Not having a diagnosis for your child when you know something is wrong is like driving your car somewhere you’ve never been before with no directions. All you know is the general direction, and you keep moving that way, but you’re really not sure you’ll make your destination because you don’t know how to get there. Continue reading
Greetings friends! Well, it is that time again as I am once more honored to be a part of your daily intake of reading. Although I often share the awesome craziness of our lives and how our three boys with CTD have gone through some tough spells, everything is on the right track now and this post will be a bit different. Continue reading
It wasn’t until this school year, Benny’s 7th grade year, that we realized he didn’t have the phrase “I love you” on his communication device. Benny is totally nonverbal and relies on assistive technology to communicate. He does have one approximation of “yeah” in his verbal catalog, but other than that, he uses his voice primarily to indicate feelings only— he’ll screech loudly when he’s mad his TV time is over. Continue reading
This is our story and our journey that led to our son’s diagnosis of CTD. It has been a long journey to say the least and now this new diagnosis takes us on a new path. Continue reading
Sometimes it feels like everything just piles up – from the challenges of being diagnosed, seizures, hospital stays, to the complications we encounter every day. Continue reading
If someone told me at the beginning of last November, just how much our lives were going to change in a very short space of time, I would have laughed in their faces. Or cried. I’m not quite sure which – but I certainly wouldn’t have believed them. Continue reading
GAMT is so rare, just getting diagnosed seems to be quite an ordeal. I like hearing everyone else’s journey, and having this connection. Here is our story!
Before Levi was born, I had a nervous feeling; anxiety that something was “off” but at each ultrasound things looked great and he was born a healthy baby in June of 2011. Continue reading
My daughter Holly (9) & son Isaac (4) have recently been diagnosed with Guanidinoacetate Methyltransferase Deficiency (GAMT). What a label, hey? Certainly sounds more impressive than Global Developmental Delay, Autism, or just plain old Epilepsy that we were ‘gifted’ with before. Continue reading
Well, it’s here friends, February 14th , and according to the automatic reminder on my phone, that means it is time to stop at the store and give Hallmark their due for the year. Now I am not saying that I am not romantic, but I am a guy, so romantic is a relative term. So, what does cupid, romance, and Hallmark have to do with a life full of craziness and creatinies? Well, as it turns out, not as much as one would hope but more than I could have ever imagined. Hopefully this makes sense to those of you adventurous enough to follow along with my regular postings. Basically, I would like to take a few minutes to talk about the relationship that I have with my Valentine of almost sixteen years, and how that relationship was not just shaped, but defined, by an alteration of one tiny little piece of genetic material. 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.
