection in your body. However it doesn't tell you where.
Then enter Grandma Ensey!
What multiple doctors can't solve.... Nana can.
She ran across the following article on The Cleveland Clinic's website... click here. It was the first time we had heard about Periodic Fever Syndrome. The one syndrome called PFAPA described Jake perfectly!!
Now it's June 2009. We were on a way to Virginia for vacation when Jake got sick again. We should have known because he consistently got sick the first week of every month. He would wake up with a fever of about 104 and it was consistently stay high for about 5-6 days. The fevers wouldn't respond to Tylenol or Advil. He would also get sores on the back of his throat which caused him to not want to eat. But as soon as the episode was over he was fine. So after the poor little guy was sick most of our vacation we decided to look into the PFAPA thing as soon as we got home.
I'm on a walk with Jake (18 mos) through our neighborhood when all of a sudden he starts limping. X-rays revealed nothing wrong. Multiple times over the coming months he would all of a sudden cry and refuse to put weight on his left leg. Overshadowing the limping were the fevers that Jake started to battle. He would appear to be sick but the only symptom would be a high fever. He would be so tired, he'd cry, he wouldn't eat. It was awful and we started to really worry about him.
Doctor #1 did blood work. She misread the results and sent us to Pittsburgh Children's Hospital to see a Pediatric Nephrologist. (She has told us that something was wrong with his kidneys.) PCH sent us home and told us to change doctors.
Doctor #2 said, "He's a little kid. He's going to be sick 70% of the time." WHAT?
Doctor #3 was a specialist in the Diagnostic Group back at PCH. Still no answers.
Doctor #4 did more blood work. And more blood work. Jake was getting really good at giving his "Jake juice." His SED rate would be elevated sometimes, sometimes it wouldn't be. An elevated SED rate signifies an infection in your body. However it doesn't tell you where.
Then enter Grandma Ensey!
What multiple doctors can't solve.... Nana can.
She ran across the following article on The Cleveland Clinic's website... click here. It was the first time we had heard about Periodic Fever Syndrome. The one syndrome called PFAPA described Jake perfectly!!
Now it's June 2009. We were on a way to Virginia for vacation when Jake got sick again. We should have known because he consistently got sick the first week of every month. He would wake up with a fever of about 104 and it was consistently stay high for about 5-6 days. The fevers wouldn't respond to Tylenol or Advil. He would also get sores on the back of his throat which caused him to not want to eat. But as soon as the episode was over he was fine. So after the poor little guy was sick most of our vacation we decided to look into the PFAPA thing as soon as we got home.
Day 1 ~ sick in bed
Burning up but still trying to smile
Trying to be a trooper but his head was always on Daddy's shoulder 
So back we went to PCH - this time to the Rheumatology Department. There we met Dr. Rosen who has been absolutely wonderful. He confirmed our PFAPA suspicions and immediately put Jake on medicine. For the past year Jake has been taking medicine twice a day. At first it caused his fevers to not be so high and the episodes to be shorter. But slowly overtime they have gone away completely!!
It's been a year now and Dr. Rosen wants to take him off the medicine and see how he responds. I'm nervous because I so don't want him to get sick again but PFAPA is something that you eventually outgrow so I guess we have to give it a shot. Wednesday was his last day on the medicine so we'll see what happens!
Moral of the story ~ YOU know your child better than any doctor. If you think something is wrong keep pushing them!! And always listen to your Mom. :-) Thanks Mom for helping fix my baby!
It's been a year now and Dr. Rosen wants to take him off the medicine and see how he responds. I'm nervous because I so don't want him to get sick again but PFAPA is something that you eventually outgrow so I guess we have to give it a shot. Wednesday was his last day on the medicine so we'll see what happens!
Moral of the story ~ YOU know your child better than any doctor. If you think something is wrong keep pushing them!! And always listen to your Mom. :-) Thanks Mom for helping fix my baby!
So glad that sweet boy has a smart nana! :) And hopefully he's outgrown it so you don't have a summer of fevers!!
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