Re: Meds and Misdiagnosis

[Guest guest]

Hi Cat,

I can understand your confusion, there often are no definitive

answers and 'experts' will disagree. In addition there is often much

overlap from one disorder to another, ie ADHD/Bipolar in particular.

I think there may well be over labelling of otherwise 'normal'

behavior/temperment etc, and that sometimes lifestyle adjustments,

nutrition, can be enough to turn things around.

For me what would determine the use of medication is the level of

impairment and lack of ability to function. Specific to OCD, if ERP

alone was not working, or as was the case for us, ERP becomes

impossible because of the severity of the OCD, it becomes clear that

medication is necessary.

I was very concerned about giving our son medication and did not want

to go that route. At the 3 month mark, after onset, it was so severe

I would have given him poison if I thought it would bring him some

relief. He could not leave the house, was doing a ritual(convincing

out loud) every 5 minutes, and could be up to 2am doing this, and

would even have ocd in his dreams, and would ask me to kill him to

make it stop. So, I guess you get my point by now, you will know

without a doubt at some point if your child's illness progresses.

Even if it is not so severe, my understanding is that by turning down

the volume on the intensity of the OCD, most kids are then more able

to accomplish the ERP. I guess it could be compared to using an

epidural for child birth, you can do it without, but some will say

why would you? I didn't feel a need, but was prepared to use if I

did. All that to say, while it does come down to personal values and

beliefs in one regard, the circumstances will help dictate what makes

sense to do.

In case you have been reading my posts, and that has concerned you,

please know that, even though we often feel like we are walking

through hell with all these medications, for us we know there is no

choice. Without medication there was no life, with medication there

is a life, with challenges yet to be figured out.

One last thought, our son is LD, not gifted, but has a wild

imagination and my sense is that the OCD uses this against him

mercilessly. There seems to be a level of intensity, sensitivity,

oppositional beh, and general quirkiness that coexist to some degree

with many OCD kids, mine included. I have read that

OCD/Bipolar/Autism/Asperger all fit on a continuum, and genetic

studies are finding DNA markers(?) that coexist with all these

disorders(fits with the overlap in diag).

I empathize with your struggle to make this decision.

Barb

>

>

> With all the posts lately talking about bad side effects to various

> meds, I have to say I'm more confused than ever whether to take this

> step with my 11 yr old son.

>

> I totally understand for many families, there just isn't a choice. I

> can see some of you have no other alternative and that it's made

life

> livable, even wonderful, for your kid(s). I feel good every time I

> read that someone has been successful with it.

>

> But for those of us on the fence, wow. I don't know how to process

all

> the varying input. I know every med works differently for different

> people, which obviously makes it all the more confusing when you're

> trying to decide to " go there. " I realize there is not a parents'

> " manual " for this, and that we can just do our best, go with our

gut,

> etc. But my gut is on a rollercoaster ride so I'm hoping you

> experienced types can offer some advice to help me calm down and

make

> a rational decision.

>

> Our situation:

>

> Ds has always been challenging, strong-willed, but also has a

> sincerely happy, charming, creative, witty side. My dh tends to

think

> I focus too much on the negative (which could be true). When things

> are going well, and ds is happy, I wonder why I worry so much. BUT

> when things are going badly---a freakout over germs, an intense

moment

> of defiance, or (most concerning) a sad moment when ds says he

wishes

> he were " dead " ---I wonder what's wrong with me that I haven't taken

it

> " seriously enough " and put ds on Zoloft as one psych advised.

>

> Part of my hesitation is that for years we've been told that much of

> our son's behavior is tied into (or even caused by) his

intelligence.

> He is said to be " profoundly gifted, " which sounds wonderful but

quite

> frankly seems more of an affliction than a gift. He really *is* " too

> smart for his own good. " The ruminations can head into the

> stratosphere around here, and unfortunately ds keeps much of it to

> himself (because he concluded long ago his parents cannot possibly

> understand or keep up).

>

> There is a community of gifted psychology experts who believe many

> children are being frequently mislabeled with

ADHD/OCD/Asperger's/high

> sensitivity/bipolar etc. when in reality they might be highly gifted

> kids acting like highly gifted kids often will--intense,

> hypersensitive, finicky, strong-willed, perfectionistic, anxious,

> quirky, UNmotivated, etc. They believe there is a certain amount of

> overlap between giftedness and (perceived) pathology, and

misdiagnosis

> is far too common (for more info, see " Misdiagnosis and Dual

Diagnoses

> of Gifted Children and Adults by Dr. Webb, etc. or check out

the

> website of Dr. Ed Amend www.amendpsych.com).

>

> These same people are in no way denying that

ADHD/OCD/Asperger's/etc.

> exist, they just feel those diagnoses are often pronounced too

rapidly

> and unnecessarily, particularly in high IQ kids. One pediatric

> neuropsychologist we spoke with was particularly irked by the surge

of

> Asperger's diagnoses. He said, like ADHD a decade ago, the

Asperger's

> label is being tacked onto practically any kid who won't make eye

> contact. He said he has seen 1,000 kids in his years of practice and

> only dx'd two with Asperger's, while the local school district seems

> to pinpoint 10% of its student population as Aspies. (He told us

this

> after a local psych told us our son " met 78% of the the checklist of

> behaviors for Asperger's, " therefore our son " probably had

Asperger's " ).

>

> This is one of the reasons that we've seen so many professionals--

and

> become soooo frustrated when everyone has a different opinion. Does

> anyone really *know* what they're doing? When there is such a

mishmash

> of opinions, how do you know whom to trust (especially when you're

> talking about introducing brain-altering chemicals?).

>

> Please know I am not *in any way* posting these thoughts to

challenge

> anyone's dx here--not at all. I'm just expressing why it's so

> frustrating for me to know which way to go. Who do you believe? How

> many opinions should you seek? Which side do you take?

>

> I want to help my kid. I want to do what's right. But I just have a

> hard time knowing what to do and when to do it, and that frustrates

me

> no end. Reading about all the rollercoaster rides so many of you

have

> been through here just makes me all the more hesitant to commit. So,

> in limbo I wait, hoping I'll know what to do soon enough.

>

> My apologies for the rant!

>

> Cat the Confused

>