Hi Jenn,

 

My heart goes out to you, can not imagine what is like to worry about your young daughter.  I do not have children, hopefully some in our group that do, can be of  help to you.  Denial is a big stage of dealing with pkd and trying to live life.  My prayers are with you, whatever you decide, I pray you feel inner peace.  Hope you can join us in chat, we chat on sunday, tuesday, and thursday nites at 9 pm eastern.  Please keep us updated on your daughter.

 

Best wishes, Sue

Hi Jenn

 

I'm 41 and I have PKD (diagnosed in Dec 1995).  My mother has it (now 67 no problem other than body shape and high BP).  My 9 year old son was diagnosed this year, as his ped'n wanted him tested for family history.  My 6 yr old son has no signs yet, but as my mother's side seems to be 100% aceptance of the gene, I'm not holding out much hope.  My wife wants me to take him out of all physical contact sports, but "why" as I must have been where he was at his age and I had no problems.  As he gets older we will have to limit things, but hopefully research and medicine will have taken that into account.  Good Luck and drop me a line if you want to chat - any time!

 

Sean

  My wife wants me to take him out of all physical contact sports, but "why" as I must have been where he was at his age and I had no problems. 

Sean, there are so many sports, why is it so important that your son participate in the contact sports? We've been advised to stay away from judo, wrestling, boxing, American football, and, if you are in Canada, see how violent the kids' hockey games can get. I know that it's difficult to want to keep your child safe without making him/her feel different. It's important to stay away from contact sports so as not to damage a kidney. After all, if your child has PKD, it will probably get damaged enough  by the PKD.

 

If you go to the PKD Foundation web site you can download a PDF version of one of their publications. Click on the PKD Patient's Manuel.

 

Books Available Online Although the "PKD Patient's Manual" is the only book available online at this time, others will be added soon. To order free printed copies of PKD Foundation books, please contact Allison Bogart at [email protected] or 1-800-PKD-CURE. PKD Patient's Manual If you click on one of these, you can download audio versions of some of the presentations from the 2006 conference.   Barb

 

Sean,<o:p></o:p>

My brother and I both participated in judo for 8+ years as kids and teenagers; I only gave up judo in order to participate on the high school varsity swim team (practices were at the same time).  We were avid cross country skiers and skied to school all winter (lived in <st1:country-region w:st="on"><st1:place w:st="on">Norway</st1:place></st1:country-region> as children).  We also did a lot of ice skating, played ice hockey and bandy, and built our own ski jumps to use with our short “stumpe�?skis.  I added downhill skiing in college.  My brother was also in jujitsu, was an avid rock climber and still is an active hiker and sea kayaker.  We both participated in team sports, albeit non-contact sports (swimming and baseball), but the non-contact aspect was simply due to no interest in American football or wrestling (I still prefer soccer over football).  And as most siblings do, we rough housed on a regular basis at home (we’re less than 18 months apart in age), at times putting serious wrestlers to shame.<o:p></o:p>

We both have PKD.  Granted we weren’t diagnosed until we were in our mid-20s (18 years ago) when my brother fell cross country skiing (in <st1:State w:st="on"><st1:place w:st="on">Arizona</st1:place></st1:State> of all places!).  An earlier diagnosis of PKD may have changed our mother’s approval of the judo, but I suspect she would still have allowed it to a point and let us decide whether to continue on our own as adults.  In fact, I was scheduled to start a new judo class the week after I was diagnosed with PKD; despite being asymptomatic, I decided to forgo it and spent free time skiing in Lake Placid, New York, instead.  <o:p></o:p>

<o:p> </o:p>

Over time the sports activity have diminished; age, work and PKD have all played a factor.  I stopped skiing in 1998 when I was transferred from <st1:State w:st="on">Colorado</st1:State> to <st1:State w:st="on">Florida</st1:State> and took up scuba diving, both the basic and advanced course, diving to below 90 ft off the coast of <st1:State w:st="on"><st1:place w:st="on">Florida</st1:place></st1:State> (absolutely incredible experience!).  I would probably still cross country ski if I lived in snow country (not a lot of snow in northern <st1:State w:st="on">Virginia</st1:State> where we live, a suburb of <st1:place w:st="on"><st1:City w:st="on">Washington</st1:City> <st1:State w:st="on">DC</st1:State></st1:place>).  My nephrologist (a former Navy diver) has limited my dive depth to 30 feet and would prefer I took up snorkeling instead, but it’s a moot point as there’s not a lot of opportunity for scuba or snorkeling around here anyhow.  My brother still sea kayaks, although at times he finds the snug fit of the waterproof seal uncomfortable.  And I’ve very unsuccessfully tried waterskiing with my in-laws (fell flat on my face too many times to make it fun).  <o:p></o:p>

<o:p> </o:p>

With the exception of the skiing accident which led to the PKD diagnosis, neither one of us have experienced any kidney problems or cyst ruptures due to sports, either as children or adults.  Maybe we were just lucky.  Or maybe our kidneys could withstand the contact as kids whereas they wouldn’t today.  <o:p></o:p>

<o:p> </o:p>

But I will tell you that learning to fall safely in judo is a skill I still use reflexively today.  If a fall is inevitable, I am able to use those skills to avoid injury to my kidneys and absorb the impact with the rest of my body instead.  That may not be a good enough reason for someone with PKD to take judo, but it’s served me well all these years.<o:p></o:p>

<o:p> </o:p>

Kids want to participate in the sports their friends do; they don’t want to sit on the sidelines and be labeled as sick or different.  And kids are very resilient.<o:p></o:p>

<o:p> </o:p>

As you know, most people who have PKD are not diagnosed as children; it’s usually in their 20s or later.  Yet they’ve had the disease their entire life and somehow survived childhood and all the games and rough housing that goes along with it.  And while your family seems to have “won�?the wrong lottery with everyone thus far inheriting PKD (so has mine), hopefully you’re 6 year old son will be spared.<o:p></o:p>

<o:p> </o:p>

My vote would be to allow your children to participate in any sport they want at this point, provided they wear the appropriate protective equipment and follow the safety rules.  Participating in sports and teamwork will serve them well in the future.<o:p></o:p>

<o:p> </o:p>

Best wishes,<o:p></o:p>

Ruth<o:p></o:p>

i agree..with letting them be kids...i fell off horses and wrecked motorcyles and it didnt kill me ..i dont agree with making kids into aniexty ridden beings, dwelling on illness...the bad times will come soon enough..let em  laugh, love and live!