Re: PBS - Medicating children

[Guest guest]

nna,

I saw this last night. It was frightening and enlightening. I wouldn't recommend it for anyone planning to try focalin or prozac but the total ingnorance and guesswork involved in psychiatrists handing out untested meds for children was appalling.

I couldn't help but notice also that the kids they were featuring who were on tons of meds were shown eating the crappiest foods! And that didn't seem to matter one iota to anyone reporting...one kid on the corn dogs and the other on ice cream bars. Couldn't they maybe have eliminated a couple of the meds if the kids were on a decent diet???

I definitely recommend watching it at the URL nna posted....if you dare. I'm already planning to get jamie off the clonidine she needs (?) to sleep at night.

Glad someone else saw this too.

Sherry

[Guest guest]

<<On the PBS show, do you see how lucky we are (I mean, DS). We have a mouse model. We have a good understanding of what is happening. THey have no idea. They just throw one drug on top of the other. >>

True! I also wondered if Jane's dtr was dual dx DS and Aut. I thought one of the most important issues on the show was that it was mostly geared toward children with a bipolar dx...and even they had to admit that diagnosing a child with bipolar is a mushy process at best. With straight autism we have a bit more information and history and with DS...a long (comparatively) and documented history of research. Would that that were true in the dual dx community where...in MY opinion...we are also throwing meds and treatments at a condition with not much research or study behind it. It's still pretty much a guessing game except for Dr. Capone at Kennedy Kreiger, and a couple of others.

Sherry

[Guest guest]

We have two great Dr.s here in Indy that we receive information through for meds...its all the spectrum of Autism, there is not a drug for Autism...we treat for anxiety and ADHD which is part of the Autism spectrum....

Re: PBS - Medicating children

<<On the PBS show, do you see how lucky we are (I mean, DS). We have a mouse model. We have a good understanding of what is happening. THey have no idea. They just throw one drug on top of the other. >>

True! I also wondered if Jane's dtr was dual dx DS and Aut. I thought one of the most important issues on the show was that it was mostly geared toward children with a bipolar dx...and even they had to admit that diagnosing a child with bipolar is a mushy process at best. With straight autism we have a bit more information and history and with DS...a long (comparatively) and documented history of research. Would that that were true in the dual dx community where...in MY opinion...we are also throwing meds and treatments at a condition with not much research or study behind it. It's still pretty much a guessing game except for Dr. Capone at Kennedy Kreiger, and a couple of others.

Sherry

[Guest guest]

<<The only thing I can say about the meds other than one at a time...is start our with very LOW dosages and work your way up...even if you have to divide and make them into liquid if the drug is able to do this.....my daughter is very sensitive to meds.....so we go slow...but in two years we are so much better....took us a while to get there and did not>>

Jane...we actually have started with miniscule amounts and gone extremely slow with everything we have tried with . She's 19 now and the major thing we have learned specific to her behaviors and insanity is that she has severe GI problems...Crohn's disease, IBD from throat to anus with hidden bleeding. Our meds now devoted to treating that...once we finally, after years of pushing, got the dx have helped her tremendously and - funny...she does not react badly to most of them. It just took forever to uncover the problem. Not that she doesn't still have behavioral issues; she does indeed and we're working full steam ahead on a compliance ABA (VB) program with her now. I'm kind of glad the behavioral type meds did not work for her as we would only have been masking the real problem. She's a pretty rare case and is ALWAYS the one who breaks all the rules.

I'm so happy your daughter is doing so well. Did you notice there was a show on right after the medication PBS special on HFA? I taped it but have not watched it yet. We're much more in the LFA department LOL.Sherry

[Guest guest]

I have a neighbor whose daughter is EXACTLY like the kids on that show...I emailed it to her and I know she's going to be all over it.

Her daughter is being drugged, but seriously off the drugs she's a incredible mess...she was on one drug that caused her arms to turn purple (blood issue with platelets) and they were afraid to take her to the ER because she looked like she had been beaten.

She does the head twist thing like that one boy too.

This same kid undressed when she was 4 years old...then did it several other times over the years. We have done our best to always supervise their play, but once my husband went into the house for 2 minutes to go to the bathroom, left them on the driveway (she was 6 he was 8) and when he opened the front door to come back out he heard her saying 'pull them up, pull them up' he came around the corner, and she had 's shorts around his ankles...Rick took her home told her mother what happened and when he got back to our house said, "Dad, she licked the penis."

OMG!!!!!

She has undressed, and fondeled every boy on this cul de sac that was too young or too developmentally delayed to say no...and we REALLY have to keep them apart now because would LOVE it if this happened now!

My poor neighbor is actually considering a placement for her daughter...it's gotten that bad (she's 11 now) the neighbors won't let their kids play with her, so Mom never gets a break...the school district has always mis-diagnossed her and she's always sent home for violent rages (and she was included, but now in a SDC class for high funcitoning Autism, but still not improving)

IT's sad, and definately makes me feel like I've got nothing to deal with in comparison.

, Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

Re: PBS - Medicating children

<<On the PBS show, do you see how lucky we are (I mean, DS). We have a mouse model. We have a good understanding of what is happening. THey have no idea. They just throw one drug on top of the other. >>

True! I also wondered if Jane's dtr was dual dx DS and Aut. I thought one of the most important issues on the show was that it was mostly geared toward children with a bipolar dx...and even they had to admit that diagnosing a child with bipolar is a mushy process at best. With straight autism we have a bit more information and history and with DS...a long (comparatively) and documented history of research. Would that that were true in the dual dx community where...in MY opinion...we are also throwing meds and treatments at a condition with not much research or study behind it. It's still pretty much a guessing game except for Dr. Capone at Kennedy Kreiger, and a couple of others.

Sherry