Thursday, February 17, 2005

Tin God Syndrome: The Siren

Today, Wren had her second appointment with her new neurologist.

For those of you who aren't up to speed, Wren is my 8-year-old daughter, and she has Tourette's Syndrome, PDD (a high-functioning autism) and Sensory Integration Dysfunction. Her TS is genetic; my husband and father-in-law have it as well. So as you can imagine, I know a great deal about TS.

In any event, I wasn't too impressed with Dr. M the first time we saw her. She didn't seem to know very much about TS, and after a few minutes admitted that she mainly treated kids with epilepsy. She was eager to help Wren, though, and as she managed to give us the one thing we wanted (an antidepressant to help her with the sudden, intense attacks of depression and sleeplessness), I considered her to be a good choice for our local neurologist. I say "local," because we are fortunate to have access to the country's foremost expert on TS, and we see him every year when we travel out East. He diagnosed and treated my husband, and he treats Wren as well. He is FANTASTIC. I cannot sing his praises highly enough (see, I don't hate ALL doctors, lol). Still, it's important to have a local specialist, too. If there is an emergency need, a doctor 2500 miles away isn't much immediate help. And Dr. M, while not very knowledgable, seemed capable enough of carrying out the expert's orders and dealing with any issues that might arise in between our yearly trips out East.

Or so I thought...until today.

The first sign that this appointment wasn't going well came when the nurse was taking Wren's blood pressure. Now, my daughter has never had a haircut in her life (where I come from, it's considered to be bad luck. I don't consider myself to be a particularly superstitious person, but I just can't bring myself to cut it. It doesn't hurt that she loves her hair and has no desire for a haircut...and that her hair is absolutely gorgeous. When down, it reaches to just behind her knees. Yes, it's THAT long). Naturally, people comment on it all the time, usually along the lines of
"What beautiful hair you have!" or "Wow! That is some long hair! How long has she been growing it?" We're both used to those kinds of comments, and let's face it: we're both gals, and we both beam when we hear them.

The nurse, however, didn't ask how long Wren's hair had been growing. Instead, she said: "If you put a little feather in that braid, you'd look just like Pocahontas!"

Heaven help me.

I said nothing...maybe I should have said something, like
"Excuse me? You do realize that I'm a Native American, don't you?" But mindful of my promise to Jonathan and to my own doctor to avoid stress...I kept my mouth shut. But man oh wasn't easy.

Then came Dr. M. This was our first long appointment with her. She asked about Wren's tics: the frequency, the types, how they affect her day-to-day life. I answered as thoroughly and precisely as I could. Wren was actually ticcing pretty bad throughout the appointment, so the doctor got to see some of the tics herself.

After the game of Twenty Tic Questions, the doctor put down her pen and assumed the position doctors routinely use when they are about to dispense news that they fear the patient will not like. This is when I begin to realize that the neurologist suffers from a form of Tin God Syndrome I haven't come across in many years: the Siren.

The Siren is an alarmist. They are masters of transforming mild molehill maladies into mammoth medical mountains (try saying that five times fast). If you have a MUST be a migraine, or an aneurism! the MRI! Feeling a little blue since you lost your job? Oh, no! You might be bipolar! Quick! Take some Paxil...STAT!

The Siren is relieved only when you become as intensely concerned and/or upset as she herself is. If you remain calm, or question the Siren...Siren always counters by questioning your knowledge. After all, if you knew as much as the Siren, you'd be as deeply worried as she is!

The conversation:

"All these tics, in a child so's very disturbing, very disturbing."

"She's had most of these tics for years, doctor. They are well-documented by her pediatrician and therapists."

"It's just not...normal for a child to have so many tics at this young of an age."

"Her father manifested his tics very young, too."

(Irriated) "I am especially worried about the corporalia (this is uncontrollable cursing...while Wren does have it, it is rare that she experiences these sorts of tics). If it continues, we may have to re-evaluate the need to medicate her."

(I am now also irritated) "Doctor, it has always been our position that we will medicate Wren only when her quality of life is compromised by HER standards. Now that she is on the Zoloft, she is no longer upsetted by her tics. We see no need to medicate her now."

"Yes, but this is all VERY disturbing to see in so YOUNG a child! Medication may be necessary!" (Siren is getting revved up.)

"Her father and I are not unrealistic about this, doctor. We do realize that at some point, she will have to be medicated. We'd like that to be as small of a window as possible. That's why she takes so much therapy, and part of why we homeschool her. We're just not willing to medicate her when the tics are not affecting her quality of life."

"The corporalia could affect her socially! I cannot believe that it isn't already! And the Social Avoidance Syndrome is very advanced in Wren, which is VERY DISTURBING!"

"Her father also has Social Avoidance, and is a very happy person. We do not believe it is a condition which should be treated unless she wants to treat it. As long as she is happy, we're happy."

"I think you're failing to see how advanced her TS is! Unless you aren't sure what a tic really is, and perhaps you're over-reporting normal behavior as tics?"

(I am now getting pissed). "I know the difference between normal behavior and a tic. I've known my husband most of my life. When he was a teenager, his Tourette's was extremely advanced; one of the worst cases our expert had ever seen. If I cannot recognize a tic, her father certainly can. And we do realize that her Tourette's is advanced compared to the norm; it is, however, going along the normal course for her family. She is having the same sort of tics at the same ages as her father did. If you like, we can have the expert fax you over some information, as he treated my husband at this age as well."

(The Siren is nonplussed and very unhappy that I continue to bring up the expert to refute her statements). "I'd like to see you again in October, and we can re-evaluate Wren at that time."

"Fine. We'll be seeing the expert in September, and I'll have him fax over his report so you will have it when we meet."

I have no doubt that Siren has made some sort of asinine statement in Wren's chart about my "denial" of the "seriousness" of Wren's condition. Siren's love to do that when they fail to work up the parents to their level of paranoia. Luckily, I have the expert doctor on my side, and his word goes a lot further than someone whose expertise is epilepsy.

A situation that I have decided to remedy. Dr. M was ok when she was just the competant local; now that I realize she suffers from Siren Tin God's time to move on. The fact that the Siren wouldn't tell me how many kids with TS she's treated in the past and/or is treating currently makes me uncomfortable...for all I know, Wren could be the only one. I'm now going to have to start the process of finding a new pediatric neurologist who has any experience with TS. That's not an easy task, and it's made harder by doctors who hedge about the truth: they'll tell you they have experience, but what they mean is that they studied it in med school. Not exactly what I'm looking for.

Anyone know where I could buy Tin God Repellant? Now that would be technology working for the common man....

Labels: ,


At 9:59 AM, Blogger Angel said...

(((((Angel)))))) I'm sorry about this latest TG. I had an encounter with 2 Sirens recently. @@ I hope you find a more competent doc for Wren quickly. Hang in there!!

At 2:29 PM, Blogger mr m said...

Hi Angel

Thanks for taking the time to comment on my ramblings recently. I took a wander over to your site and I reckon you got it way tougher than me.

Love, life and happiness to you and yours.

mr m

At 1:20 AM, Blogger Zen Angel said...

Angel: you've dealt with TWO Sirens lately? Yikes! I hope it's going better for you now.

Mr. M: Thanks for coming over here and commenting!


Post a Comment

<< Home