What is Pediatric Recurring Fever Syndrome?

What is Pediatric Fever Syndrome?

Fever Syndrome or Recurring Fever is a fever of unknown origin. This condition usually occurs once a month or every few months and the child will generally have no other symptoms. My son Dylan has had fever episodes since he was born and has recently been diagnosed with an Auto Immune disorder (Recurring Fever Syndrome).

Dylan four years old.

Dylan four years old.

Dylan is my youngest child, he is 10 years old and in the fourth grade.   The minute he was born he came into this world screaming, wanting to be heard and he made sure we knew it.  He still has this feisty temperament like his mama. His first word was “No!”

I guess he would need this spit-fire personality given what he has had to deal with during his childhood. Dylan has had fevers on and off since he was a baby.  When I say fever, I mean more than the norm with no other symptoms.  When he was 4 years old he had extended fever episodes over a period of 3 months.  He was hospitalized and they ran every test possible and they could not figure out what was wrong. He continued to have fevers as he got older and every trip we took to the pediatrician, I’d get the same response; “he just has another virus.”  I grew tired of hearing that he just had another virus, arguing with his doctors demanding second opinions. Something in my gut was telling me that something else was going on.

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At 8 years old, Dylan had a period of intermittent fevers that lasted 7 months. This is when I met his current Pediatrician who felt that something was definitely going on with Dylan and it was not normal to have these fever episodes.  I started to cry – even though I didn’t know what he had I felt that I was finally getting somewhere. He said he could have Familial Mediterranean Fever or Periodic Fever Aphthous Stomatitis Pharyngitis (PFAPA). He referred me to an Immunologist, Geneticist, Oncologist, Hematologist, and Infectious Disease doctor. It seemed overwhelming having to see all of these specialists, but I was glad that there was a possibility of getting a diagnosis after all of these years.

Even though Dylan was finally getting some validity it was only the beginning of all of the blood tests and doctor appointments to come.

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After seeing all of his doctors, they indicated that he has an Auto Immune Disorder but he did not meet the criteria for Familial Mediterranean Fever or PFAPA – but he did have something in common with these two fever disorders. Blood tests revealed that Dylan has had consistent elevated C-reactive protein and Sedimentation rate or (ESR) which are prevalent in fever disorders. Dylan will have the C-reactive protein and Sedimentation rate elevated even when no fever is present. Dylan was classified as having Recurring Fever Syndrome or Fever of unknown origin. His doctor explained to us that there are many kids in the United States with Fever Syndrome and they are still doing research on fever disorders.

Finally, we have some kind of diagnosis – an Auto Immune Disorder and Recurring Fever Syndrome.  It is still not easy and when he gets a fever and I get a little nervous and monitor him like crazy after all he is still my baby and no mother likes to see her kid sick. It has been quite a journey with a lot of worrying and doctor visits, but I’m thankful that Dylan is an active, normal kid and aside from his fever issues, pretty healthy to boot.

This is only my story – as with any health condition related to your child, see a doctor and be persistent until you have clear answers. Use these 5 tools for your next Dr.’s visit.

DW2

Latina Mama Rama

Comments

  1. Adriana Flores says:

    I Hope A Cure Is Found Soon. I Know How Frustrating It Can Be For A Mom When A Child Is Sick. God Bless!

  2. Hmm interesting, I have not known about this syndrome. Sorry to hear about that but I am glad to hear that he is better and that the worst is behind him~! I will be praying for him. Saying hi from the monday blog hop!

  3. Hello:
    Thank you for sharing this post about your son. I also have a PFS (probable TRAPS). My symptoms didn’t start until I was in my 30s. I couldn’t imagine how tough it would be to be a child with this condition or a parent with a child with this condition. Wishing you all the best!

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