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August 3, 2013

What is J.O.R.R.P.?

So, should I keep my kids away from your kid?

No. There are ZERO cases of child-to-child transfer, or even teen-to-teen, via kissing, drink sharing, slobber, pacifier stealing, toy gumming, etc.

Why do you tell people your child has J.O.R.R.P.?

Why wouldn’t I? There are only 6,000 active cases of R.R.P. in the United States. (R.R.P. adult onset = A.O.R.R.P., juvenile onset = J.O.R.R.P.) If I can help ONE less person to feel isolated & alone in this journey, which has already happened, then my mission is accomplished.

How do you know he didn’t get it from you?

I don’t. H.P.V. is a tricky thing. There are hundreds of strands, and tests & vaccines only protect against a handful of them. Moreover, the human body typically fights off H.P.V. within 2 years of acquiring it. (A virus is with you forever, but your body “beats it”, per se, and it then lies dormant within your body.) So, did I have an active case of H.P.V. at the time of his birth? I don’t know. Did I have one of the many strands of H.P.V. that a test will not find? I don’t know. I do know that I never had a positive screen for H.P.V., and I have been blood tested every year for a decade. Even at the start of my pregnancy, my blood work & PAP smear both indicated all was well. I also was given a round of the GARDASIL vaccine at the start of my pregnancy, before I knew I was pregnant. Did the GARADSIL vaccine cause this? I don’t know.

So, what now?

     Well, nothing. We wait & see. My son is 2 years old, and he was diagnosed with J.O.R.R.P. at 6 months. He has removal surgery every 3 months. I will never forget the look on the ENT’s face when he did his first throat scope that day. I’ve never seen a doctor look scared before. I’ve never seen a doctor look confused. I’ve never heard a doctor say he doesn’t know what it is, or how to handle it. Not things that give a mother warm, fuzzy feelings. His exact words were, “Your son’s throat looks like a 50 year old man who smokes 2 packs a day.”

      I spent the next few weeks in blinding fear that he had throat cancer. I’m not sure how many parents know what it’s like to wake up every day wondering if their child stopped breathing in the night. All moms of newborns, certainly, but this condition is not something that exits your mind after 3 months. Since my son is still (mostly) non-verbal, I don’t know if he feels like he is barely sucking air through a straw when he plays with his brother & friends, or swims in the pool. I don’t know how much his throat does, or doesn’t, hurt after his operations. I don’t know if certain foods cause him pain.

     I do know that I made the decision, almost immediately, that I wasn’t going to treat him differently because of his condition. I have heard from many adults who were sickly in childhood tell how their parents behaved as though they were inside plastic bubbles, and the life long mental/emotional problems that it caused them. Do I monitor his condition closely? Sure. Of course! But, I am so… careful… not to hover, not to make him feel unusual, and not to excuse all of his normal childhood antics “because he’s sick”.

     * If you have any other questions, I’ll post another informative link here, and I have also noticed there is a lack of support groups around. So, feel free to contact me as well!


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