Re: meds suck.

[Guest guest]

Debra

My heart goes out to you. I am so lucky to have a child that at the moment I can manage with. Not sure what his teenage years are going to bring. I have been told that it could get worse. Interestingly, some of his behaviours doesn't even rear their heads when he is with others - saves most of them for dear ole mum. But he is getting bigger and his appetite is all over the place. I am moving closer to work so that I can spend more time with him after school than on the freeways driving home. Hopefully I can get some structure into his life.

From: Debra Balke <dlbalke@...>Subject: ( ) meds suck. Received: Wednesday, 10 March, 2010, 3:21 PM

In regards to the concern regarding giving kids multiple psych meds, I share that same concern.

We have two autistic kids. The first we tried all behavioral methods, quickly used medications to keep him in the home and out of hospitalization/ residential placement.

When the second autistic child came, we were familiar with the plusses and minuses of meds and hoped that somehow our inexperience and fears led us to medicate our first child and that if we had just been better experienced in autism, behavior, meds further that we could have avoided some of the meds at least.

Ha, ha, ha.... wishful thinking. I swore I would not put second child on meds, now that I was so well versed in autism and behaviors. Heck, what couldn't I deal with any longer. We had dealt with probably anything/everything there was.

Well, wrong. I so wish that was true. Despite tremendous experience, behavioral techniques, etc. etc. second child could not function without medication. Not just any meds either. Back to the dreaded antipsychotics again. UGHHHH! We tried anything/everything first before meds on second child. Again, failure. Even the safer meds wouldn't cut it or made it worse.

So, going back to first autistic child, he is on a cocktail of Tenex, Zoloft, Abilify, Melatonin, and Metformin. Good god, what a lot of meds. We systematically tried to carefully and slowly lower each one over the last year, now that he is homeschooled for the past few years and we can entirely control his environment. (Oh yeah, the other theory that if just everything was consistent and well structured, etc. I could lower his meds - wrong too!)

I learned exactly why he is on all of the meds, what might be withdrawal effects, and what is truly his baseline and why we started the meds.

So, without meds, both of my kids would be in a locked psych ward. Either that, or I would. Folks get to meds because of serious behaviors. Ugly behaviors. Trying to jump out of the car on the freeway, physical aggression, property destruction, self injurious behaviors, rage episodes.

We tried hard. Really hard. Really, really, really hard to avoid meds, get off meds, and with my second child I had all of the knowledge I needed and experience. Still, it didn't work.

And yes, tried supplements and diets. They didn't work. I really wish they did/would. And, I am a pediatric neurologist, so it isn't like I don't know the meds, how toxic they are, etc.

I was just agonizing over this today, wondering if my first child would EVER get off meds. Since we tried to lower them this year, slowly, one at a time, I am not anxious to try again in the next year or so. But, he has mild tardive dyskinesia, so we are up against a wall with him. Serious side effects, but very serious behaviors and issues. It truly sucks.

Sorry to ramble.

[Guest guest]

Oh I am right there with you, I think my fear of meds (not really a

fear but I don't even like taking tylenol, I prefer alternatives to

meds when possible) even slowed down my dd dx. That and chalking

things up to age, spiritedness, etc. I spent 2 years trying to chalk

things up to something else before I took her to the school district

for eval. I tried 1st to dx her myself so I could find a natural

alternative. I tried diet, sensory diet, supplements, behavior

modifications, etc. Then I didn't take her to a psychiatrist until she

had been dismissed from special ed and her tantrums were to the point

I thought shed hurt someone during them. Then she only got an adhd dx

and I tried again to avoid meds by trying to become an expert in adhd

and trying more specialized supplements again. b/c of the tantrums

though we got desperate enough for meds. However the 1st 3 were stims

and she can't take stims so I became very frustrated and worried so

gave up. Only for 3 month b/c the bigger she got the more dangarous

the tantrums. Then she was ok on straterra for 9 month. But then

rages can back with a vengence and I dx her bp b/c of a google search

on adhd tantrums (trying to again find non medication help) and took

it to her psych at an emergency appt and he agreed and put her on mood

stabilizer (depakote). Then another 6 month later the straterra we

thought stopped working so they raised it which made things worse,

taking her off though made it even worse and things got scary again so

back to the psych for an emergency after hrs squeeze in yesterdat and

now we get the joy of trying intuniv. If it weren't for intuniv we

would be at more mood stabilizers, anti depressants or anti psychotics

b/c all other adhd meds are stims.

Its like a double edged sword, meds and their effects and side effects

are scary but being without is even scarier

On 3/10/10, jennifer mackay <mastermess6@...> wrote:

> Debra

>

> My heart goes out to you.  I am so lucky to have a child that at the moment

> I can manage with.  Not sure what his teenage years are going to bring.  I

> have been told that it could get worse.  Interestingly, some of his

> behaviours doesn't even rear their heads when he is with others - saves most

> of them for dear ole mum.  But he is getting bigger and his appetite is all

> over the place.  I am moving closer to work so that I can spend more time

> with him after school than on the freeways driving home.  Hopefully I can

> get some structure into his life.

>

>

>

>

>

>

> From: Debra Balke <dlbalke@...>

> Subject: ( ) meds suck.

>

> Received: Wednesday, 10 March, 2010, 3:21 PM

>

>

>

>

>

>

>

> In regards to the concern regarding giving kids multiple psych meds, I share

> that same concern.

>

> We have two autistic kids.  The first we tried all behavioral methods,

> quickly used medications to keep him in the home and out of hospitalization/

> residential placement.

>

> When the second autistic child came, we were familiar with the plusses and

> minuses of meds and hoped that somehow our inexperience and fears led us to

> medicate our first child and that if we had just been better experienced in

> autism, behavior, meds further that we could have avoided some of the meds

> at least.

>

> Ha, ha, ha....  wishful thinking.  I swore I would not put second child on

> meds, now that I was so well versed in autism and behaviors.  Heck, what

> couldn't I deal with any longer.  We had dealt with probably

> anything/everything there was.

>

> Well, wrong.  I so wish that was true.  Despite tremendous experience,

> behavioral techniques, etc. etc. second child could not function without

> medication.  Not just any meds either.  Back to the dreaded antipsychotics

> again.  UGHHHH!  We tried anything/everything first before meds on second

> child.  Again, failure.  Even the safer meds wouldn't cut it or made it

> worse.

>

> So, going back to first autistic child, he is on a cocktail of Tenex,

> Zoloft, Abilify, Melatonin, and Metformin.  Good god, what a lot of meds.

> We systematically tried to carefully and slowly lower each one over the last

> year, now that he is homeschooled for the past few years and we can entirely

> control his environment.  (Oh yeah, the other theory that if just everything

> was consistent and well structured, etc.  I could lower his meds - wrong

> too!)

>

> I learned exactly why he is on all of the meds, what might be withdrawal

> effects, and what is truly his baseline and why we started the meds.

>

> So, without meds, both of my kids would be in a locked psych ward.  Either

> that, or I would.  Folks get to meds because of serious behaviors.  Ugly

> behaviors.  Trying to jump out of the car on the freeway, physical

> aggression, property destruction, self injurious behaviors, rage episodes.

>

> We tried hard.  Really hard.  Really, really, really hard to avoid meds, get

> off meds, and with my second child I had all of the knowledge I needed and

> experience.  Still, it didn't work.

>

> And yes, tried supplements and diets.  They didn't work.  I really wish they

> did/would.  And, I am a pediatric neurologist, so it isn't like I don't know

> the meds, how toxic they are, etc.

>

> I was just agonizing over this today, wondering if my first child would EVER

> get off meds.  Since we tried to lower them this year, slowly, one at a

> time, I am not anxious to try again in the next year or so.  But, he has

> mild tardive dyskinesia, so we are up against a wall with him.  Serious side

> effects, but very serious behaviors and issues.  It truly sucks.

>

> Sorry to ramble.

>

>

>

>

>

>

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

and

Girl Scout cookies are coming!

[Guest guest]

I enjoyed your "ramble". I agree with you. I was just like you - thinking I would not do meds with my second one who had autism. We did hold off for a long time too. But now we are there.

Roxanna

Whenever I feel blue, I start breathing again.

( ) meds suck.

In regards to the concern regarding giving kids multiple psych meds, I share that same concern.

We have two autistic kids. The first we tried all behavioral methods, quickly used medications to keep him in the home and out of hospitalization/residential placement.

When the second autistic child came, we were familiar with the plusses and minuses of meds and hoped that somehow our inexperience and fears led us to medicate our first child and that if we had just been better experienced in autism, behavior, meds further that we could have avoided some of the meds at least.

Ha, ha, ha.... wishful thinking. I swore I would not put second child on meds, now that I was so well versed in autism and behaviors. Heck, what couldn't I deal with any longer. We had dealt with probably anything/everything there was.

Well, wrong. I so wish that was true. Despite tremendous experience, behavioral techniques, etc. etc. second child could not function without medication. Not just any meds either. Back to the dreaded antipsychotics again. UGHHHH! We tried anything/everything first before meds on second child. Again, failure. Even the safer meds wouldn't cut it or made it worse.

So, going back to first autistic child, he is on a cocktail of Tenex, Zoloft, Abilify, Melatonin, and Metformin. Good god, what a lot of meds. We systematically tried to carefully and slowly lower each one over the last year, now that he is homeschooled for the past few years and we can entirely control his environment. (Oh yeah, the other theory that if just everything was consistent and well structured, etc. I could lower his meds - wrong too!)

I learned exactly why he is on all of the meds, what might be withdrawal effects, and what is truly his baseline and why we started the meds.

So, without meds, both of my kids would be in a locked psych ward. Either that, or I would. Folks get to meds because of serious behaviors. Ugly behaviors. Trying to jump out of the car on the freeway, physical aggression, property destruction, self injurious behaviors, rage episodes.

We tried hard. Really hard. Really, really, really hard to avoid meds, get off meds, and with my second child I had all of the knowledge I needed and experience. Still, it didn't work.

And yes, tried supplements and diets. They didn't work. I really wish they did/would. And, I am a pediatric neurologist, so it isn't like I don't know the meds, how toxic they are, etc.

I was just agonizing over this today, wondering if my first child would EVER get off meds. Since we tried to lower them this year, slowly, one at a time, I am not anxious to try again in the next year or so. But, he has mild tardive dyskinesia, so we are up against a wall with him. Serious side effects, but very serious behaviors and issues. It truly sucks.

Sorry to ramble.