About Us

It's been a few years since I started this blog.  I thought it might be easier for newcomers to get the short story here than having to wade through years worth of posts!

Click to read our introductory post.

Our son, Kaiden, has Down Syndrome and had Infantile Spasms (benign myoclonic seizures) from approximately 7 months of age to 16 months of age.  By 16 months old, Kaiden was very developmentally delayed, both cognitively and physically.  Everyone including family, friends, and doctors said it was just Down Syndrome and I needed to expect this.  But by trusting my instincts, keeping food intake and seizure logs, I eventually figured out all of the foods triggering Kaiden's seizures.  Eliminated those foods (carrots, sweet potatoes, and all nightshade foods), and not only did his seizures stop, but his development began to FLY! 

Down Syndrome gave Kaiden hypotonia and motor (limb) apraxia, and the Infantile Spasms took his speech (speech apraxia).  The seizures weren't the hardest part of this journey; even though Kaiden can't yet speak verbally and can barely sign thanks to both apraxias, it's getting others to understand that he CAN and DOES think and learn.  Since he can't respond in a way people are familiar with, they often dismiss him entirely and don't try which is incredibly frustrating!

There is SO much misinformation in mainstream medicine regarding not just Infantile Spasms, but Down Syndrome, too.  A clean diet goes a very long way, and utilizing supplements that are right for the individual helps, too.  This blog is our journey.


Urban Nomade said...

I just want to say that I love your blog. I have a one-year old with lissencephaly (most likely because of a gene mutation) who also had infantile spasms. While this isn't the same condition, I find so much of the information in your blog so helpful as we are battling some of the same issues - seizures, hypotonia, food intolerances, and allergies, developmental delay, etc.) I have found myself tearing up at your stories of Kaiden's progress and struggles. Thank you for sharing your journey publicly. Can you please share where you find information on what supplements your child needs, apart from trial and error?

Anna said...

I want to thank you from the bottom of my heart for posting the story of Kaiden and his seizures vanishing from taking nightshades out of his diet. When I was 25 I started getting epileptic like seizures and the doctors didn´t diagnose me with epilepsy. They didn´t know what it was, thought it was stress. For 10 years I didn´t do anything about it and then I started looking into if it was food since the seizures came more often. I found your former site after a while and made a bit of trial and error. After I cut out nightshades I have no seizures unless I eat them. Ive also found that I am more social now that I don´t eat them, am still an introvert but less so.