“Rare” Form of Bipolar Disorder Results in Memory Loss and Seizures

All the signs pointed to my son, Leo, having bipolar disorder. His mood swings alternated between terrible periods of depression when he wanted to kill himself, less tumultuous “normal” periods when he was the sweetest kid on the block, and door-slamming, food-throwing temper tantrums that at age 10, were reminiscent of those days when I carted him out of Winn Dixie under my arm, with him screaming because he couldn’t have a bag of candy. These periods alternated from month to month. That, and the fact that I had been diagnosed and treated for bipolar disorder by one psychiatrist and three psychotherapists, Leo’s diagnosis seemed like a slam dunk: he had inherited my bipolar disorder. But how wrong the doctors were. He had inherited something…but it wasn’t bipolar disorder. It was a missing protein.

Getting My Wrong Diagnosis

I remember sitting in a psychiatrist’s office in 1995, describing my condition to a top-notch psychiatrist, Dr. Burkiss. Periods of depression, poor self-control (things like overspending and running my mouth), violent mood swings, periods of “elation” where everything would feel more than great.

“And another thing,” I said. This was the thing that bothered me most, more than the depression, more than the mood swings. “When things get really bad, I lose time. Hours can go by when I don’t remember what I’ve been doing, or where I’ve been.”

“Hmm,” he said.

And that was that. I could be negative here, and say that perhaps, if that psychiatrist had asked me more about that particular symptom, it might have provided him with a clue that I didn’t “fit in” to his diagnosis. But three other professionals didn’t cotton on to the fact that my illness didn’t neatly fit in with the category of bipolar disorder. Fifteen years later, after having (unsuccessfully) tried a few different medications, I tried my best to cope with my illness, which went downhill during periods of high stress.

Leo’s Misdiagnosis

Leo also had one sign that didn’t fit the diagnosis of bipolar disorder: seizures. He’d had three since he was about six years old. Apart from that, his symptoms were exactly the same same as mine. He even looks like me. My husband says I “spit a clone out.” Leo’s doctor’s were baffled with a diagnosis. They began to suspect a neurological disorder of some sort.
“Bipolar disorder?” I asked Leo’s pediatrician.
She shook her head. “That’s doubtful.”
Doubtful? I knew that bipolar was hereditary. And Leo’s symptoms were exactly the same as mine.
“I want him to see a neurologist,” she said.
I’d already paid for a (very expensive) brain scan for Leo after his first seizure. I didn’t really want to pay for another $2,000 scan unless I really had to.

And Another Misdiagnosis…

I went to see an Internal Medicine Physician, and told him that Leo and I had the same symptoms. “What do you think it can be?”
“Stress,” he said. “Or it could be pre-diabetes.”
“With all due respect, what about my son? He has the same symptoms.”
Blink, blink.
The point where I walked out of the doctor’s office with leaflets on stress and pre-diabetes was really the point when I lost faith in the medical establishment. On the one hand, I had been treated for 15 years for bipolar disorder. On the other hand, an internal medicine doctor was suggesting that I (and therefore my son) were “stressed” or suffering from “pre-diabetes.”

The Internet Provided the Answers.

I turned to the internet, and entered our symptoms into Google. A few hours of research later, I had the answer. We had reactive hypoglycemia.

To be fair to the medical establishment, the type of reactive hypoglycemia that Leo and I have is a very rare type where we are both most likely missing a protein that’s necessary for correct blood sugar regulation. I say “most likely” because there’s no research into this disorder, probably because there’s no money in it for the drug companies (too few people have the disorder to make it a worthwhile research project). I did confirm the diagnosis with a local endocrinologist, who told me he hates giving this as a diagnosis, because there’s nothing he can do.

Some hope

Leo and I both had a Glucose Tolerance Test to rule out diabetes. What the test did reveal was that our blood sugar dips low enough to cause psychological disturbances (below 60mg/dL, brain function rapidly deteriorates) A year after our diagnosis, and after switching to a modified vegetarian diet (here are some of the basic rules for the reactive hypoglycemia diet), Leo and I are 90% “cured.” The mood swings have all but disappeared. No more “suicidal” periods, seizures, or days in bed.

I thought about our string of misdiagnoses after I heard a program on NPR about the suspected mis-diagnosis of hundreds of thousands of children with bipolar disorder. And it got me wondering: how many of the 1 million kids diagnosed with bipolar disorder in the US are actually having problems with metabolizing sugar?

Reference: NPR: New Diagnosis for Bipolar Disorder

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