January is Thyroid Awareness Month, made possible by the American Association of Clinical Endocrinologists (AACE). Micah (MicahBoyGenius) and Eli (Baby Genius) have congenital hypothyroidism (CH). Yes, Micah also has the diagnosis of autism spectrum disorder (ASD), but I don’t know of too many bloggers who have children with that specific dual diagnosis. I am hoping to help some other parents with children who may be having growth delays or other medical issues as well as ASD.
You may recall seeing these little memes of my geniuses on MicahBoyGenius in September, during the Magic Foundation’s #growthspurt2013 campaign:
Throughout the month of January, I will be blogging and posting helpful information on Facebook I have found in peer reviewed articles & studies regarding the prevalence of hypothyroidism in our ASD kids. I was also asked to guest blog our personal story for Hypothyroid Mom after commenting on an interesting article about CH posted on her page.
First, I’m compiling as much information as possible about our story before submitting my blog post to her because I think it’s important I can cite some good credible sources for readers to see the whole picture. It’s not about CH “causing” autism, it’s about the importance of knowing the signs of CH and getting your child properly tested when they are having health issues commonly considered “normal” for babies/toddlers. FYI: lethargy, poor feeding, constipation, and prolonged neonatal jaundice aren’t “normal.” All children, including our ASD children, deserve a chance to grow & develop without dealing with these preventable health concerns.
One year prior to Micah’s ASD diagnosis, after many medical issues, we sought out a second opinion for Micah’s apparent health conditions. We are SO glad we did. We found out he had almost zero (as in nada, zilch, none) thyroid hormone (T4) and this was likely the cause of the many health concerns he was dealing with at the time. We knew nothing about “biomedical treatments” because we weren’t looking for it. Our first concern was his health. The regression and lack of communication were last on our list of concerns. Sure, we wondered why he stopped speaking and making eye contact at age one…but the jaundice, poor feeding, and sleeping 24/7? Yeah, those were a clue that something wasn’t quite right with our little guy. Our suspicions were even further confirmed after Baby Genius was born in June 2012. I wrote a little bit about that in a previous blog post called, “The Tale of Two Geniuses.”
After being in the special needs/ASD community for few years, I think it is interesting how many people have a very negative attitude toward treating an ASD child with any type of biomedical treatment or even getting bloodwork to check for food sensitivities and/or other medical issues. It’s as if they are afraid they will be looked down on as trying to “cure” autism instead of just normal parents trying to help their child. I say all of this because one of the very first tests that are done on ASD children is a thyroid panel. Hello.
Wouldn’t you want to know if your child was suffering from a treatable endocrine disorder? I would. Maybe if I would have heard the term “biomedical treatments for autism” and googled it before going to the second opinion doctor, I may have cancelled my appointment. Whew…it’s brutal out there. Honestly, when we started this journey, I’m glad we had no clue. If we had, my son may still be sick. Daddy Genius keeps it literal around here, so he needed “proof” before he would even agree to a GFCF diet change. lol
What I appreciate about that first doctor we saw was, she didn’t give us a “miracle cure” and his current doctor doesn’t make any promises either. He often will say, “autism research is still very new.” We see him every 6 months for developmental follow ups and he even gives us names of places we can get the cheapest vitamins/supplements – even though he sells them in his office and could probably make a fortune off us.
So, during the month, as you read about our journey and get more information on thyroid health, I hope you bear with me and soak in as much information as you can.
Carry on, geniuses!