Friday, August 27, 2010

Visual Distortion & Distorted Therapist!

When we visited our therapist last week, our son shared a recent symptom he’s been experiencing. He’s been having strange visual perspective changes. Like he’ll feel the room moving very far away or he’ll shrink and feel very small. It’s happened on and off while doing ordinary things, like taking a shower or playing with legos.

After my son left the room, I asked our therapist if he’s heard of this before and what causes it. Our therapist said, “Yes, I’ve heard of this, it sometimes happens to women while they’re being raped. It’s the brain’s way of defending itself, a form of detachment.”

WTH?????

Ok, so I ask him why this is happening to my son since he’s not under any kind of stress or trauma when this happens, he’s just playing with legos!

Our therapist responds with, “I don’t know why this is happening, but let’s not pay it any attention.”

GGGGGGRRRRRRR!!!!!!!!!! ( That’s me screaming inside my head)

I’m so mad about this, in fact, I didn’t even want to blog about this until today since it made me so mad. I can even feel my Mama Bear blood boiling as I type about it now.

As far as I know, if a therapist doesn’t know the answer to a question, they can research the question with all those books behind them. I understand there may not be an answer, but just telling me to “not pay it any attention” doesn’t cut it!

It makes me feel like he’s done dealing with my son. My last call to him yesterday wasn’t anymore encouraging. As we discussed my son’s destructive behavior, our therapist said that he can choose to let out his anger in another way, he can just do push ups.

Yeah, try telling that to my son when he’s in a rage... “hey son, give me 30, now hit the floor!”

Yeah... right, sounds like a winner idea.

When I told my son about this, he just laughed and said, “if I had to do push ups I would just get more angry”.

So, like so many other moms fighting for their children, I researched this symptom on my own. Thanks to one mom on a forum, I was given the suggestion to look into “Alice in Wonderland Syndrome”. This is neurological condition which affects human perception. Sufferers may experience confusion of the size and shape of their body or see objects with the wrong size and/or find that perspective is incorrect. Hmmm... sounds familiar!

This is a temporary condition that is often associated with migraines, brain tumors and the use of psychoactive drugs. It’s also present at the beginning of Epstein-Barr Virus (mononucleosis). With my son just recently having a bad virus, mono may be the explanation. But since he’s mentioned feeling something similar in the past, it may also be the medications. The final question I have is the tumor.

Ok, you’re probably saying to yourself... this is just the reason why parents shouldn’t research things on their own.

But let me first say, I do not believe my son has a tumor. However, it brings up a question that’s never been answered. After 3 years of treatment through our HMO, a handful of different medications and still no official diagnosis, our doctors have never looked at my son’s brain. We’ve never had any scans to check and see that he doesn’t have any physical problems.

Could there be something going on inside his brain that would require different treatment. In my own life, I’ve seen this same scenario. My cousin was diagnosed with diabetes. But after my cousin researched on her own and pushed her doctors to run certain tests, she was later diagnosed with a tumor on her pituitary gland. After surgery and treatment, she’s now a cancer survivor and living a healthy life. I always think, what if she’d never pushed her doctors to run more tests?

So, though I don’t expect my son to have cancer, I do feel it’s my responsibility to make sure that we’re thorough in my son’s treatment. Which for me, requires looking inside his brain, not just telling him to take drugs and do push ups.

So today I begin this fight. I’m meeting with our pediatrician and requesting a referral to a neurologist.

Watch out, Mama Bear is coming!

8 comments:

  1. You go Mama Bear. Show those Doctors who's boss. (right after I kick them!)

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  2. I love the "just do push-ups" idea. ;)

    Cleary, your son's therapist, like my son't therapist, just doesn't really get the extent of the issue with which we are dealing with.

    Getting neuro involved isn't a bad idea at all!

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  3. Just got back from the appointment with our pediatrician. He's requesting a consult from the neurology appointment by phone, hopefully we'll get the approval to get a brain scan, just to rule things out.

    In the meantime, our pediatrician said that he believes we might be looking at a case of childhood schizophrenia. Though I believe he's wrong (he himself admitted this isn't his area of expertise), I appreciate his acknowledgement that this is a serious matter, not something I should ignore.

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  4. Have you considered finding another therapist that your HMO will cover? Or asking your pediatrician for a referal to another Therapist? My son's 1st 2 therapist didn't work out, they just weren't a good fit for him. We have been with his 3rd one now for 3 years and the improvements are amazing.
    Jerry

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  5. I'm so down on therapists after going through three of them that were all kind of idiots. One guy insisted that my son "really likes negative attention", that he was doing this on purpose because he THRIVES on getting yelled at. WHAT???

    We've gotten a ton of advice (much of it unsolicited...) about what to do when you get angry, but NOBODY understands what a RAGE is like. My kid is not just mad, he's in a whole different place. He's "over the edge". He's like something out of a horror movie. You can't even suggest the pushups at that point, as he's flinging heavy things at your head and screaming a the top of his lungs. There is no reasoning with a kid in a rage.

    Over the years, I've discovered that I really need to be my own doctor to some extent. Thank God I'm an educated mom... I don't have any idea how other's do this without the ability to do a lot of research. I had to BEG my pediatrician for TWO YEARS before she'd let me get a sleep test done and, lo and behold, my son had severe sleep apnea. STOP QUESTIONING THE MOTHER! Mom's know best!

    You go, Mama Bear! INSIST on those tests. Rule out EVERYTHING that could possibly cause behavioral issues. Good luck getting your brain scan!

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  6. Nobody is a better advocate for their child than you. The doctor is working for you after all. You pay their 'wage', not the other way around. I always talk to them as an employee not as some passive, uninformed git that is just happy to sit at their feet to lap up their supposed god like wisdom.
    I always go with a list of questions and with my own possible understanding which I discuss. My husband was a mechanic and if someone can't fix your car properly to your satisfaction then you go to someone who can. People seem afraid to do that when it comes to doctors.
    You do your research and you get your MRI or CAT scan!!

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  7. Oh my Lord. Seriously, get a new therapist. This guy is an idiot and is doing harm at this point. And far as schizophrenia goes, from everything you described I woudl say I doubt it but you can get testing done from a Neuropsychologist (PhD) that could tell you if that is what your son has. Visual disturbances including perception issues are common with psychotropic drugs. You need to get a good med assessment as well. Trileptal isn't strong enough for many kids with BP - especially as they go through puberty. My pdoc says he rarely sees it being effective.

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  8. I hear ya on getting a new therapist! I just don't know how to find the right person. I've already changed 2 of our doctors/therapists in this department. We even went to the top of this organization, requesting permission to seek more specialize doctors outside of our HMO, but were denied.

    Believe it or not, the doctors we currently have are better then where we started, I wonder if it gets any better within our HMO? One doctor even told us to pay for therapy on the outside since it wasn't good here ( he was referring to his own staff!). But we can't afford that, so we're trying our best with what we have. I'm still looking into any referrals, I'm hoping maybe neurology dept. may be able to give us a good recommendation.

    When I asked our pediatrician, he said, oh well they're all good. So I didn't get any help there.

    Thank you everyone for your feedback, it helps me feel confident against a system that thinks I'm a fussy mom.

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