Almost since his birth, I knew that something was not quite right with my son. It was just a strong gut feeling from the beginning, but I was not sure what to do with it. The pieces of this unrecognizable puzzle didn’t fit together and wouldn’t come together for quite some time. Later, I would learn that this feeling was a prelude to my son being diagnosed with chronic illness.
I just want to urge all parents - If you think something is up with your child and things don’t feel right, take heed of the signs, listen to your gut and act on it.
So you may ask, “What does listening to your gut mean?”
Closely observe your child’s cues and signs - both verbal and nonverbal.
Track and document. Write down and document whatever seems out of the ordinary, including dates and frequency.
Do your own research.
Ask and ask again. Ask the professionals. Ask your friends. Just keep asking.
In my son’s case, there were 8 early signs that I observed and documented.
He had trouble sitting up as a baby and his muscles seemed a little floppy as he got older. As a baby, he would slide down in the high chair. As he learned to walk and run, his gait and movement looked fairly typical but still not quite right. The doctors diagnosed low muscle tone but with no concrete reason.
He would take rest breaks when he started crawling. This was definitely an interesting sign. How do you explain to someone that you think your crawling baby takes breaks. He would crawl a few feet and put his head down. Eyes were open; with a smile on his face. I just got the feeling that he was telling and showing me something. His nonverbal cues spoke to me saying: “I’m okay, in fact I’m great, I just need to rest a moment.” Those were the unspoken words I heard.
He didn’t do well in the heat. He could barely last outside for any amount of time in the summer. Twenty minutes outside and he truly looked like a wilted flower. He would come to me and say he couldn’t handle being outside. All of his friends wanted to be outside and they didn’t understand why he didn’t want to be with them when it was warm. If only they knew, he so much wanted to be with them. As a mother, it was heartbreaking to see this play out.
He would run out of energy. He would be active for a period of time and then just run out of gas, plopping down wherever he was. One time at about 3 yrs old, we had been at the beach. On the way back to the car, he told me he was done “walking.” He plopped down in the middle of the parking lot. This became a common thing as he grew older. If he was tired, there was just no moving further. He would need to sit down immediately. I now know that he was giving me a sign when he started telling me at a very young age -- “ I can’t keep going.”
He didn’t have enough energy for long play dates. Play dates couldn’t last more than an hour or two. He just had to rest and re-energize.
If he was hungry or thirsty, he couldn’t wait. There just seemed to be very little patience regardless of the time of day or even place. Yet, many foods bothered his stomach and he would complain of discomfort. In addition, he craved sugar and carbohydrates. We would later learn that this had to do with how (poorly) his body was digesting and breaking down food and (not) absorbing nutrients.
He would get a raised temperature of 99.2 easily and feel sick along with it. Most doctors are not concerned with any temp under 100.2 so they paid little attention but this just seemed odd to me, especially how sickly he felt.
His skin was always extremely pale. His facial and body coloring just did not look right to me. The paleness looked off and made him appear somewhat sickly.
Each of the 8 signs listed above seemed rather small or innocuous by themselves. However, I always had a question in the back of my mind on whether this was normal or typical. I watched and observed other kids that were similar in age to see if I recognized any of the signs in any of them. I listened closely when other parents discussed their kids. I asked friends and acquaintances about their experiences with their kids. I asked every medical professional I came across - the pediatrician, the dermatologist, the gastroenterologist, the physical therapist, etc.
No one had an answer and no one seemed too concerned either. Sound familiar? So, I started pushing the doctors for additional testing.
After pushing and pushing, the doctors finally ran additional tests and my son’s chronically ill path began to take shape. It’s been a long, slow process. But we wouldn’t have progressed, if I hadn’t trusted my gut.
Consider this a reminder to all parents….
Listen to and respect your gut feelings. You know your child best.
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.