“A Boy and His Dog” -Laura

02Sep 2020

Pioneer. Verb. A person who is among the first to develop or be the first to use or apply (a new method, area of knowledge, or activity). Parent or grandparent of an individual with special needs, do you feel like a pioneer? Well, you are!

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11Aug 2020

Education is one of the key parts of our mission here at the ACD. This “Creatine Decoded” blog post gives a brief overview of a topic near and dear to many of us as CCDS parents: what science and psychological theory say about what therapies work for our kiddos related to their behaviors. The ACD recently held a webinar focused on supporting parents in the CCDS community in regards to challenging behaviors.  I’m not sure about you, but we have seen an increase in behaviors the past few months in our house!

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15Jun 2020

“School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t answer him, he’ll just keep going.   Continue reading

02Jun 2020

My son recently said my name for the first time. I don’t mean he called me Mommy. He says that about a hundred times a day, even when he gets a response. He said my actual name. Continue reading

19May 2020

When it became clear that I would be caring for my son into his adult life, I knew that I had to make sure my body and mind would be ready for that. I knew I had to be as strong and durable as possible. Continue reading

06Mar 2020

The following is our journey into using Medical Marijuana (MMJ) with our son who has CTD, autism, and epilepsy. For those of us in OH, this is a new option in the treatment of seizures and most of us have little to no experience in the medical use of this product. In talking with other families, I realize that there’s a lot of confusion, stigma, and fear, but also curiosity, surrounding the use of MMJ in the treatment of epilepsy and other conditions, so I thought I would share what I’ve learned thus far on our journey with MMJ. Continue reading

05Feb 2020

I wanted to talk a bit about something that my son said to me last year. This surely stuck out in my mind as important to share here. I’m sure a large number of readers are parents or caregivers of a loved one with a creatine deficiency. Some parents may have more than one child. And given that every family dynamic is different and each affected child is unique, this is just our own family’s experience that led to this topic. Continue reading

20Jan 2020

Pictured: Dr. Sonja Sucic from the Medical University of Vienna presenting on pharmacochaperoning at the Creatine Deficiency Workshop in Rotterdam in September 2019

Being a CCDS/CTD mom, I understand that it can be very easy to put a huge amount of hope in the idea of prospective treatments. The exciting news is that it’s not just a cliché to say that we can each make a difference. Our individual participation in the research process is vital and necessary to help researchers in the quest to find a cure for CTD. There are researchers around the world working on innovative new ideas for therapies that could really work to help our loved ones. Providing access to patient data is in our hands as parents and caregivers, and it is not an understatement to say that if we don’t do our job, the researchers can’t do their jobs. 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. Levi came into our lives while we were looking for a permanent home, and when he was 6 weeks old we purchased our first house and made some much-needed renovations while living in it at the same time. Did I mention we had a 6 week old?! Ugh! What were we thinking with the timing of all of this?! Ha!
We finally decided we would get a dog when Levi and any future kids were old enough to ask for one, really want one, and help take care of it.
Fast forward fifteen months when Levi started having seizures. We were doing EVERYTHING in our power to get them under control, or to stop them altogether, but it just wasn’t happening. One day, my Dad suggested Levi needed a dog. His exact words included “a therapy dog”. That caught my attention! I know dogs can be healing, and comforting. I looked into it and WOAH!! Pricey is an understatement! So, we kept it in mind – Levi needs a dog. We continued the treacherous path until diagnosis, and with that came a breath of air for all of us. We were then researching side effects of going without creatine, and permanent struggles that may come with GAMT. With it being so rare, there weren’t any definite answers as we came to find out each case and child with GAMT is unique with their conditions. So, what was left to do? Get Levi a dog! When he was 18 months old we found some adorable Labradoodles for sale near our home. They weren’t ready to leave their mom yet, so we continually visited and played with the puppies to see which one picked Levi and vice-versa. These dogs obviously weren’t trained therapy dogs, but our hope was that it would be just the right thing for our little guy. The cutest pup would always go to Levi. He would chase him and chew on his pant legs. It was amazing that time and time again this same puppy would go to him and love on him.
Although Levi didn’t verbally ask for a dog, and he definitely couldn’t help care for him, it was the BEST thing we did for him after his strenuous journey to a GAMT diagnosis.
Meet Stanley!
They continue to be the best of pals, Levi and Stanley. It is great they have also allowed little brother Sawyer in on the bond. We will forever be grateful for the gentle nudge from a grandparent who knew what was best, and for the amazing family dog we now have!

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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.