Friday, July 23, 2010

#3 PANDAS continued.…….

“Alex’s doctor wants to talk to you today,” Tania, my stalwart assistant informs me.

“Which one?” I ask. This clarification was important as Alex’s mother had now consulted at least four physicians/specialists plus the ever present Dr. Internet.

“Well, let’s have a look see, shall we?” Tania chirps.

I hear the unmistakable click click tap tap of computer keys.

“That would be Dr. W.” she clarifies. “Do you have her number?”

I did but I could not help but have an uneasy feeling. Mrs. P had taken Alex to a well known PANDAS expert for diagnosis confirmation plus the most up to date treatment protocol. Alex had been on antibiotics for a week and from all accounts was making remarkable progress. Her repetitive behavior had reduced significantly and I was hoping for a quick and full resolution. Mrs. P had been aggressive and rapid in her response. She had latched on to the PANDAS idea and had become a lay expert in an incredibly short period of time. Consequently, she had been in almost daily contact with questions and reports. She was a bit of a nervous Nelly but who wouldn’t be after witnessing such dramatic behavior changes in their child?

“Mrs. P is going too far,” Dr. W blurted with little preamble.

I suspected she was referring to the daily e-mails and blow by blow tic reports that were cc’d to the group of professionals Mrs. P had assembled.

“Every small flick or head toss the mother is attributing to PANDAS and is pursuing more and more involved treatment. I saw Alex this week and she is perfectly fine,” the doctor continued.

“Well, it is still pretty early in the treatment,” I countered. “Mrs. P does not understand the long range view and is trying to calm her anxiety by having a back up plan.”

“ No way,” the physician argued. “Something has to be done. I think we are dealing with a case of Münchausen syndrome by proxy.”

Oh boy. Münchausen syndrome by proxy (MSP) is a condition where someone, usually a caretaker or parent, invents or exaggerates medical symptoms leading to excessive medical procedures or unnecessary treatment of their charge. It is a particularly twisted form of child abuse but I am reluctant to jump on the MSP bandwagon. Not because I want to ignore potential child abuse but because the label is thrown around way too often when a parent is a little overbearing or if the mother (in particular) is persistent about a course of treatment her physician does not support. The more mysterious the illness, the more often one hears about suspicions of MSP.

I wish the doctor had just said she couldn’t stand Mrs. P and had blown off steam the old fashioned way by calling her a witch or a pain in the butt but that would have been unprofessional. So, instead, she had to hide behind this devastating charge of serious mental illness.

Mrs. P did not have MSP and Dr. W was not a bad doctor, they were both just wielding the tools they had but the result was about to get ugly. I spent the next few weeks bouncing between the two of them (usually via e-mail) emphasizing common goals and places of agreement. Mrs. P started relaxing as Alex’s tics continued to diminish. She dropped the idea of pursuing further experimental treatments and agreed to a monitoring program instead. Dr. W. with further input from the PANDAS expert, developed a deeper understanding of the condition and was able to help Mrs. P evaluate neurological symptoms that could signal a recurrence of strep.

Alex finished a long round of antibiotics and recovered completely. Ironically, Mrs. P calmed down enough to realize she did not need so many doctors and got rid of Dr. W. first.

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