Let’s pick up the conversation here with a quote from an early article. It’s telling and foundational, all in a good way.
“All this said, Mom and Dad followed an Army Doctor’s advice – “He’s a child, raise
him like any other child.” And they did exactly that. Who knew my “birthmark” was
anything special then, yet in a weird way this mis-diagnosis ended up with a useful
prescription. It allowed me to grow up with a healthy and normal ego.”
I played all sports including contact sports. I rode bicycles. I climbed mountains and rock cliffs. I delivered newspapers including walking more miles than I can remember. I survived the obligatory dog bite in the butt while delivering newspapers. I shoveled snow for my senior customers. I mowed yards. I collected and recycled newspapers and magazines, revisiting my newspaper route customers on a regular basis. I attempted to swim and my failure to accomplish this to any reasonable standard of competence had nothing to do with Klippel-Trenaunay Syndrome. I slept in an unheated attic converted into a bedroom. Yes …, it was extremely cold; what else should a kid expect living in the Washington, DC area. My brothers froze right along side me. I still replay in my dreams those mad morning dashes to the living room heater vents where our feet and clothes fought for space on very small vent grates. In the summer I wore the shortest of shorts – oh my how funny these look by today’s standards of fashion. My “summer tan” was so dark I often felt like the “color” in my legs disappeared. I suffered the usual collection of scrapes, cuts and bruises resulting in the usual application of bandages. In short, I had a very regular childhood.
In hindsight the only downside to having Klippel-Trenaunay Syndrome as a kid was the quadruple cramps I would get when running longer distances. I was a fast runner. Had to be. When you’re the shortest and smallest kid in the neighborhood you learn to fight or run. Dad didn’t favor fighting too much, so I ran. An obstinate kid, it wasn’t like running from the fight, it was more like na, na, na, na, na … you can’t catch me. Fortunately, these mischievous endeavors were over short distances. It was in high school when I tried to convert this kid’s game into a Cross Country run or a 1/2 mile sprint that I ran into that infamous wall. Only my wall came up way too early! I mean like holy crap what is going on here. Not so much fun when you hit the deck with the muscles in your leg taking turns proving which one can tighten smaller than the rubber band on the coach’s desk. We stuck to basketball after that. Although basketball remained a pick-up sport – that darn short-kid thing stuck with me until my senior year in high school. What’s up with that? How do you go from 5′ 6″ to 5′ 11″ in one summer. I can’t say it enough, this kid didn’t know he was supposed to be different because his legs were stained or painted. I was more than aware that I simply was tiny. If I had a cross to bear, it was being a geekish, short kid who wanted nothing more than to be able to play on his high school basketball team. Well … , there might have been the big ears and big teeth thing, but I tended to take even that in stride by the time high school finished. I repeatedly tell parents, there is little doubt that the occasional stare or question is not really that big a deal. If you as a parent stay focused on regular kid stuff, so likely will your kid.
There were a few things that I experienced as a kid that I attribute, in retrospect, to Klippel-Trenaunay Syndrome. These were:
- Constant Low-Grade Temperatures
- Chronic Headaches
- Regular Nose Bleeds
- Minor Swelling of the lower extremities
- Skin Warm to Touch
- Skin Sensitive to Topical Compounds
- Undiagnosed Irritable Bowel Syndrome
- Frequent Rectal Bleeding.
- Severe Muscle Cramps when running over long distances
But again, I thought these were normal kid problems and so did my parents. The key point I guess is that we dealt with it and moved on. A kid could begin to think they’re a bit wimpy dealing with these, but that likelihood decreases with a proper increase in “regular attention” to other matters any kid brings to the table. In short, my Dad used to say, “If it’s not bleeding or broke, than get up and play on.” Basically, if it bled, we washed it with soap, covered it, and played on.
Knowing what I know now, I would advise the same as the Army doctors with one nuanced addition – infection in Klippel-Trenaunay can be seriously impacted if exposed to nasty bacteria these days. Sterilization of cuts and scrapes is far more important than we realized. And, I would religiously apply my old doctor’s brown sugar bandage as a first line of defense. I will write more about his little miracle in another article, search for it using the key words “brown sugar”.
That said, listen carefully to your kid. Watch intently without being obvious. KTS kids will tell you when to be concerned – they are amazingly in tune with their young bodies. There are no right answers – we KTS kids are all very different. It is advantageous to be conservative, yet I caution over-protecting your child will have negative social and psychological consequences. I hear this message repeatedly when other KTS kids speak up about their childhood.
– – – – – – – – – –
KTS kids ©2011
K-T kids ©2011