Tuesday, September 17, 2013

Navigating the Maze

Last night our pediatrician returned my husband's call from earlier in the day. Part of our game plan, was to take my radiologist-brother's advice and start with a physical exam. We know that my son's hearing is fine. It's been six months since Colin's last check-up and we want to see if anything has changed physically.

When hubs first called to arrange for an appointment, the nurse spoke to the doctor and called back. We were advised to take my son for a full psychiatric exam. I was furious when I heard that!

I had spoken to the doctor briefly, a few weeks back, during my middle son's yearly exam about my youngest son's disorder that popped up over the summer. Our conversation was hurried due to a packed schedule, the doc never heard of Misophonia, scribbled a few notes and promised he would look into this disorder.

Fortunately hubs had our pediatrician call us directly. He reluctantly set up an exam for next week. We were also advised to "dial it back" a bit and let the professionals make their own diagnosis. We've been trying to find a Pediatric Psychiatrist with no luck and our doctor thinks the issue is telling them about "Misophonia".

Keep On Keeping On

Hubs also had a conversation with our Cognitive Behavioral Psychologist. He is the one that put us on the path of Misophonia. Last week my husband had spoken with a Neuro-psychologist, who had not heard of this disorder, and she had promised to look into it and touch base with our psychologist. True to her word she had a conference call with our psychologist. They were both concerned about the lack of knowledge and treatment options for miso. My husband briefed the doc on the steps I was taking. We were advised we are doing the right things and to keep on the path.

My Part of the Plan

I had contacted the Department Of Psychiatry at The Ohio State University. When I explained my son's condition, I was advised to contact Children's Hospital Department of Neurology. I was also given the phone number for the university's Neurology department.

I spoke with a front-desk staff member at the Pediatric Neurology department. She had never heard of Misophonia and listened intently as I went into a detailed description. I made sure that they treat S.P.D.s (Sensory Processing Disorders) which they do. I was promised a call back after a discussion with the doctors to see who (or what ) would be best option for my son.

I am hoping to hear back today.

I feel a bit like a hungry lab rat in a complicated maze. I will hit a bunch of dead-ends, get caught in a few loops, and bang my head a few times. However, I will not give up until I find my piece of cheese. I will not dial it back! I can not sit back and let dispassionate professionals control our future. My son is in pain and our family is in crisis. Misophonia has upended our lives.


Hell hath no fury like a mother on a mission.

We are a work-in-progress!

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