Kirsten's Candy "Allergy"

Kirsten's Candy Jar

Must I lie to the school district??? To protect my child and to keep the peace at home!


Is it fair that only one class of youngsters must go the whole school year with no candy, treats or special parties, because one child has many allergies.  We know that some allergies can be so severe that they can result in death, and obviously all school teachers and administrators take that very seriously. So why is it so hard to understand... That giving a child who has a problem with food and weight, extra treats, is a bad thing? With the potential of life threatening consequences!


Aaarrrgghh.... My daughter Kirsten came home from school today (she rides the bus), and in her backpack was a nicely decorated jar that was about half full of skittles candy. No note or indication of how full it started out and it's Friday. On top of that, she had a goodie bag.  The candy jar was the prize for a successful guess, 280, of "jelly beans" (skittles). 


Is it so hard to understand that with Prader-Willi Syndrome (PWS), children lack control and understanding when it comes to limits on food. Why do these teachers say they understand, when clearly they do not! And why do so many continue to reward our kids with more and more candy... When obesity is a worldwide crisis?


With many children, the effects of PWS may not be as apparent, because even those with PWS have different metabolisms and environment that affect their growth, but my daughter is overweight.


To top it all off, the behavioral issues that are a part of PWS are worsened when routines are changed or when they can't have something that is theirs. What child is not going to be upset when someone takes their candy away?


It can be very frustrating! But, to try and punish all children (take away their right to treats at school) for my daughters syndrome isn't right either. My wife has seriously considered home schooling, but school has helped keep Kirsten's mind off food... Most of the time.


Prader-Willi Syndrome is hard to understand for most, because they don't live with it and... In their minds, how can a little candy now and then hurt? Aaarrrgghh... 


Most in the PWS community understand my frustration. For a mom's view on this subject, and a great comparison for better understanding, check out my friend Laurie's Blog post "It's official - I'm twice as stressed as everyone else..."

Because of this syndrome, my daughter does not burn calories as effectively as you or I, so she can not have near the normal amount of calories for someone of the same weight.  Managing her diet is very difficult, as you can imagine, and insuring that she gets the proper nutrition is also a struggle.  It is something she will deal with her whole life.  

I have always believed that if there was a chance to give her even a fraction more of potential for the future, it would be well worth it. That being said, Kirsten takes the ShakleeKids Incredivites (multi-vitamin/mineral) and Mighty Smart (100% DHA). If my family is going to use premium dietary supplements, green cleaning products, ect., I want to be able to find peer reviewed information that is available to the public, on the internet, to back up their quality.  Shaklee has this and provides these references for the whole world to see. It is in the "Clinical Research" section of their order guide. 

Terry Guinn, A Healthier You Too

Treat your family to the quality products they deserve. Shaklee products are always safe, always work, and are always green. If you would like more information about Shaklee products, please contact me, Terry Guinn, Shaklee Independent Distributor, through my website at  www.ahealthieryoutoo.com or if you would like to checkout the products for yourself, go to my Shaklee page at  www.ahealthieryoutoo.myshaklee.com 

Shakleebaby & Shakleekids

Welcome Home!

Calling all parents... Of children with Prader-Willi Syndrome. Join the fast growing Prader-Willi community on Facebook.


A recent article, related to rare diseases, was published about something that many parents have known for years. With a child's diagnosis of a rare disease or syndrome, many parents head straight to the internet for answers. And, if they have no internet experience, they quickly learn and become masters at finding answers, resources and support.  


Finding articles, reports and resources is great, but many are also looking for someone who understands their pain. Other parents, with children who have received the same diagnosis. It is not only important to have other parents to provide insight, but it sometimes helps to see the child. Reassurance that your child has hope for the future and that anything is possible. 


Up until my daughter Kirsten was five years old, diagnosed with Prader-Willi Syndrome (PWS) at two weeks, my wife has handled most of her care. Then a change in my career gave me the opportunity to get more involved. Great timing, considering some of the changes Kirsten was experiencing. So I started my search and once I found Facebook, things really took off. 


With the creation of the Prader-Willi problem & solutions exchange on Facebook by my friend Misty, and with the help of all my new Facebook friends, I was learning more than ever before.  With every question, posted resource or link and with every personal story shared, Kirsten has benefited and I feel, that we are a part of a growing family that is the PWS community on Facebook. 


In the past year I have learned from a doctor friend, a lot about social media marketing. With that knowledge I have tried to persuade more moms in the PWS community to Blog about their experience. There are already dozens of great Blogs and with every mention of PWS, awareness grows. Through friends, internet searches and search engine indexing, for popularity. Also, for those with simple video knowledge, there is YouTube (and others).  I have my YouTube channel "faroutofthebox" (if I can do it, anyone can) where parents can meet my daughter Kirsten and view my favorite videos. Or check out the channels I subscribe too (links to other parents channels & resources).  I even have a twitter and Linkedin account. Linkedin is more of a professionals network, but I have connected my Blog and promote PWS awareness in any way I can.  With Twitter, I also promote my Blog... But I am still trying to make sense of Twitter.


So why is this important??? Parents are looking for real life to relate too, a shoulder of support in some ways. They need to see that life goes on and they need to see that even though our children have PWS, they are still all different with lots of potential. Along with that, with every parent who finds their way into the PWS community, their friends are added to the audience for raising PWS awareness, and as a result, potentially their friends friends. With greater awareness, more doors are opened to potential funding for research.  


With everything we do, our goal remains the same, creating a better life for all of our children. One of my friends started a Blog called "PraderWilliVille", Janis's dream of the PWS community coming together as a family, in one real community. Many of us share the same dream and when a parent sends us a friend request, especially those with a child newly diagnosed with PWS, it is almost as if we have found a long lost brother or sister. We understand their pain, and we want to help them make the hurt go away. If we could reach through the internet and give them a hug... We'd be there!  With hugs and to offer them our experience, our research & links and to say... "Welcome Home". 

I started this Blog over a year ago to share what I have learned, experienced and to provide my insights (sometimes ramblings), but I also use it to "share only" that I am a Shaklee Independent Distributor.  Not to give a sales pitch, but to let you know that if you have a need for high quality natural products...  Vitamins, supplements, cleaning supplies, skin care, ect. I hope you will allow me to assist you. When it comes to my family, and especially my little girl who has Prader-Willi Syndrome, I trust Shaklee products to give me hope for the future.

Terry Guinn, A Healthier You Too

Treat your family to the quality products they deserve. Shaklee products are always safe, always work, and are always green. If you would like more information about Shaklee products, please contact me, Terry Guinn, Shaklee Independent Distributor, through my website at  www.ahealthieryoutoo.com or if you would like to checkout the products for yourself, go to my Shaklee page at  www.ahealthieryoutoo.myshaklee.com 

Shakleebaby & Shakleekids