K-T Syndrome: A Basic Primer

Comment Bubble

Start Here

You likely found us here because your baby was born with muted-red stains which turn deep purple at times and/or a doctor diagnosed your baby with Klippel-Trenaunay Syndrome.  I hope this is a good landing spot for you.  Welcome!

This article is the first in a series with an eye towards narrowing the information gap that K-T parents and K-T kids often talk about.  Doctors delivering babies are often not familiar with K-T.  Born in 1954, I wasn’t diagnosed until 2002.  The journey thereafter was more frustrating than the unexplained life events prior to.  Inspired to make a difference for the next K-T kid, we start here!

K-T Keynotes

I respectfully share the following keynotes which are synthesized from years of listening and living the K-T life.  These K-T keynotes* are:

  • Be patient!
  • Be positive!
  • Build strength of character in yourself and K-T kid! 
  • Professional and timely diagnostics!
  • Prevention of unnecessary or unwitting damage!
  • Personal and parental advocacy, particularly when it comes to the medical community!
  • Insist on professional diligence, system mapping, prevention and conservative care! 

This K-T Kid’s Perspective 

So what is a practical definition of Klippel-Trenaunay Syndrome?   This deeply complex medical condition is:

  1. Foundationally active only during gestation;
  2. Principally defined by venous malformations;
  3. Supplementary defined by capillary and/or lymphatic malformations;
  4. Regularly queued by varying patches of light red and deep purple;
  5. Periodically queued by veins that look like there bubbling up to the surface of the skin;
  6. Periodically queued by limbs and/or torso overgrowth or missing appendages;
  7. Clinically identified using specialized imaging technologies;
  8. congenital, non-inheritable syndrome;
  9. hidden blueprint with a propensity for complicating post-birth maturation;
  10. degenerative condition causing life threatening infections such as cellulitis and sepsis; and
  11. Often a contributing, if not the initiating, factor in muscle weakness, chronic pain, chronic venous insufficiency, locked joints, limb growth differentials, limb amputations, peripheral neuropathy, gastrointestinal bleeding, rectal bleeding, lymph blisters (commonly called blebs), stasis ulcers (commonly called skin ulcers), tinnitus, and other correlated conditions. 

Klippel-Trenaunay is wickedly unpredictable.  For reasons as yet unknown to doctors,  the K-T mechanism turns on at different times and for different durations during gestation.  Current research is focused on identifying the chromosome aberrations that are indicative of our syndrome.  We’re extremely happy this research is ongoing.  For a syndrome identified in 1900, doing so would be medical progress.  A point of clarification for those that report the source of K-T has been identified (referring to 2004 studies), these are speculative findings.  I’m reminded that correlation is not causation and these studies have yet identified, predictively how the identified mechanisms control or cause K-T.  Further complicating concrete conclusions about Chromosome 18 are the times when the identified aberration on the chromosome doesn’t result in congenital aberrations. 

What I See

The unique and varied appearances found in the K-T population may include babies with girth and length discrepancies at birth.  A fair number of  kids like me are born without these conditions.  Some K-T kids develop these conditions as they grow.   Others, side step these growth issues and their muscular-skeletal growth patterns are every bit as normal as those kids without K-T.  

Adults with K-T almost universally experience early system degradation due to aberrant blood and lymph flow.  In short, we appear to age a little faster than the general population once we hit mid-life.

The good news in 2011 is that we have several top-notch medical doctors who know Klippel-Trenaunay Syndrome.  By all means I encourage parents with K-T kids to get to these as early as possible.  You’ll find a product I developed called K-T Connections on this website.   The Klippel-Trenaunay Support Group, otherwise known as K-T.ORG, is authorized to use the connections product and may publish it on their public service forums.  This nonprofit group is the pioneer in K-T Support, originating in 1968.  It sponsors a bi-annual convention open to all including parents, K-T kids and medical providers.  Their public service forums include their corporate website, k-t.org, their facebook page, k-t.org, and their email support group service.  

– – – – – – – – – –

*Seen But Not Heard ©2011 ®2011; KTS kids ©2011 ®2011; K-TS kids ©2011 ®2011; K-T kids ©2011 ®2011, KTS keynotes ©2011 ®2011; K-TS keynotes ©2011 ®2011;  K-T keynotes ©2011 ®2011; KTS Connections ©2011 ®2011; K-TS Connections ©2011 ®2011; K-T Connections ©2011 ®2011

Letter to K-T Parents

… to the parents of kids with Port Wine Stains
… to the parents of kids with Klippel-Trenaunay Syndrome

Dear New Parents,

Welcome to my personal journal.  I have been diagnosed with Klippel-Trenaunay Syndrome.  My journey there has been unusual.  You may be feeling a bit apprehensive right now.  I’m encouraging you to take a deep breath and to trust that your journey will be easier.  Many answers to your questions will come soon, others will likely have to wait until your baby is a little older.  The good news is medical science today is so much further down the road than when I was a kid.  Even better, social networks will provide you contacts with the world-wide K-T community.  We are happy to walk the road with you.       

Let’s begin.  Was your beautiful child born with muted red and deep purple stains on their skin?  If so, are you noticing patches of color that vary in size or maybe even extend from head to toe?  When you asked the doctor, did he/she likely described these  mosaics as Port Wine Stains, Vascular Birthmarks, Birthmarks or Hemangiomas?  Did a doctor give you  a preliminary or speculative diagnosis, say Klippel-Trenaunay Syndrome.  In any case, I’m sure your level of curiosity is heightened because you don’t recall seeing other babies with similar anomalies.  I understand your interest.  If you stumble around my journal here, you’ll see that I have a deeply personal interest in helping parents of kids, as well as,  kids with  Klippel-Trenaunay Syndrome including those with Port Wine Stains,  a common manifestation of this congenital aberration.

Born in 1954, I too had a similar mosaic of color.  My parents were equally curious.  In their day access to quality medical information about babies like us meant they were given wrong information about me.  Sure, my parent’s experience could have been attributed to the relatively small number of kids with conditions like mine; and certainly the general practitioners of the day were generally taught little about these unusual conditions.  Truth be told, a curious practitioner even in those days could have provided more complete information and could have been more forthcoming.  The condition was first described by French physicians Maurice Klippel and Paul Trénaunay in 1900, a full 54 years before I was born.  

“It was, what it was” to put a twist on a modern-day expression.  As such,  I banged through my childhood and early adulthood with little practical knowledge about my condition.  I had a “birthmark”, to be exact, nothing more than a superficial stain on my skin.  Wow ….. , did my life dramatically change just after my 18th birthday.  What had been nothing more than nature’s artwork, turned out to be a stealthy cover for complex systemic aberrations.  These hidden conditions had long been degrading multiple systems within my body.  What had been explained as “just a birthmark” was anything but.  The details of what I call my early-period revelations are being saved for future writings. 

The point being made here is that you and your baby will not repeat this legacy as you have access to very informed doctors these days, albeit they’re only a handful, but they’re outstanding.  Also, you will soon meet street-level friends in the World Community.  It’s a virtual (in every sense of the word) neighborhood of soon-to-be friends.  These are KT-kids, as well as their parents, who have lived through the days when little was known and therefore are motivated and happy to share the things they’ve learned along the way.  You can find many wonderful resources listed here as various links to support groups and doctors.  A resource created by myself with the contributions of many is made available at no charge to the Klippel-Trenaunay community – look for the copyrighted name K-T Connections

Please count me as one of your new K-T friends.

Let me start simple.  I will never use the word birthmark, in any form, to describe the painted legs that define me, nor any other person like me.  That word more than anything in my life betrayed and misinformed not only this child but medical providers and, as it turned out, government institutions commissioned to care for me and kids like me.  As for your baby, know one thing for certain, like every child he/she is unique.  This is ever so true of us K-T kids.  Some of us will be challenged early, yet others will be challenged more as we reach puberty and then adulthood.  All of us will certainly be challenged sometime in our life and usually no later than midlife.  Rest assured we’ll let you know when to worry.  You’re raising a hero, which will become more and more apparent to you as the days go by.  Your child will show you strength of character many people will never understand and evidence of that strength will be your baby passing off the difficult as routine.

As a kid I always marveled at my built-in and very visual thermometers.  Muted red means warm enough for shorts.  Deep purple means cold enough for long johns.  I even enjoyed grossing out my buddies by closing down my varicose veins with one thumb while pushing the blood up my leg with the other.  “Poof”, like magic, there they were back to normal gloriously filled with blood.  Somewhere in this journal I have pictures of those veins – you’ll get the picture (so to speak) after seeing just how obvious these things are. If only then I had known I was giving my friends valuable biology lessons,  I would have charged admission to the show.  I respectfully submit that given a chance at a healthy and balanced childhood your baby will see themself as simply another kid in the neighborhood.  Yes, of course there are things they will do and things they will adopt to better fit into the picture, but what kid doesn’t do that anyway. 

A bit of personal reflection by this old man, a favorite band of mine as a young boy growing up was Deep Purple.  I say this choice was seriously subliminal as my funny colored legs didn’t define me.  Sure, there was the occasional adult who had to ask, or at least stare for what seemed endless minutes.  And, there was the once-in-awhile bully who thought the retort “cherry legs” was the best putdown he could come up with.  But, quite frankly, friends and strangers rarely took notice or cared to call me out on my funny looking legs.  I kid you not – I was regularly ridiculed about my big ears and big smile.  I was all teeth and ears.  These more regular distractions left me little time to over worry about having painted legs.

I have attended numerous conferences on Klippel-Trenaunay Syndrome, Vascular Anomalies and Vascular Birthmarks.  The one constant I have witnessed and heard is that K-T is a tricky syndrome.  The crux of the problem is that it is a congenital syndrome that takes on common traits but with wide variability as to aberration within these traits.  It impacts a wide variety of body systems.  Doctors speculate these clinical realities are because the “triggers” for this congenital syndrome turn on at different times and for different durations.  This behavior leads to the variability we see.  Some of us have K-T caused aberrations in the lower extremities, some the upper, some the torso, some right through to the neck.  K-T requires patience and thorough examinations.  It is not a superficial condition and as such it often involves complications in our internal organs and muscular-skeletal systems.  The common thread among us is our vascular abnormalities and a strong propensity to be marked by Port Wine Stains.  In its most extreme condition K-T has caused hypertrophy, hemitrophy, and/or girth differentials in a number of my K-T friends.

I’m not a doctor.  It bears stating that any counsel given here is based on my personal experiences.  In short, my condition informs my counsel.  Looking at my legs you see a condition that is bi-lateral from hip-to-toes with significant pelvic involvement.  It is multiple-system involved, including peripheral and deep systems.  These include venous, lymphatic and capillary malformations along with neurological complications.  I have 50% presentation of a Port Wine Stain on both extremities.  My deep vein is missing in the right extremity and grossly incompetent in the left extremity.  I have severe varicose veins throughout both extremities and feet – these clinically have led to Chronic Venous Insufficiency.  Additional complications for me now include chronic and degenerative peripheral neuropathy which shows in a small subset of patients.  The sad news for me is that this latter complication was avoidable; it was accelerated by improperly prescribed compression stockings, which I wore from age 19 until 42. 

My short-list advise is to stay clear of doctors whose primary experience is exclusively with Hemangiomas and Vascular Birthmarks.  The medical expertise to deal with Klippel-Trenaunay Syndrome is most often not resident in these doctors.  In no way am I discounting another group of special kids with these medical conditions and who need attention every bit as much as kids like us. Kids with Hemangiomas have very challenging lives as well and are benefiting from wonderful and relatively new technologies.  Specialized lasers are resolving these vascular tumors.  I’ve visited with several of these kids who have undergone laser treatments.  Their before pictures and live results show absolutely miraculous results.

To be clear, the treatment of Klippel-Trenaunay Syndrome is commonly more intrusive than laser treatments.  If you haven’t already, please seek out Vascular Surgeons and Intervention Radiologists who advertise Klippel-Trenaunay Syndrome in their Resume’.  The K-T Connections directory may help you get started on this endeavor.  As a general rule, avoid Dermatologists.  I mean these talented folks no disrespect, but their expertise goes basically skin deep (humor intended) and you’ll learn soon enough that Klippel-Trenaunay is a deeply systemic, deeply complex, multi-system disorder.

All this said, an Army OB/GYN Doctor advised my Mom and Dad saying, “He’s a child, raise him like any other child.”  And my parents did exactly that.  We did not know my “birthmark” was anything special then and in a weird way this naivety provided us with a useful prescription.  It allowed me to grow up with a healthy and normal ego.  And to be honest, that foundation has been far more beneficial to me than any of the downsides to not knowing exactly what was wrong with me.  Don’t get me wrong, it would have been better to know the gory details and still be raised as I was.  But given the realities of the day, the healthy ego thing has really paid off.

Congratulations on parenthood.  Feel free to ask away.  Future articles here will be a best effort at documenting my history with K-T and some hints I’ve picked up along the way. 

Your friend,
William Anton Lee

aka: Bill, Will, Willi, or anything else that gets my attention.

K-T Syndrome: A Street-Level View

Comment Bubble

My Take

When you read the professional literature on Klippel-Trenaunay Syndrome (K-T), regardless of who publishes it, the content will likely confuse you, scare you and in some cases have you in tears.  Stop for a minute here and read my take.  It’s an unconventional approach, for no other reason than this syndrome, and many of the people who have suffered through it, deserved better than the prolifically poor information passed off as subject matter expertise.  You are likely a new parent trying to understand what your child’s needs and challenges might be and you deserve better.  Take note: I’m not saying the professional literature is wrong; that’s above my pay grade, as the saying goes.  I am saying that it is way too clinical – way too focused on the worse-case scenarios because that’s what the doctors have seen – way too incomplete.

Muted Reds & Deep Purples, or Not

First, when you look at your child what do you see?  Does he/she have odd-looking reddish to purplish stains on their body?  Are these stains a single splotch of color?  Does it extend from hip to toe on a leg?  Does it reside on an arm or neck or back or buttocks?  Does the affected area look like it has veins that bubble up like grandma’s?  Does the affected area look like it’s bigger or bulkier?  Does the affected area look like it might not have developed normally as in maybe a missing toe?  Are there no stains, but one of the other things I said is a reasonable description of your son’s/daughter’s condition?  Quite bluntly, each and every one of these conditions is a plausible picture of Klippel-Trenaunay Syndrome.  It’s a very tricky and complex disorder.

Within this brief article, there is no practical way to show the wide-ranging conditions of K-T using pictures.  The variability within  the K-T community is huge.  On the flip side showing a limited number of pictures might give folks the false sense that this is all there is.  Were the public to draw this conclusion, it would be unfair to those K-T kids with conditions that are more remarkable than those presented.  All things considered, I decided to place a few pictures here because the abstract view of K-T is far more confusing than the limited view.  In time I hope to show a more complete album, although this goal is subject to help from the K-T support groups I participate in.  I’m hoping K-T friends will agree to have their story in pictures published alongside mine.

Hip-to-Toe
Both Legs and Feet
Capillary Malformations
Venous Malformations

Capillary Malformations
Venous Malformations
No Deep Vein
Peripheral Varicosities

Single Extremity
Localized Capillary Malformations
Venous Malformations
Overgrowth (Hypertrophy)

Capillary Malformations
Venous Malformations
Overgrowth (Hypertrophy)

 

 

Basic Mechanics

How does this happen?  How can K-T look so different, yet be the same syndrome?  In short, K-T screws up  the construction of our normal plumbing during pregnancy.  This feature of the syndrome is the one constant we all share and, interestingly, it is this common thread that is the basis for the wide variety in our topologies, our conditions.  Apparently, the unknown mechanism that causes K-T has a nasty habit of turning on at different times and for different durations during pregnancy.  The earlier and the longer the K-T mechanism is active the more screwed up our plumbing gets.  And the more screwed up or plumbing gets the more screwed up our muscular-skeletal systems and internal organs get.

Klippel-Trenaunay is unpredictable.  During gestation a baby develops multiple layers of body systems in concert.  A co-dependence exists between our plumbing and the skin cells, nerve cells, muscle cells, and so on.  Each of these multi-level systems relies heavily on the availability of healthy and regular capillary, vascular and lymphatic systems.  If these fail to deliver timely and balanced levels of nutrients, then co-related body systems tend to follow suit.  It’s a delicate balance .  With an over-abundance of blood delivered, an over-development of the targeted muscular-skeletal structures and internal organs often occurs.  In these latter cases, doctors use the terms hypertrophy or hemitrophy to respectively describe issues of overgrowth in limbs and the torso.  Conversely, under-development or no-development occurs when the opposite conditions exist.  There are, and will be dramatic cases where limbs and appendages don’t regularly develop.

What’s a Person to Do

To the new parent it has to be difficult to know what to do, or what to think.  If the port wine stain is the most visible sign, you imagine your baby having one set of challenges.  If your child is born with hypertrophy, you may imagine a whole different set of challenges.  These are proper feelings.  I wish I had permission to write and publish each of the many K-T stories I have been told over these latter years.  The most challenged of us Kt kids leads a life inspired.  They go to school, have a circle of friends, go to senior proms, write books, teach school, open businesses, have kids, and in many cases accomplish things kids without K-T never aspire to.  Don’t get me wrong sometimes the path-walked is scary, other times it’s easy.  What makes the going good are the parents and family that walk the road with us.          

The one constant for all of us is the “waiting game.” For most of us imaging technologies are not, as of yet, able to map the aberrant vascular structures until we’re young children.  Babies veins are too small for invasive procedures and other less invasive imaging equipment is not discreet enough to show intricate malformations.  This means that at times children are growing irregularly after birth and the underlying mechanisms that are feeding or starving this maturation remain unknown.  For others, the body remarkably compensates for aberrations and these KTS kids will tell you that they find little distinction between their life and their siblings or neighbors.

Patience and diligence are key! 

 

K-T: Fundamentally a Lesson in Human Plumbing

Comment Bubble

Why a lesson in plumbing?

The human body survives through a network of flexible pipes that are designed to (1) feed our muscles, ligaments, bones and brains, and (2) to clean up after the feeding frenzy.  Clean up returns usable material to our lungs and heart for recycling and dumps toxic waste that is unsafe or impractical for recycling.  So like house plumping,  human plumbing consists of pipes that deliver, vessels that hold, and pipes that discard.  Respectively, these features are arteries and capillaries, followed by muscles and skeletal components, and ending with capillaries, veins and lymph vessels.

Klippel-Trenaunay Syndrome (K-T) corrupts the construction of the majority of the aforementioned plumbing, as follows:

  • All of my K-T cohorts are born with venous malformations which are somewhere, but not usually everywhere.  These aberrations are not seen by the naked eye.  The exception would be varicosities to the peripheral veins which where the veins closest to the surface of our skin.  These cause our veins to puff up and become visible.  The latter condition not usually visible at birth likely shows early in childhood and continues to show more and more as we age. 

  • Most of my K-T cohorts are born with port wine stains which are patches of skin that appear colored in muted reds that regularly turn deep purple when exposed to colder rooms or colder weather.  These odd mosaics are caused by capillary malformations which when visible to the naked eye tend to be flat in appearance leading early observers to improperly call these birthmarks.  These usually do not grow in size or shrink over time – these tend to be visually stable other than the very fluid and cyclical changes in color.

  • Many of my K-T cohorts are born with messed up lymph vessels which are often not apparent at birth.  Typically the outward signs of these aberrations are mild to gross swelling of the areas where the vessels are malformed and/or lymph fluids bubbling up through the skin.  Often mistaken for water blisters, blood blisters or dark black pimples, K-Ters call the latter outbreaks blebs.  In the more advanced cases the body tissues can swell quite a bit giving the affected area the appearance of blowing up like a balloon.

It’s best to think of K-T as an active agent during pregnancy.  The difficulty in understanding its destructive force is the very nature of the components it has affected and the reality that it does its work during gestation.  The physical change it makes to veins, capillaries and lymph vessels are not generally visible to the naked eye.  Those aspects which are visible only hint at possible complications, but are not prescriptive in and of themself.  Further, modern medical technologies for most cases are not useful at birth.  Apparently, imaging technologies that peer under the skin do not accurately map vascular malformations until the child is older.  Semi-invasive technologies like venograms can’t be done on babies due to their very small veins so this procedure waits for latter-childhood as well.

People have often asked me.  Does K-T stay active after birth and continue to cause developmental problems.  I believe the technically correct answer is no.  The vascular system tends to be what it is once born.  But this is no consolation to a major segment of the K-T community because they see major changes to their babies as they grow into young children, then teenagers, and then onto adulthood.  If Klippel-Trenaunay is a gestational disorder why then do we continue to see dysfunctional changes in our bodies?  For example, why do some of us see an affected leg grow longer and wider?  Or, why do others develop problems with internal organs during puberty?  It’s the blood.  Well, to be more exact the blood delivery system.  When the hidden vascular delivery system is larger or more diffuse the muscular-skeletal components are over-fed.  This saturation of nutrients and oxygen provide the environment for disparate growth.  While K-T itself is no longer active the destructive blueprint it left behind continues to mess with our developing components.  As is the case in puberty, many of our body systems grow throughout our formative years.

The K-T story almost never ends with birth or childhood.  All humans understand this degenerative reality.  We get old and start falling apart.  This process for older KT kids (adults because we’re always kids at heart) can be accelerated by our malformations.  There’s the somewhat common varicosities that worsen as gravity becomes our worst enemy.  Bacteria that find convenient pathways to a struggling lymph system, which in turn cause complications such as cellulitis and sepsis. Constant and pervasive stasis ulcers in our feet, ankles and legs as perforater and other veins fail to support healthy maintenance of the skin.  Knees that lock and then freeze due to corrupted connective and supportive tissues.  Gastrointestinal walls that weaken and bleed through.  Rectal bleeding encouraged by regular issues with gastrointestinal failures due to impacted bowels and weak rectal tissues.  And so many more matters, as any vascular supported body systems and organs can be negatively affected by K-T impacted veins, capillaries and lymph vessels.   

This is as good a time as any to point out that typically Klippel-Trenaunay Syndrome doesn’t redesign our arteries.  So, when doctors see kids with arterial malformations their diagnosis is different. In these cases the term used is Parkes Weber Syndrome.  Although to be quite frank, the medical literature and government classification systems are slow on the uptake.  “Making the distinction is probably wise given the increased morbidity associated with arteriovenous malformations (Camila K Janniger, MD and Dirk M Elston, MD).  Doctors in the know have been making these distinctions for years, yet it seems that bureaucracies and medical school programs have failed to clean up their paperwork.  Therefore, you’ll see references to Klippel-Trenaunay-Weber Syndrome.   

It is also worth noting that some capillary malformations are in a class unto themselves. These are called Hemangiomas and more properly are known as vascular tumors. Not like a tumor that we associate with cancer. A tumor because of the clinical manifestations these aberrations have.  These tumors are capable of growing in size and in some cases can resolve themselves as well; that is, these can shrink.  Visually I see Hemangiomas as being more localized or more concentrated. Like I imagine the more common cancer-type tumors these blood tumors look like pockets of out of control body fluids contained in small sacks. These sacks are closer to the skin than the vascular malformations common to K-T. I believe you will also find these conditions described as Vascular Birthmarks from time to time and thus creating some confusion for those new to Klippel-Trenaunay Syndrome, including doctors.

A basic discussion on the physical structures of the human body may be helpful to better understand both the visual cues and the internal complications attributed to Klippel-Trenaunay Syndrome.  I’ll have to work on those.  I haven’t touched a biology book in a long time.

 

K-T: My Syndrome, My Medical Condition

Comment Bubble

… an introduction and overview

As obvious and gross (in a medical sense) as it is, every doctor who saw me from birth through adulthood had no professional curiosity to better understand its life and medical consequences. It was my own advocacy that drove me to finally locate the small group of doctors whose curiosity exceeded the others’ lazy implementation of healthcare. And even so, the wonderful doctors who finally diagnosed me didn’t have instructive materials that better defined my condition or common sense explanations of the whys and what fors.

So in my own words, Klippel-Trenaunay syndrome is a congenital and developmental, non-inheritable syndrome that is clinically identified using imaging technologies and is foundationally-based on an aggregation of vascular malformations, which may also include lymphatic malformations. These malformations, in and of themself, are counter-productive and singularly, or in combination, impair and modify the development, normal use, and long-term function of correlated muscular, neurological, skeletal, and internal life systems.

Complications from respective vascular and lymphatic malformations are known to cause chronic and degenerative venous insufficiency, progressive varicosity of the veins, recurrent stasis ulcers, blood pooling, lymphatic pooling and swelling, bleebs, rectal bleeding, G-I bleeding, life-threatening cellulitis, mild to gross hypertrophy (limb or skeletal enlargement), unequal limb development (throughout childhood maturation), compromised internal organs, peripheral neuropathy, systemic muscular atrophy (over time), and/ or other related chronic and degenerative conditions including periodic reports of complications with pregnancy and child-birth. Most find their condition unique due to differing trigger points during the gestation process, yet commonality of conditions clearly point to abnormal development and maturation, and then (in or around puberty) the beginning of life-long degenerative conditions which directly correlates to time of use of limbs or sitting, wherein such activity interferes with gravitational assistance to impaired vascular and lymphatic circulation.

In particular candidates whose condition includes the absence of, or severe incompetence of, deep veins are advised NOT to wear prescription compression garments except under the strictest care from a vascular surgeon as constriction of the peripheral veins most often causes serious neurological damage in the area of application. Likewise, any medical procedure that removes or closes down peripheral veins can not be undertaken except as the result of deep vein studies performed at the bequest of K-TS experienced vascular surgeons or intervention radiologists. To do otherwise is to risk the amputation of limbs when said peripheral veins are the only competent vascular pathway for returning blood to the heart. This syndrome advises “caution” over “expediency”, and “track record” over “genius”.

The most visible feature of Klippel-Trenaunay Syndrome is the appearance of a Port Wine Stain. While not the predominant feature that causes the complications noted above, it is a strong indicator of where (internal and deeper) vascular, lymphatic and related systems are compromised. Please note that my condition is lower limb involved, others have upper limb, trunk, and/or neck and head involvement. I’ve been told that my condition, which is bi-lateral, is less frequent. Apparently, most of those affected are not bi-lateral. It bears repeating, do not confuse K-TS with vascular tumors, which are classified as Hemangiomas and clinically marked quite differently and respectively diagnosed and treated quite differently.

It’s best to understand K-T as fundamentally your young body screwing up during the gestation process and constructing your base plumbing wrong. Specifically, it is usually your return plumbing that is messed up. Depending on when the “vascular trigger” turns on and off your version of K-T will take on very different topologies and thus complications. A quick review of human biology will remind you that the vascular, lymphatic, neurological, muscular and skeletal systems develop simultaneously and interactively. In so much as the vascular system takes on a very special role during these times, its proper construction is key to the proper development of the other systems. For us, this is the big oops! That is why for some of us muscular-skeletal complications can be so dramatic.

 – – – – – – – –

Note:  This condition is not properly defined in the class of condition called “hemangioma” or “dermatological birthmark”. Some with this condition may also have additional complications with Arterial-Venous Malformations, and if these complications are more prevalent are better classified under a different condition called Sturge-Weber Syndrome or Parkes-Weber Syndrome.

K-T: High School Biology and Beyond

Comment Bubble

By now I’m likely in trouble with my high school biology teacher; that is, trying to explain the circulatory system using a plumbing analogy and all.  I recall my biology teacher describing a closed system, a circulatory triad of arteries, capillaries, and veins.  Something about the arteries carrying blood away from the heart, the arteries connecting to capillaries, the capillaries in turn to veins, and poof, like magic, blood is back in the lungs and heart for another run-through.  He might have even addressed  the length of this magical circulatory system.  As if committing to memory facts like the blood vessels of an average child laid out in one line are 60,000 miles long and an adult’s vessels are closer to 100,000 miles long will make me a better citizen!  Well … ok, if you’re an Intervention Radiologist or a Vascular Surgeon that statistic might be helpful to know.  With fond memories of high school biology those lessons now seem a bit off, a bit to simplistic. 

Personally having Klippel-Trenaunay Syndrome has become a stark lesson that our blood-based fuel-food delivery system is not really a closed system.  I see a more exacting, more complex story about feeding, recouping and releasing associated by-products.  There’s the releasing of the food and fuel in the blood to the muscles.  There’s the proper feeding of the muscular-skeletal system.  Notably, some K-T ‘ers will tell you it’s about aberrations that sometimes result in the over-feeding or under-feeding of these components.  Others will say it’s about the body’s built-in vacuum cleaner, the lymph vessels and attached nodes that eventually release or dump very toxic material from the body.   A better mental picture is a very elaborate and multilevel system of blood vessels and lymph vessels that serve as the transport system for vital human endeavors.  In the end, it’s a story about capillaries, veins and lymph vessels and what happens when these individually or collectively are instructed by our chromosomes to develop in aberrant ways.   

Capillaries: The Feeding Bed

Capillaries are very thin and fragile; these are only one cell thick. They are so thin that blood cells only pass through them single file. Red blood cells which are inside the capillary release oxygen which then passes through the capillary wall and into surrounding tissues. When the muscle tissue is done burning up its fuel it releases waste, like carbon dioxide, which passes back through the wall and is absorbed by the red blood cells.  Here’s something K-Ters instinctively know. When you exercise your body temperature and blood temperature rises and it’s the capillaries that release this excess heat. That’s why your skin is flushed, that is, red in color.  It is also why those with K-T who have capillary malformations see the colorful stains on their body as light red at times.  Other times the blood in the capillaries carries a higher degree of deoxygenated blood and thus those glorious painted stains turn purplish in color.

Veins: Recycling at its Best

Veins and arteries have some physical similarities.  Both have three layers – an outer layer, muscle in the middle, and an inner layer. Veins are thinner and containing less tissue. Veins are weaker. They transport blood at lower pressure.  The color of blood in the veins is a deep red color, almost purple. Since the walls of the veins are rather thin, this blood can be visible through the skin at times. The veins job is to receive spent blood from the capillaries and transport this waste-rich blood back to the lungs and heart. Valves are located inside the veins to keep the blood moving in the proper direction.  Back flow is not a good idea. The valves are like gates that only allow traffic to move in one direction. These also fight the force of gravity which pulls blood back.  This is another dynamic that K-Ters all too often instinctively know about.  Vascular malformations of the veins include valves that under develop or never develop, as well as veins that are too large in circumference thus causing leakage at the valve.  In my case, the deep veins in my right leg never developed and those in my left leg were so incompetent that the blood fails to flow back to the buttocks and torso.  Did you know your butt is an important part of the venous system? Oh ya, like if you sit on it you’re cutting off a significant amount of return flow to your lungs and heart.  And you thought the big negative about being lazy was all about not using your leg muscles.

Lymph Vessel Malformations: An Unexpected House Guest

More to come in the next article – suffice it to say for now that Cellulitis is a huge problem for most KTers – if not in the early years, almost universal in our latter years.  Having a basic understanding of the lymph system is vital.

When Feeding the Lion is Dangerous

Many KTers experience complications known as hypertrophy or hemitrophy.  These folks have very difficult challenges and often seek the most aggressive surgical treatments of our group.  I’m working to gather more information on these conditions as well.  You will hear about debulking procedures, limb shortening, limb lengthening and amputations.  K-T is not an academic matter.  It affects our lives in incomprehensible ways.  Living with it is the only way to really understand its nuances. As such, I’m reaching out to several KTS kids with experience in these matters and I hope they will write and post here.  If they prefer to maintain their privacy, it is more than understandable and then I will do my best to be their voice without betraying their trust and friendship.

… the project continues, but for the balance of today I rest.

 

– – – – – – – – – –

KTS kids ©2011
K-T kids ©2011

A Doctors’ Perspective

Comment Bubble

Preface

This is a partial re-print (with headings added for readability) of a case study of a patient with pelvic and internal involvement.  Expressly for the purpose passing on one of the better professional descriptions of K-T only the definitional sections are republished here.  The complete References are also published here.  In the event you’re interested in the complete surgical procedure and related research, the original article is Visceral Manifestations of Klippel-Trénaunay Syndrome, By: Susan H. Cha, MD, Michael A. Romeo, DO and Janet A. Neutze, MD.

History

In 1900, the French physicians Klippel and Trénaunay (1) first described a syndrome characterized by a capillary nevus of the affected extremity, lateral limb hypertrophy, and varicose veins.  In 1918, Weber (2) noted the association of these findings with arteriovenous fistulas.  Some authors use the term Klippel-Trénaunay-Weber syndrome to describe the conditions affecting those individuals who have clinically significant arteriovenous malformations as a component of their Klippel-Trénaunay syndrome (KTS) (3). Other authors prefer to separate these two conditions and use the term Parkes-Weber syndrome to describe the condition in those patients who have arteriovenous malformations in addition to KTS (4).

Definition

Klippel-Trénaunay syndrome is now defined as a combination of capillary malformations, soft-tissue or bone hypertrophy, and varicose veins or venous malformations.  The diagnosis of KTS can be made when any two of the three features are present (5).  Most cases of KTS are sporadic; the syndrome affects males and females equally, has no racial predilection, and manifests at birth or during childhood (5).

Topology

Hypertrophy is the most variable of the three classic features of KTS (5).  Enlargement of the extremity consists of bone elongation, circumferential soft-tissue hypertrophy, or both (3,5,6).  At clinical examination, hypertrophy often manifests as leg-length discrepancy, although any limb may be affected (3,6).  Significant limb-length discrepancy, defined as that amount that would necessitate orthopedic intervention, is relatively uncommon, occurring in only 14% of patients in one study (3).

Capillary malformations are the most common cutaneous manifestation of KTS (5).  Typically, capillary malformations involve the enlarged limb, although skin changes may be seen on any part of the body (3).  The lower limb is the site of malformations in approximately 95% of patients (3). When found on the trunk, the malformations rarely cross the midline (3,7).  If large enough, the cutaneous lesions may sequester platelets, possibly leading to Kasabach-Merritt syndrome, a type of consumptive coagulopathy (8).
 
The vascular changes found in KTS are congenital (3).  Unlike blood vessel tumors, in which endothelial cells grow in excess, vessels in vascular malformations have normal numbers of endothelial cells, but the vessels are improperly formed and are remodeled.  Therefore, these lesions do not respond to the agents used to treat hemangiomas, and the term hemangioma should be avoided in the description of the cutaneous findings in KTS (3).
 
Varicose veins are present in a majority of patients with KTS (6).  Venous malformations can occur in both the superficial and deep venous systems (3,5).  Superficial venous abnormalities range from ectasia of small veins to persistent embryologic veins and large venous malformations (5). Deep venous abnormalities include aneurysmal dilatation, aplasia, hypoplasia, duplications, and venous incompetence (3,5).
Complications are most often related to the underlying vascular pathologic condition.  Complications include stasis dermatitis; thrombophlebitis; cellulitis; and more serious sequelae such as thrombosis, coagulopathy, pulmonary embolism, congestive heart failure (in patients with arteriovenous malformations), and bleeding from abnormal vessels in the gut, kidney, and genitalia (3,5,7).
Vascular malformations involving the gastrointestinal and genitourinary tracts have been reported and can be a significant source of morbidity and even mortality. Patients with vascular malformations of the bladder frequently have associated rectosigmoid or other pelvic organ involvement (6,9,10).  Rectal and bladder hemorrhage are serious complications of pelvic vascular malformations and have been reported in 1% of cases (10).
 
Involvement of the gastrointestinal tract may be more common in KTS than previously believed (occurring in perhaps as many as 20% of patients) and may go unrecognized in patients without overt symptoms (10–12).  Bleeding is the most common symptom reported in KTS patients with gastrointestinal involvement (10–12).  The most frequently reported sites of gastrointestinal involvement in these patients are the distal colon and rectum (10–12).  Clinical manifestations range from occult bleeding to massive, life-threatening hemorrhages and consumptive co-agulopathy.
 
Genitourinary involvement in patients with KTS seems to occur in the more severe cases.  The absence of severe limb varicosities or venous malformations does not preclude the presence of pelvic involvement (5).  Intraabdominal and intrapelvic extension of the vascular malformations of KTS frequently occurs concurrently with the lower abdominal, pelvic, and cutaneous involvement of the external genitalia (9).  Gross hematuria, which is recurrent and painless, is usually the first clinical sign of bladder involvement and frequently manifests early in life (6,9).  Vascular malformations are often located on the anterior bladder wall and dome.  The trigone and bladder neck are rarely involved (9,13).  Genital lesions usually do not cause clinical problems for patients with KTS; however, some patients who report erectile dysfunction have abnormal penile veins (14). 

Diagnosis

Imaging plays an important role in the diagnosis and ongoing evaluation of KTS. At radiography, phleboliths in a very young patient are pathognomonic for venous malformations and are manifestations of prior hemorrhage or thrombus (8,15,16). Barium studies can show luminal narrowing of the affected small and large bowel that is distensible, with a scalloped mucosal outline caused by the presence of varicosities or submucosal vascular malformations (8,11). Sonography may be used to identify the abnormal veins and varicosities (15). CT of the abdomen and pelvis provides a simple, noninvasive means of assessing visceral vascular malformations (11,15). Magnetic resonance (MR) imaging is performed to assess the soft-tissue extent of vascular malformations in patients with KTS (15). The role of MR angiography in analyzing vascular malformations in KTS has not been well defined, but the modality has the potential to depict these lesions with better accuracy (11). In cases of hemorrhage that require surgical intervention, preoperative angiography is required to define the anatomy and extent of intestinal involvement to guide surgical resection (11,12). 

Management and Genetics

Management and treatment of gastrointestinal and genitourinary vascular malformations in KTS depend on the extent and severity of blood loss (9,11).  Transfusion dependency and life-threatening bleeding episodes necessitate definitive surgical therapy.  In the case of gastrointestinal bleeding, definitive therapy involves resection of the diseased bowel.  Both partial cystectomy and conservative treatment have been successful in the treatment of gross hematuria associated with genitourinary vascular malformations (9).

It is important to note that patients with KTS frequently have additional vascular malformations beyond the classic triad of capillary malformations, soft-tissue or bone hypertrophy, and varicose veins or venous malformations.  These malformations can include abnormalities in the arteries and lymphatic vessels and in various parts of the body (3,5,7).  These variations in symptoms strongly suggest that KTS is genetically heterogeneous and affected by many factors.
 
Until recently, genetic links to the origin of KTS were lacking. In 2004, Tian et al (17) described two genetic defects in an angiogenic protein, VG5Q, in patients with KTS. This mutation, named E133K, changes the property of the protein such that it may potentially be hyperactive and stimulate angiogenesis more strongly than the normal VG5Q protein (17).  However, the genetic basis of KTS is far from being solved.  The chromosomal translocation has been found in only one affected child, and the E133K mutation is present in less than 4% of KTS patients (17).

Acknowledgments

We thank Amanda Padilla, Department of Radiology, Penn State University, Milton S. Hershey Medical Center, Hershey, Penn, for her technical assistance in the preparation of the manuscript.  

References

  1. KlippelM, Trénaunay P. Du naevus variquex osteohypertrophique. Arch Genet Med Paris1900; 3: 611–672.
  2. WeberFP. Haemangiectatic hypertrophy of limbs: congenital phlebarteriectasis and so-called congenital varicose veins. Br J Child Dis1918; 15: 13–17.
  3. BerrySA, Peterson C, Mize W, et al. Klippel-Trénaunay syndrome. Am J Med Genet1998; 79: 319–326.
    CrossRefMedline
  4. MaariC, Frieden IJ. Klippel-Trénaunay syndrome: the importance of “geographic stains” in identifying lymphatic disease and risk of complications. J Am Acad Dermatol2004; 51: 391–398. CrossRefMedline
  5. JacobAG, Driscoll DJ, Shaughnessy WJ, Stanson AW, Clay RP, Gloviczki P. Klippel-Trénaunay syndrome: spectrum and management. Mayo Clin Proc1998; 73: 28–36. Abstract/FREE Full Text
  6. BaskervillePA, Ackroyd JS, Lea Thomas M, Browse NL. The Klippel-Trénaunay syndrome: clinical, radiological, and haemodynamic features and management. Br J Surg1985; 72: 232–236. Medline
  7. Al-SalmanMM. Klippel Trénaunay syndrome: clinical features, complications and management. Surg Today1997; 27: 735–740. CrossRefMedline
  8. GhahremaniGG, Kangarloo H, Volberg F, Meyers MA. Diffuse cavernous hemangioma of the colon in the Klippel-Trénaunay syndrome. Radiology1976; 118: 673–678. Abstract/FREE Full Text
  9. FurnessPD 3rd, Barqawi AZ, Bisignani G, Decter RM. Klippel-Trénaunay syndrome: 2 case reports and a review of genitourinary manifestations. J Urol2001; 166: 1418–1420. CrossRefMedline
  10. ServelleM, Bastin R, Loygue J, et al. Hematuria and rectal bleeding in the child with Klippel and Trénaunay syndrome. Ann Surg1976; 183: 418–428. Medline
  11. WilsonCL, Song LM, Chua H, et al. Bleeding from cavernous angiomatosis of the rectum in Klippel-Trénaunay syndrome: report of three cases and literature review. Am J Gastroenterol2001; 96: 2783–2788. Medline
  12. SchmittB, Posselt HG, Waag KL, Muller H, Bender SW. Severe hemorrhage from intestinal hemangiomatosis in Klippel-Trénaunay syndrome: pitfalls in diagnosis and management. J Pediatr Gastroenterol Nutr1986; 5: 155–158. Medline
  13. FuleihanFM, Cordonnier JJ. Hemangioma of the bladder: report of a case and review of the literature. J Urol1969; 102: 581–585. Medline
  14. LeePH, Kellett MJ, Bailey MJ, Pryor JP. Case report: Klippel-Trénaunay syndrome as a cause of erectile dysfunction. Clin Radiol1996; 51: 596. CrossRefMedline
  15. KantermanRY, Witt PD, Hsieh PS, Picus D. Klippel-Trénaunay syndrome: imaging findings and percutaneous intervention. AJR Am J Roentgenol1996; 167: 989–995. FREE Full Text
  16. AzouzEM. Hematuria, rectal bleeding and pelvic phleboliths in children with the Klippel-Trénaunay syndrome. Pediatr Radiol1983; 13: 82–88. CrossRefMedline
  17. TianXL, Kadaba R, You SA, et al. Identification of an angiogenic factor that when mutated causes susceptibility to Klippel-Trénaunay syndrome. Nature2004; 427: 640–645. CrossRefMedline

K-T: Conditions presented at Birth

Comment Bubble

Preface: K-T is so diverse that even those with visually like attributes will have deeper disparities as doctors take a closer look.  Please take care in generalizing from information provided here.  I guardedly present my story because so any KTS kids have told me similar stories.  I get the sense that many of the kids track as I did and do.  But to say that all kids have or will follow my gestation, development and maturation path would be very disingenuous.  I do encourage an open mind and heart.  Technology exists today that will give doctors good information about the condition of your child.  But, K-T is tricky.  Its underlying mechanisms may not reveal themselves until later in the child’s life.  I was 18 or so before K-T related issues negatively affected my life.  Some kids, particularly those with hypertrophy or hemitrophy show as early as birth.  Yet others, don’t show until their legs, arms and frame begin to grow.  Time is on the one hand our friend, but it can also be our nemesis.  We need lots of patience and love.   

. . . . . . . . . .

My birth was unremarkable.  Well … , other than the nurse who “stole” me away before my mother could see me.  After awaking from a short nap Mom asked to see me.  In comes the transport cradle with me tucked in nice and warm.  No problem, right?  Not so quick.  The nurse immediately leaves without saying a word about my condition.  I’m told my poor mother screamed like hell when she removed me from the cradle and saw my legs for the first time.  Apparently, Mom thought I was bleeding to death.  I can’t even imagine how shocking it was for her.  It’s 1954 and here she is a women with a sixth-grade German education discovering her new-born baby looking like me.  It’s particularly sad knowing she was left with no explanation or preparation by the doctors and left to her own experiences to explain the unexplainable.  Surely, today’s medical providers are sharper than this and if not shame on them.

At birth these things could have been said:

  • Your son has a bi-lateral Port Wine Stain (PWS) from hip-to-toes.
  • This Port Wine Stain covers 50% of each leg and the entire pelvic region.
  • This condition does not cause pain and it’s best to think of it as birthmark until we do further testing.
  • Feel free to treat him like any other baby. He won’t break, bleed or stop breathing.

As a side note, lymphatic swelling was not evident at birth.  Hypertrophy or differential limb size were not evident.  Underlying chronic vascular anomalies in both legs and feet were undiagnosed and worse, not even suspected.

K-T: The Heredity Question

Comment Bubble

My family history with K-T:

  • I’m the first and only known case on both sides of my family – father and mother.
  • I have two biological children born WITHOUT K-T and otherwise very regular (9 APGAR).
  • I have two biological grandchildren born WITHOUT K-T and otherwise regular (10 APGAR).

Klippel-Trenaunay is a very likely a genetic aberration, which is under study.  I believe the chromosome aberration will be found soon, as genetic research is getting amazing results in general.  I’m betting that the aberration is environmentally-caused or simply random chance.

If you’re a new mom or dad, please know that there is NOTHING you did to cause this condition.  There is NOTHING in your family gene pool that caused this condition. Please don’t go to your grave, as my mother did, with any second thoughts.  Nature just does some really funky stuff sometimes.

I may be proven wrong about the heredity thing, but I doubt it.  In over a thousand K-T births not one child shows a family history of Klippel-Trenaunay, me included.  Sure, there is some evidence that once in a blue moon there is a possible family link.  These findings are very, very sparse.  I would say even statistically improbable.

 

K-T: Conditions presented during Childhood

Comment Bubble

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
  • Light-Headedness
  • 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