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Just because one doctor doesn't know doesn't mean you're crazy

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I remember being told to sit in the restroom and would rock through the pain. In the 70’s/80’s medicines were different and I was given liquid Paregoric syrup. Fast forward 30 years and I’m watching my son go through the same thing at 11 years old.

My dad and I grew up with chronic stomach pains during childhood and now my son.

We spent a year in hospitals and in ERs trying to figure out the pain. In previous years, before it progressed to crippling pain, he participated in research studies on the bowel trying to pinpoint the issue. It wasn’t until we visited an urgent care center with my son doubled over in pain that a doctor said something to me that changed our focus – Abdominal Migraine.

We immediately scheduled an appointment with our Gastro-Specialist who promptly informed us that Abdominal Migraines weren’t real and that it was just a “catch-all” for indiscernible pain. He admitted my son to the hospital again to run tests – fecal analysis, endoscopy, colonoscopy, x-rays, blood tests and yet everything came back NORMAL.

We had exhausted his expertise.

We were “dismissed” as a patient and told to go to the ER if the pain continued – and it did. He would get the attack usually on a Sunday night and they would last for 5+ continuous days with no breaks. The only relief would be hospitalization with morphine administered. Not what a mother wants for her 11 year old but the pain was unbearable.

I took videos of him rolling on the ground.

I began to journal about his triggers – to write down foods or vents that would set him off.

It was always triggered by something stress related. A test at school, baseball tryouts, my leaving town for work.

We started counseling to see if he could be taught coping skills to help. They did not.

After spending a week at home with him after he’d missed 22 days of school already (we were 3 months in), he was home having an attack and I had to meet with his teachers and principal. I broke down for the first time during that meeting. I cried and cried at how I wanted to help him but I couldn’t. I had held it together so he wouldn’t see me upset but I couldn’t go any longer. I had tried acupuncture, CBD oil, peppermint oil, homeopathic remedies, multiple drugs and even hypnosis. I was a mother out of options. There was one thing I hadn’t explored. If this was a type of migraine then maybe, just maybe, a neurologist could help.

I found a pediatric neurologist who specialized in migraines, took my insurance and had immediate availability.

We drove across town to meet her. She talked to us, took notes, looked at my journals and smiled. “Yes, I can help you.” I think I probably cried but I don’t remember.

She prescribed a low-dose migraine medication and an anxiety medication. She said that he was suffering from abdominal migraines, and YES they are real, which was being triggered by anxiety. Once the anxiety triggered the migraine, it would have to run its course. She could help minimize the number of migraines as well as the intensity until he would grow out of them.

We noticed an immediate impact. His next attack only lasted 3 days and he didn’t have to be hospitalized – we were given a cocktail of drugs to use at home. She also gave me the flicker of hope I needed – this condition has never been seen beyond puberty so we only had about a year left.

What I learned is that abdominal migraines are seen in about 3% of juveniles.

They are more prevalent in females.

They are hereditary as are migraines but are always outgrown through puberty.

She did say that they usually manifest in to headache migraines through the bodies maturity but, because my dad and I do not have migraines, my son likely wouldn’t either.

Many with this condition are never diagnosed because there isn’t a test for it, it is diagnosed after ruling out other more serious conditions such as Chrohn’s or GERD.

My son thankfully hit puberty shortly after his twelfth birthday and, just like that, we have not had a single attack!

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