Creatine Community Blog

03Jan 2018

I love reading special needs blogs. They have lifted me up and carried me through some really tough years with my son. Ironically, it’s been awhile since I’ve written for this blog. I have tons of content up in my brain…. but last year I struggled to put those ideas into blog entries to help lift up all of you! Continue reading

29Dec 2017

Amy and son

At the end of the year, I like to reflect back so I can look forward and plan for the new year. 2017 has been a challenging, yet rewarding year for our family. Like any other family, life moves at warp speed sometimes, but things tend to slow down near the holidays. While every day is an opportunity to reflect and be grateful, I still like to take the time to reflect on what life has offered us as the year comes to a close. Continue reading

14Dec 2017

Levi and brother on Santa's lap

There was a time I wondered if we would ever experience “normal” holidays with our cute Levi. We would, of course, go through the motions of every holiday and give him those experiences, even if he did not understand or know what was going on. I am soooo glad we did because I am telling you… this is the year! Continue reading

01Dec 2017

Ben sitting on steps

After learning about our son’s Creatine Transporter Deficiency (CTD) this past January, we started down the path to begin supplementing with a set of amino acids. When you’re diagnosed with CTD and there is no treatment that reverses its symptoms, this is the most common treatment you can try, apart from therapies and other methods. Whether or not it makes any difference for a CTD child is inconsistent, and varies greatly depending on who you talk to and which scientific study you read. Regardless, for us, it was one of those things that we knew we’d rather try than miss out on a potential opportunity – and they have since become part of our everyday life. Continue reading

20Nov 2017

As we approach the holiday season, it is customary to reflect and give thanks for the blessings we have. It’s also the season of giving and a time of year when many open their hearts and wallets to share in their blessings and give back to many meaningful charities. Continue reading

18Nov 2017

This story was shared with #MyGivingStory in connection with the Giving Tuesday initiative. #MyGivingStory shares the stories of everyday heroes giving their time and talents to the charities they love.  Continue reading

24Oct 2017

Trevor and I both grew up with dogs as family pets. We knew we would one day get a family dog, too. We wanted to get one soon after marriage, but with crazy college life and living in a rental that did not allow pets, it was easy to put off. Continue reading

02Sep 2017

Spiro holding his lunch bag in the kitchen

Do you ever have those days or seasons where things are just ‘alot’? I know my family goes through those days. They are hard moments… they seem consecutively laid and they are heavy. Alot of people I know have kids. I don’t walk a day in their shoes, nor do they in mine. But over the years I have come across those folks who complain about… well… in my opinion what would not even qualify as a bad day in my house. Continue reading

26Aug 2017

picture of ben smiling

I thought it would be beneficial to share a profile of our four, almost five, year old boy with Creatine Transporter Deficiency (CTD) named Ben, who presents without seizures. All our CTD kids are different, so this is by no means a profile of CTD, but rather, a profile of our kid with CTD. I hope this helps others searching for a diagnosis and provides awareness of what CTD means to a family like ours. Here is a day in the life of Ben. Continue reading

 

Disclaimer: All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor's opinions and not those of the Association for Creatine Deficiencies. The ideas expressed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to actual health care experiences of the contributor. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.