On February 22, 2013, a beautiful baby boy completely rocked our world.
He was our perfect little angel face who brought us so much joy. We had read and heard the stories of many others who had children who had Down syndrome, and we were ready to embrace this journey, both with its challenges and its innumerable blessings.
During his first year and a half of life, we had moments, like all parents, when we wondered if he was progressing as expected, not necessarily compared to his typical peers, but compared to his peers who had Down syndrome. He used to cry through entire sessions of physical therapy, and we found this wasn’t everyone else’s experience in Down syndrome groups. He seemed to struggle more with gross motor skills than most babies who had Down syndrome. As the months went on, he started to blow raspberries while staring at his hands for prolonged periods of time and shake burp cloths and socks back and forth in front of his face. These were his early self-stimulatory behaviors.
He also was very sensitive to loud, sudden noises, not uncommon to children who had Down syndrome or just children in general. Nevertheless, I found myself looking up signs of autism spectrum disorder (ASD) and worrying off and on if this was an additional challenge he might face. He was making progress with communication and in all of his therapies, so I tried my best to ignore the stress of an additional concern. The occurrence of ASD with Down syndrome seemed to be something that the medical community was trying to understand, and it was confusing since some symptoms of autism could be found in children who had Down syndrome but not necessarily ASD.
During these times of worry, his natural charm and uniqueness would ease any fears. We were so thankful that he was ours.
At around a year and a half, he started developing eczema on his cheeks, which we were never able to fully heal. We tried prescription creams given by his pediatrician and dermatologist (one we saw had a side effect of increased risk of skin cancer with sun exposure, so we quickly stopped that one), homeopathic remedies, and any over-the-counter creams we could get our hands on. We looked up all of our household products and switched to safer and milder soaps and detergents. Nothing seemed to work consistently. Thankfully, it didn’t seem to bother him, and he carried on in his usual happy, calm, and content way.
Six months later, we were in the process of moving homes, and I was pregnant with our second child. During all of the fun, my husband, Thomas, became sick with the flu, which resulted in two infections and two courses of antibiotics. He always had a bit of a sensitive stomach, but all of a sudden, things had departed greatly from the norm. He was having trouble sleeping, trouble with digestion, and almost any food you could think of started becoming a trigger food to make him sick. This often resulted in an increased heart rate, abdominal pains, indigestion, and weeks of being sick to his stomach. Things were definitely off. He began losing weight without trying.
Six more months later, we had a new beautiful baby girl named Georgia, and life was very different for all of us, including big brother.
James was also starting school for the first time and was exposed all of the various germs that come along with that. One of the viruses he caught turned into an ear infection and then later a sinus infection, which we fixed with two rounds of antibiotics only about a month apart. Around the time he first became sick, things started changing for James. He started having more outbursts when Georgia first came home, understandably, but they really picked up steam after he became sick.
All of a sudden, we couldn’t finish songs that he enjoyed or favorite parts of books- two of his most favorite activities- without screaming and shutting the books as fast as possible. Stimming behaviors went way up. Any excessive noise, especially from Georgia, would put him over the edge. And on bad days, he could become mildly aggressive toward me and do some self-injurious behaviors. On top of the newborn stress, we were beside ourselves with what had happened to our sweet boy.
We did our best each day to adjust to our new normal, and we also decided with the school transition, it would be a good idea to get him an aide. I took him to an agency to sit down with a psychiatrist and see if he qualified for the aide service. During the visit, I spoke with the psychiatrist, and James gave a great babbling monologue that only he understood while turning a block from side to side to look at its reflections.
With insurance changes, we found out later we were unable to go with that agency, but we did receive a report in the mail about a month later.
I read through the report with interest and disdain, as my own words seemed to be turned against my son. Most anyone who has a child with special needs understands the pain of reading about your child and perceived challenges in black and white and feeling like whoever wrote the report completely missed the point and has no idea who your child actually is. Then at the bottom of the report, I saw that the psychiatrist had assigned him a new diagnosis- moderate autism spectrum disorder.
My world stopped a bit, as I felt the stabbing pain in my chest. How could he so freely just assign that to James? He didn’t know him. Hadn’t even interacted with him for more than three seconds. If he had actually gotten on the floor and tried to play with him, he would have heard the words he’d worked so hard to have, see his ear-to-ear grin, and witness his comedic personality.
In speaking to the people who knew James the best, they were in disbelief with the additional diagnosis. It had never crossed their minds. With ASD given out more frequently, especially when trying to get more services, we decided to ignore the report.
I actually physically ripped it up, but it obviously didn’t leave my head and my heart. More and more I saw the symptoms that I wanted to ignore. Though he interacted with adults and older children, he didn’t seem to care where his peers were or what they were doing, he didn’t play with toys appropriately for his age, he had lots of sensory sensitivities, and he never pointed to things he was interested in. All of these things were magnified with his new heightened emotional state. Yet I did my best to put it all in the back of my mind and write it off to a new sibling, his age, or all of the recent changes.
I couldn’t keep it in the back of my mind for too long, as he needed to be evaluated for his transition from at-home therapies to integrated preschool.
After he was observed in his preschool setting, the evaluator wanted to speak with me. She was concerned. James had inconsistencies. Why was he fine sitting on his teacher’s lap but then crawling away from her and every other adult in the room? He wasn’t participating the way she would have expected someone with Down syndrome to. He couldn’t stand up for himself or ask for help when a peer took away each of the toy cars he had carefully collected. She didn’t say ASD, but we both knew what she meant.
That conversation was a turning point for me. When James was first diagnosed with Down syndrome, we at first thought of the challenges that he might face. But instead we learned of stories of the inherent joy and the social and emotional intelligence many of these children had. We heard stories of people who had Down syndrome comforting those in need and easily connecting with people. The things many told us would be so great with Down syndrome might now be challenges for James. Our world had just been flipped upside down. I sobbed the rest of that day.
That was the start of our dark days. I probably cried just about every day for the next few months. I missed my calm, happy boy and every scream he gave took away a piece of me. To make things worse, my sweet baby girl had an infection that put her in the hospital with heavy-duty antibiotics for nine days and prophylactic antibiotics for a few months after. (Thankfully, at that time, we at least knew to pump her up with probiotics!)
My husband couldn’t eat anything and was dropping weight like crazy. My son was an emotional wreck. I was an emotional wreck. We had no idea how we got here.
Putting the pieces together
Around James’ third birthday, his stools became awful every single day. A few times, I wondered if I should keep him home from school in case he had a virus. But they persisted way past the course of a typical virus. We started wondering about the eczema, the stools, and if James’ situation was anything like Thomas’. Maybe he wasn’t tolerating a lot of the foods he was eating. After a lot of Internet searching and speaking with others who had battled eczema, we decided to implement some diet changes, starting with eliminating dairy.
That same week of no dairy, his teachers told me he wasn’t crawling away from them. He was more willing to try the activities at school and was more focused and receptive. WHOA. Just from dairy? This was the first real sign to us that showed how much of an impact food can have.
We had him tested for all of the typical allergies, but nothing popped up. This was a bit frustrating, as it would have been great to have a definitive answer. We did some more testing through an integrative health dietician and found that he had an extreme case of leaky gut. Leaky gut is basically when food permeates through damaged intestinal lining and gets into the blood stream, which causes an immune reaction in your body. This helped to explain the eczema, terrible stools, and extreme irritability. We did a food sensitivity test for him, and just about everything under the sun proved to be problematic. No wonder he was so miserable. Thomas was the same.
We went through a long stage of eliminating just about every food, literally only giving him six or seven foods that he could tolerate. This is probably the worse thing you can do for someone with leaky gut, since the safe foods can turn into problematic foods. However, the fear of the reactions to problematic foods (eczema flare ups, bad stools, more outbursts) outweighed the promise of a long-term plan.
Somewhere during this process, God guided us toward the wonderful world of functional medicine and its potential for healing. Each practitioner in this world had their own story of how they landed there, and we were hopeful that we could really get to the root cause of why these boys were struggling. We drove to Florida to see a renowned physician for Thomas, and we found a brilliant, caring physician in New Jersey for James.
We’ve started to learn about genetics, toxins, and how it’s possible to control gene expression with a healthy diet and environment. We’ve experimented with all kinds of supplements and foods, had a lot of failure, and had some pretty amazing successes.
For James, every time we’ve had a breakthrough in supplements or diet changes, we were reminded of his natural calm and joyful self, and without fail, his teachers couldn’t get over the unbelievable progress he was making at school. We realized that our number one therapy was his food. When his nutrition was appropriate, and he wasn’t rejecting specific foods, everything worked better.
The past couple of years have been extremely humbling and enlightening. In many ways, we are thankful to be on this journey, as it has allowed us to see and begin to understand more clearly the health struggles of others. Thomas started to see a pattern in his own physical therapy patients through this journey. Many of his patients unable to heal from chronic pain were also dealing with GI issues. All of this has prompted him to pursue further education in nutrition to better his own skills as a practitioner.
For our personal journey thus far, any past breakthroughs never seem to go the distance in terms of healing. And diets are still extremely limited and unsustainable for the long haul.
So with encouragement from some families who have gone before us and a whole lot of faith, we have decided to start the GAPS (Gut and Psychology syndrome) diet as a family, which is a gut-healing protocol. It’s completely grain free, and you start with only meat stock and certain veggies, yogurt/kefir, and sauerkraut juice, all homemade, to starve out bad bacteria and work to rebuild the intestinal lining. Slowly, you add additional foods, as you are able to tolerate them, and work up to the full diet (still completely grain free).
Dr. Natasha Campbell, a neurologist and neurosurgeon who moved into the world of nutrition when her son was diagnosed with autism, created this diet and moved her son off of the spectrum. She has since helped many others significantly reduce symptoms of IBS, autism, ADHD, dyslexia, and other conditions, and for some, essentially eliminate symptoms.
The primary reason we are doing this diet is to heal the boys’ (and girls’!) guts, but with the established gut-brain connection, we are super curious about what happens with everything else.
We’re going to document the fun and the crazy, so follow along if you would like 🙂