Re: re: Dr. Delongs Study & SSRI Usage

[Guest guest]

,

It is my understanding that the SSRI's help the bloodflow in the temporal

lobes and also help with the dysregulated sleep cycles. The problem is that

there are so many things that are off in our kids that there is no magic

formula. My children have the same mom and dad, yet respond differently to

the SSRI's. One is on Paxil and one is on Zoloft. I have one child who had

symptoms on the high end of the autism spectrum and one with CFS-symptoms

The degree of their sensitivities is also completely different. My younger

son was also extremely hyperative until he had desentization allergy shots

and I stopped exposing him to things he was sensitive to(chemicals), like

the laundry products that were a constant exposure on his clothes, bedding,

etc.

There has also been a difference in tolerance and benefit from SSRI's in

relation to prior to having infections addressed and after. He also has

very obvious regression when his diet is not followed. I remember one time

when he cheated at a friends house and ate cheese doritos. When he called

me I knew that something had happened before he even confessed. The changes

in his speech and personality were obvious without even seeing him. I could

just tell from the phone conversation.

Like your son, my son is on the edge-one foot in and one foot out. An

extremely frustrating place to be, especially with a ten year old. He is in

a much better place than he has ever been. He has emotions that he was

never capable of before, but is having an extremely hard time dealing with

them.

He grew up with parts of his brain never working right. Even if he was

cured today, he has things that did not develop like they should. These

skills are not going to magically appear without alot of help. He needs to

be taught how to express his emotions properly, how to problem solve and how

to think in different ways.

This is my ongoing battle with my sons school. They do not understand what

rehabiliatation is needed with my son. I am not going to give up because I

have seen what my son is capable of with the right medications, the right

type of support.

In our case there is no history of depression that I am aware of. We do

have a history of immune/ autoimmune problems.

Cheryl

> I think I ought to clear up a few things. We do use

> Goldberg. We also use low low low dosages- yet I have

> not found SSRI usage overwhelmingly positive yet and

> we have tried four different types. Thus, I actually ASKED

> doctor Goldberg why he uses it as a part of his protocal. This

> led me to the Delong study and after having read the study,

> I am not overly impressed with it. This is why I have posted

> about the Delong study here.

>

> There were indeed a sizable number of children who did not

> respond well to the SSRI. Some showed increase in language

> but the amount of hyperactivity, lethargicbehavior, stimming

> etc proved to outweigh any benefits. As I recall, the study

> broke down several different aspects like severity of autism

> (asperger children, Hyperlexic children, and PDD children

> were not well represented) and familial history of other disorders

> like depression. This is why I asked if the " responders " on the

> list also had the same family history. I have read in other places

> that a family *tends* to do well on the same class of drugs. I am

> trying to figure out why it didn't swing in our favour.

>

> I will be honest with something and I really hope no one gets

> offended. I do get disturbed when parents stop asking " why "

> and just swallow treatments whole on the basis that it is a part

> of the " protocal " or that the person prescribing it is one of the

> few people in the country dealing with it. I am also rather

> distrurbed

> by the number of people that don't know how a drug works, what

> the side effects are, or why their doctor (Goldberg, DAN!, or

> otherwise) are using it.

>

> Also, children can't

> live in a vaccuum and it takes a great deal of time and energy

> determining which treatment helps and which doesn't- especially

> when you tackle this from a variety of areas like medically and

> educationally. For instance, when we took my son off of zoloft,

> he did well for the first 6 days. THen he got willy nilly for two

> days. One might first shout " regression! Get the zoloft " but

> after some careful looking around, I discovered that a few

> things: 1.) the preschool fed him cheese crackers.. Great..

> a gluten and a casein food.... and 2.) our ABA program was

> stalled in programs not because of our son but because our

> consultant hadn't given us new programs. This caused our son

> to be VERY bored and our tutors to be VERY bored and they

> were not very reinforcing . Forcing a child to answer the same

> old question over and over again without reinforcement is

> setting yourself up for trouble. Two things occured that week that

> can account for some defiant behavior in my child. while the

> ABA problem was something I should have seen coming, I

> could not forsee the preschool doing something I exlicitly told

> them not to.

>

> I just see a lot of parents starting new therapies at the same

> time or not keeping therapies constant while trying a new one. THe

> result is that the waters get muddy and I don't feel satisfied over

> their answers of whether or not something helped.

>

> The Delong study itself bothered me on several fronts. the first

> was the length of treatment. The mean was around 21 months.

> That is a long time to say clearly that SSRI usage was the " key " .

> Granted, a few of the case studies mentioned claimed regression

> after being taken off the SSRI but... I want to know more about

> the 15 who didn't fair well. 15 were poor and 22 were " good " .

> That isn't exactly overwhelming to me. Yes, I do know that

> Goldberg is lowering the dosages in hopes of curbing the number of

> the 15 that didn't respond well due to hyperactivity etc...

>

> So, I want to know WHY and HOW the responders responded and

> WHY and HOW the nonresponders responded- even using low

> dosages. My child is doing great and is well on the way to recovery

> BUT he still can not tell me very intricate detailed descriptions of

> how he feels because first and foremost he is a child and he does

> still have some trouble verbalising internal thoughts and feelings

> beyond " happy, sad, tired, sick, hurt, etc. " Add that to his

> pragmatic

> and language delay.... I can't exactly rely onhim to verbalise his

> feelings.

> [ I also clearly admit that I have a hard time with the brighter eyed

> child measurement. I can see if my sons eyes are dilated and I can

> tell when he is looking pretty out of it but for the most part, he

> isn't always in that state. Perhaps this is the trouble that parents

> have

> with children who are on the very edge of autism.. My son literally

> has one foot in recovery and one foot in autism.]

>

> Enough babbling I guess. I just wondered if anyone actually

> questioned SSRI usage, asked why, didn't have a child who

> responded, had a child who so clearly responded which could

> correspond to a family history of responding to a drug, etc..

>

> For the person who asked about the Delong Study:

> Effects of Fluoxetine Treatment in young children with

> idiopathic autism by G. Delong

> Developmental Medicine & Child Neurology

> 1998 v. 40 pages 551-562

>

> Many thanks

>

[Guest guest]

On 5 Jun 00 and Christos wrote:

> So, I want to know WHY and HOW the responders responded and

> WHY and HOW the nonresponders responded- even using low

> dosages. My child is doing great and is well on the way to

This, my friend, is the $64,000 question. This is why research is so

necessary. One of the upcoming projects involves setting up

blood drawing stations around the country, the purpose of which is

to build up a large database of blood samples. The samples can

be analyzed for abnormalities, similarities, and differences, in the

hopes that the children can be " sub-grouped " and not all treated as

if one-size-fits-all, because, as well already know, it doesn't.

Sandy

[Guest guest]

On a side note, I notice the reference to your ABA program stalling, and your

son being asked to answer the same old questions over and over. I know this

wasn't intended-you explained that. But ANY program that has your son

answering the same questions over and over, what's the purpose of that? If

you don't have new " programs " , why not try some Greenspan floor-time, the

Koegel approach to address the lack of speech, etc. Trying to create any

spontaneous reaction would certainly be better than that.

This is not a criticism. We have been there-done the ABA, then switched to

half ABA and half other. Then dropped ABA totally for the reason you gave. I

have been in this for a number of years and continue to see people question

all the medical pieces as you are doing, which is good, but once they are

locked into ABA they quit looking at other therapies. I would suggest looking

at a few other therapy options at this point because it sounds like you may

have achieved the maximum benefit from ABA.

Good luck!

[Guest guest]

- do you have any info on the Koegel method? I've heard it referred

to, but I don't have the time to do an intensive research on it. Can you

describe it? We also seem to be burned out on ABA.

Thanks,

[Guest guest]

Sorry for the delayed response on this. I know many people are looking for

therapy different from ABA, and the Koegels, as well as Greenspan's floor

time are the ones we tried with excellent results.

The keogel's believe kids learning to talk is very critical. They teach

children to initiate communication, and believe if they learn to to do this

they will then learn to gain knowledge on their own instead of it being " fed "

to them as in drills that all the ABAer's (which we were) are so used to.

Talking is the vehicle which allows them to do this. Their method of teaching

is to identify whatever motivates your child, feeling they will work harder

to obtain that, and use that to teach them to talk. They concentrate on using

real-life situations. They want the child to develop skills of initiation and

spontonaeity, and they provide ways to accomplish this. One of their big

things is teaching children to ask questions. As an example, learning to say

" What's that? " (or " wha dat " ), and understanding why, and what they can learn

from asking that, can provide them a tool for, learning on their own. There

is much more to it than this, but we had great success with it once our child

learned this. You can contact Lynn Koegel at " lynnk@... " , and

she can provide books they have written. etc.

The other approach we had success with is Greenspan's floor time. He has

written a few books which explain the approach, but basically he wants the

child to learn to interact with others in any way they can. He isn't

interested in teaching them " things " . He teaches you to take anything that

motivates your child, and use it to teach them to respond and initiate

communication. There are some similarities to the 2 approaches.

It is not as easy to plan a therapy program for either because there is no

series of steps to turn over to a therapist to accomplish, and it is more

difficult to track " success " . Therefore, ABAer's can't see the daily

progress, and, as a result, may feel they are wasting their time. The fact is

you are teaching your child skills on which they can then grow exponentially,

versus a series of facts they learn on which they have difficulty

generalizing. Plus, kids love the approaches because you only work with

things your child is interested in and motivated by.

I can speak from experience. When we switched to 1/2 ABA, and 1/2 these

approaches, things improved dramatically. We then dropped all ABA, and

focused on this, and it was the best thing we ever did. Our son is now in

great shape thanks to this, and Dr. Goldberg's help over the last 4 years.

I would encourage everyone to experiment with other appoaches and see for

yourself. It's worth giving up some of your time devoted to ABA, and to try

something that may work much, much better.

The Keogel's is a little more difficult to establish a therapy program

around.

[Guest guest]

In re: to the post in which treatment methods other than ABA were discussed:

I would be the last person to suggest that ABA will work in every situation.

I've heard horror stories re: Lovaas/discrete trial/ABA ranging from the use

of harsh adversives to facilitators who aren't able to modulate the basics of

the behavior-modification concept to fit the needs of individual children.

As with so many other things, I think, in large measure it depends on who's

doing the therapy. Our experience with the Center for Autism and Related

Disorders (CARD), based in L.A., has been wonderful. When our heads were

spinning with all that comes with a recent diagnosis of autism, the folks at

CARD were beacons of clarifying light who helped us implement a program very

similar to that described in Maurice's Let Me Hear Your Voice. CARD's

approach to ABA (and the blessing of excellent young ladies--college grads in

psychology--to serve as our trainers and implementors) got us on the right

path to recovery, a path we were already on when we began working with Dr.

Goldberg, who has accelerated the process even more.

Greenspan, et al., are great programs; to be sure, they have provided help,

hope and recovery for many kids. Whatever seems to be working for our kids

is the way to go, of course. ABA, as administrated by CARD, has been that

for us. Anyone wishing more information on CARD is more than welcome to

write to me privately.

Warren

[Guest guest]

PLEASE REMOVE ME FROM YOUR EMAIL LIST, i AM GETTING TOO MANY EMAILS TO KEEP

UP.

lISA

THE GIFT OF HAPPINESS BELONGS TO THOSE

WHO UNWRAP IT

Re: re: Dr. Delongs Study & SSRI Usage

>In re: to the post in which treatment methods other than ABA were

discussed:

>

>I would be the last person to suggest that ABA will work in every

situation.

>I've heard horror stories re: Lovaas/discrete trial/ABA ranging from the

use

>of harsh adversives to facilitators who aren't able to modulate the basics

of

>the behavior-modification concept to fit the needs of individual children.

>

>As with so many other things, I think, in large measure it depends on who's

>doing the therapy. Our experience with the Center for Autism and Related

>Disorders (CARD), based in L.A., has been wonderful. When our heads were

>spinning with all that comes with a recent diagnosis of autism, the folks

at

>CARD were beacons of clarifying light who helped us implement a program

very

>similar to that described in Maurice's Let Me Hear Your Voice. CARD's

>approach to ABA (and the blessing of excellent young ladies--college grads

in

>psychology--to serve as our trainers and implementors) got us on the right

>path to recovery, a path we were already on when we began working with Dr.

>Goldberg, who has accelerated the process even more.

>

>Greenspan, et al., are great programs; to be sure, they have provided help,

>hope and recovery for many kids. Whatever seems to be working for our kids

>is the way to go, of course. ABA, as administrated by CARD, has been that

>for us. Anyone wishing more information on CARD is more than welcome to

>write to me privately.

>

>Warren

>

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