Tuesday, May 24, 2011

When Hearing Things Is Not Schizophrenia

I received an E-mail (below) from a mother, Arna Mathiesen in Norway, who went that extra mile for her son who was hearing things, withdrawn, panicky, and dizzy for no apparent reason.  She sent me a link to an article about him.

“When he was still in a room, he would be staring and not answering.” He was having panic attacks. The doctors initially could not find anything wrong with him and repeatedly suggested that his issues were mental.

Hmmm…. Sound familiar?  A lot like (see It's Not Mental) what happened to my younger daughter?

Let’s see, hearing things that no one else hears…Staring out into nothingness. Disengaged from life around him...Claiming symptoms the doctors couldn't believe in because they saw no medical cause.  Schizophrenia perhaps? Severe Depression with psychosis? Bipolar Disorder? Schizoaffective?

Some people wonder why I accepted my daughters had diagnoses of “mental illness” and that they just needed medication “for depression,” “for bipolar,” and “for schizoaffective.” They cannot believe I was that “stupid,” or “naïve.” I readily acknowledge my ignorance.

I do not think I am much different than most other people. I have a science background. I was entrenched in the belief that the medical doctors (and psychiatrists) would help, that the diagnoses were correct—after all, their symptoms absolutely DID meet the criteria for their psychiatric diagnoses—and I, too, had hubris—I did not wish to appear ignorant, believing that any of that “alternative whako stuff” had any validity. Mainstream medical doctors and pharmaceutical companies would have been proud of me.

The point is that when doctors do not find physical problems associated with the invisible complaints of the patient, those symptoms automatically meet the criteria for “mental.”

Here is the E-mail (printed with permission):
I am the mother of Wolfie, a boy who suddenly got very ill half a year ago.

We were in and out of hospitals about 6 times, several days each time.

Every day in the hospital I was asked if it had occurred to me that Wolfie had a mental problem.

Finally Wolfie was diagnosed and had a craniotomy in the US 2 months ago.

The diagnosis was Superior Semicircular Canal Dehiscence (SSCD). Less than 10 children in the world are diagnosed with this illness. Wolfie had more severe symptoms than any known SSCD-patient. If his symptoms had not been so severe he might never have been diagnosed correctly.

SSCD (or SCDS) was first described in the medical literature 12 years ago and still very few doctors know about it, but now some doctors think it is not unlikely that the mental hospitals are full of misdiagnosed SSCD patients.

The fantastic thing though is that SSCD is curable. We came back home 2 weeks after the surgery and Wolfie has been in school and perfectly without SSCD symptoms ever since (he has just a bit weak muscles after not being able to raise his head from the pillow due to vertigo and panic attacks for 4 months.

Why am I telling you this Jeanie?

The whole experience has just been so overwhelming and I feel the need to tell anybody who can help me get out the information so that others can be able to learn from Wolfie’s story and save their children from being locked inside a horrible medical condition nobody can figure out.
Here is the link to Wolfie’s story:

Search for a cure: Norway family finds relief for son’s condition in Baton Rouge (March 22, 2011) The Advocate

Note that at the mother’s insistence, the doctors in Norway searched until they had a medical diagnosis for Wolfie, even after their first battery of medical testing came up with nothing. Their centralized government health care system pays for diagnostics and treatments, so although the small country did not have the facility there to correct Wolfie’s problem, as they do in such cases, they send the patient wherever such treatment is available – even if it is half-way across the world.

Also note that not all people with this condition have such severe symptoms. Not all are so dizzy they cannot stand. That is why the doctors surmised that patients with SSCD can be misdiagnosed and treated erroneously with psychiatric medications, as is customary when a medical cause for sensory, behavioral, and affective symptoms are not yet known.

The treating doctor commented:
One unusual condition is called “autophony,” whereby a patient may hear all sorts of noises, Gianoli said.   Body sounds like heartbeats, chewing, creaking joints and a person’s own voice will seem unusually loud in the affected ear.  “Some patients even report that they hear their eyes move,” Gianoli said. . . “Sometimes a patient can get very position sensitive,” Gianoli said. Others may develop panic attacks.
As readers of my book, "It's Not Mental" know, my husband and I were repeatedly told by the medical professionals that the bizarre physical symptoms our child was complaining of were "mental." My husband and I did not dismiss the idea that they indeed were "mental." At the same time, we did not completely dismiss the idea that, as our child stated, they were "real." Such readers will also recall it was one of our daughter's largest gratitudes during those stressful years—that at least we did not disbelieve her.

Thank you, Arna Mathiesen, for sharing this interesting story in an effort to help others.

Further Reading:

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Last Updated: 25 July 2012

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