My son’s health and development have always been a puzzle that doctors can’t figure out. He is both Autistic and medically fragile. All too often severe medical symptoms were dismissed as characteristics of Autism. I have witnessed his health decline, watched doctor’s scratch their heads and blame autism, and have been a mad woman trying to beat the clock hoping I figure it out before he dies. For three years I fought like hell to convince doctors he was sick, and the entire time I was made to feel as though many of his symptoms were developmental.
My son had always struggled with eating and digestion, but it became scary and hard to manage at age four. My son is strictly tube fed due to dysphagia. After feedings, he would play, and I would notice that he would have trouble breathing. He would be gasping for breath, choking on air, and numerous times his lips would turn blue. My husband and I would ventilate his stomach at times up to 30 times a day to allow the air to pass through his tube. Doctors would say children with autism often have GI related issues.
His throat seemed to close up when he tried to swallow, and muscles appeared not to be functioning. Yet every time we had scans, everything seemed to be normal. His stomach was distended and gassy, but doctors blamed it on poor global motor processing due to Autism.
The next thing I noticed was his energy level that started to become reduced. He is five but always complained about being tired. He was having a hard time walking up stairs, he wanted to be carried, and we ended up getting him a wheelchair because he fatigued so quickly from walking – he couldn’t walk more than a few hundred feet at one time. Doctors said it was from hypotonia and behavioral related to autism.
Then it was his sleep. He went from sleeping really well – 10-11 hours per night – to not being able to fall asleep, not staying asleep and then up at 5 am. Doctors would say, “Well, Autistics don’t sleep.”
His heart rhythm we noticed was incredibly erratic when he was in the hospital. He would go from the 100s to the 40s. In his sleep, he would dip into the 40s, and a few times I saw the monitor go down to 38-39. Anyone that knows anything about Bradycardia knows it can kill you – so that was a part of the puzzle that haunted me the most. That was the only symptom Doctors could not blame on Autism
Next, it was the fluctuation of his body temperature. He went from a kid that had mild issues managing his internal temperature, to a child that could not manage his internal thermometer at all. As a baby, he was always perspired more than usual, but by age five he was waking up in the middle of the night soaking as if he had been in a shower
Shortly after came the complaints of pain in his hands and feet. He would barely bang something, and screams of pain would wail out of his lungs. I noticed that he was tripping, falling, and running into things more frequently. He had always been clumsy, but this was a level of awkward I had never seen.
Sensitivity to sound and light appeared to bother him more than average. He had always been sensitive to noise due to auditory processing sensitivities, but he began complaining of subtle noises like the wind while we drove or fans in the house. In the morning, he would scream when lights were turned on. He would forcefully cover his eyes, squint, and demand the lights to be turned off. I shared the concern with doctors, and they all agreed it was autism related.
So many of these things were chalked up to Autism and Sensory by doctors or therapists. Doctors dismissed his swallowing and chewing as autism aversion to food. He didn’t swallow because he was averse to food, I knew he didn’t eat because he knew he would choke. They said he didn’t like light or sound because he had sensory processing disorder. He was clumsy because he had global apraxia. His grip strength was weak, and his lack of fine motor skills was attributed to autism. In many ways, he did look like a child with sensory issues and autism-related comorbidities, but I always knew there was more to it than autism.
I knew everything he was going through was deteriorating his quality of life. As we collected more and more doctors, I found myself more and more isolated from the world around me.
As I itemized all the symptoms he had everything was related to the autonomic nervous system. Swallowing, breathing, digestion, heart rate and rhythm, temperature management, coordination, pain, and light and sound sensitivity are all controlled by our bodies Autonomic nervous system (ANS). I know that he had something causing his nerves not to function correctly, but I didn’t know what was making the nervous system falter.
I wrote a DESPERATE letter to my son’s Gastroenterologist. In the letter, I itemized each of his symptoms, and I discussed that I believed he was experiencing dysautonomia. He had been diagnosed with Chiari malformation at age 2, and I knew that it could potentially cause autonomic issues that he was suffering, but I wasn’t entirely sure if this was the case. Up to this point, no doctor seemed to believe that his Chiari was damaging his nervous system. I begged her to hear me when I said I felt like I was watching my child die. I asked her to look at the big picture of everything he was experiencing, and tell me that I wasn’t imagining a child with ANS dysfunction.
His GI doctor read the letter and had her nurse call me on Monday morning. The call was not what I was expecting to hear it all.
“Your Child does have Gastroparesis. Dr. Kennedy reviewed your note, and she agrees that your son is suffering autonomic nervous system dysfunction which has created the gastroparesis. She also agrees this is affecting his sphincter muscles from working. She has seen numerous patients in her practice come in with these same issues that also have Chiari Malformation. Many of her patients have seen improved ANS function with Chiari Decompression surgery.”
My mouth dropped to the floor. My son’s doctor didn’t just hear me – she put the last piece of the puzzle together for me. He needed brain surgery, and none of this would improve unless he had brain surgery.
A mother’s intuition is NEVER off. We always know when something is wrong, and nothing will stop us from finding the answer. Sometimes the answer is not what you are expecting or want to hear, but it’s the answer you need to save your child. I am so grateful for my intuition that was lit in my belly. That drive is what found the solution for me. Moreover, I’m eternally thankful for a doctor hearing me, listening to my concerns, and connecting the dots I could not connect myself. All it takes is one person to listen to you, validate your concerns, and show you the answer. One doctor was willing to listen to me, look at the symptoms, and not dismiss his pain and suffering as autism. One person believed me.
Don’t stop looking because someone says it’s “just autism.” Autism doesn’t make you sick. Autism is a clinical diagnosis – not a medical condition. Never stop looking, momma bears. Never stop looking.