The Danger Spiral

An ongoing topic in our home is Mr. C’s current poor gut health. There are a lot of things that can possibly be at the root of everything. Recently something new popped up on my radar. Pediatric Abdominal Epilepsy.

This is a fairly new topic, even in the medical community. My mother-in-law has told stories of often being in the hospital as a child due to a “nervous stomach.” Since not much was known at the time about gut health, simply managing symptoms with diet and/or medications has been the main process for many children’s ‘tummy ache.’ Then studies taught about allergies and irritable bowel, now common household terms. For a while now, it has not been uncommon to hear of the ‘brain-gut’ connection, many times in association with issues like gluten intolerance. This can be especially true when you have children with autism. Many times they do suffer from gluten intolerance or other diet issues. Our family tried going gluten free to attempt to manage both boys’ symptoms before they were officially diagnosed, with no noticeable changes. At times friends, who are learning of our circumstances, try to be helpful and suggest trying gluten-free. This is a nice gesture; however, we’ve been there, done that.

An article found on Johns Hopkins Medicine, which I highly recommend reading, said regarding the brain-gut connection:

“Hidden in the walls of the digestive system, this “brain in your gut” is revolutionizing medicine’s understanding of the links between digestion, mood, health and even the way you think. Scientists call this little brain the enteric nervous system (ENS)… The ENS may trigger big emotional shifts experienced by people coping with irritable bowel syndrome (IBS) and functional bowel problems such as constipationdiarrhea, bloating, pain and stomach upset. “For decades, researchers and doctors thought that anxiety and depression contributed to these problems. But our studies and others show that it may also be the other way around,” Pasricha says. Researchers are finding evidence that irritation in the gastrointestinal system may send signals to the central nervous system (CNS) that trigger mood changes.”

This is fascinating to me. This could have a huge impact on our family. C’s mental health has been plummeting the longer his gut is ignored. As his parents, we felt that he had so much going on that we needed to resolve just one thing to try to lighten his load mentally and decided to focus on figuring out his gut health. That has been our focus. Maybe, oddly enough, we are on the right track after all to helping other aspects of his health as well.

What does this have to do with Abdominal Epilepsy? Children’s Health Hospital defines abdominal epilepsy as:

“…an extremely rare, chronic (ongoing) condition that causes recurrent seizures that are not the result of another medical condition. The seizures can happen in the stomach and intestines and are more likely to occur in children than adults. “

Spectrum News mentions that:

“Autism frequently co-occurs with any of a long list of other conditions. But none may be more closely linked than epilepsy. Nearly half of all autistic people have epilepsy, according to some reports, suggesting that the two conditions share underlying biology. For example, both conditions are characterized by overly excitable brains…People with epilepsy are also more likely than others to have autism: A Swedish study of more than 85,000 people with epilepsy found that autism is 10 times more common in those individuals than in the general population…Several studies suggest that children who have both autism and intellectual disability are more likely to have epilepsy than other autistic children.”

Lastly, Wikipedia describes the most common symptom as:

“…abdominal pain followed by uncontrollable vomiting, usually preceded by lethargy. Symptoms also include generalized tonic-clonic seizures followed by sleep, confusion, and unresponsiveness.”

Now, I am no doctor, but I am a concerned mother. As a concerned mother, I research and read a lot of articles looking for clues that might help my child. This has proven beneficial in that I have aided in getting his diagnosis; however, it can also backfire and cause numerous nights of sleeplessness as I worry about the what if’s.

Mr. C has been struggling so much lately that we meet with his developmental pediatrician monthly as we try to find a good balance in medications and mental health. He has been wonderful in only adjusting one thing at a time, but as we do that, are we missing a bigger issue? Is his gut so unhealthy or getting unhealthier as days go by which then makes his mental health unstable?

After his past medication adjustment, we have seen an increase in an “upset tummy” or even full-on nausea, which leads to vomiting a few times and then fatigue for the rest of the day or even a nap shortly after. I’m not saying he has abdominal epilepsy, in all likelihood he just needs to take his medication with food, but the symptoms are similar enough that I plan to bring them up at his next appointment.  Maybe, his doctor will agree it’s worth a test or two, to rule things out. I like knowing one way or another. It gives me peace of mind and maybe we can find an answer with an easy treatment.

In my research on abdominal epilepsy another new term popped up on my scope: Absence seizures.

The Mayo Clinic describes absence seizures as:

“Absence seizures involve brief, sudden lapses of consciousness. They’re more common in children than in adults.

Someone having an absence seizure may look like he or she is staring blankly into space for a few seconds. Then, there is a quick return to a normal level of alertness. This type of seizure usually doesn’t lead to physical injury.”

And Wikipedia states:

“Absence seizures are brief (usually less than 20 seconds) generalized epileptic seizures of sudden onset and termination. When someone experiences an absence seizure they are often unaware of their episode. Those most susceptible to this are children, and the first episode usually occurs between 4–12 years old. It is very rare that someone older will experience their first absence seizure.[citation needed] Episodes of absence seizures can often be mistaken for inattentiveness when misdiagnosed, and can occur 50-100 times a day. They can be so difficult to detect that some people may go months or years before being given a proper diagnosis. There are no known before or aftereffects of absence seizures”

Of note, is that these types of seizures can be set off by a period of hyperventilating. One thing that C does often is loads of heavy breathing while amid a meltdown or tantrum.  At times he does in fact hyperventilate.

I personally have not noticed anything that could lead me to believe C has absence seizures, but considering the commonality of co-morbid diagnosis with autism and other learning delay’s, as well as C’s long list of issues, I feel strongly this is something I would want to watch for. Maybe even have the doctors test for. I hate not knowing things. I need to know, for C’s sake, for all our sakes. What does his future hold? Did I find something worth following through on, or am I spiraling in the “know enough to be dangerous” type of mothering?

Published by brianna480

Hi, I'm Brianna — Wife, chef, cleaning lady, teacher, crafter, DIY-er, multitasker and a Stay-At-Home-Mom of two quirky kids. My husband and I have been happily married just over 20 years and continue to grow together. We try to live a simple life. We have a small home, a bit of land, a dog and chickens. We live in a small community and life here can be calm and peaceful, or hectic and crazy at the drop of a hat. A quirky kid is a one who doesn’t fit the mold or conform to what you would think a stereotypical kid would act like. They see the world differently, act differently, and, due to a lack of understanding, may be labeled as a “bad kid.” We love our "quirky kids" and every day with them is an adventure. Sometimes I laugh at things they do, sometimes I cry at things they do and, sometimes, happy hour starts early at my place!!

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