SSRI's

[Guest guest]

At what level would the child's seretonin (sp) level have to reach to

require an SSRI?

[Guest guest]

Hey, Cheryl.

Elijah went for his first appointment with Dr. G, and we were told that he may

not have to go on SSRIs. We may be able to achieve the results we need with the

antiviral and antifungal. Elijah doesn't have an autism label and has more ADHD

and emotional imbalance conditions. That may be the reason why. His NK cells and

IgM are very low and HHV-6 is high.

All the best,

Robyn

>

> > At what level would the child's seretonin (sp)

> level have to reach to

> > require an SSRI?

> >

> >

> > ------------------------------------

> >

> > Responsibility for the content of this message lies

> strictly with

> > the original author(s), and is not necessarily

> endorsed by or the

> > opinion of the Research Institute, the

> Parent Coalition,

> > or the list moderator(s).

> >

[Guest guest]

That's great news and I hope he doesn't have to. Good luck!

Cheryl

~Visit my webstore for anything you need related to autism -

groceries, supps, therapy supplies, books, and more!

http://astore.amazon.com/grystai-20

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Oct 6, 2008, at 10:28 AM, Robyn & Greg Coggins wrote:

> Hey, Cheryl.

>

> Elijah went for his first appointment with Dr. G, and we were told

> that he may not have to go on SSRIs. We may be able to achieve the

> results we need with the antiviral and antifungal. Elijah doesn't

> have an autism label and has more ADHD and emotional imbalance

> conditions. That may be the reason why. His NK cells and IgM are

> very low and HHV-6 is high.

>

> All the best,

>

> Robyn

>

>

>

>>

>>> At what level would the child's seretonin (sp)

>> level have to reach to

>>> require an SSRI?

>>>

>>>

>>> ------------------------------------

>>>

>>> Responsibility for the content of this message lies

>> strictly with

>>> the original author(s), and is not necessarily

>> endorsed by or the

>>> opinion of the Research Institute, the

>> Parent Coalition,

>>> or the list moderator(s).

>>>

[Guest guest]

Me, too. I was happy to hear that. Dr. G said we'll take it one step at a time.

Take care,

Robyn

> >>

> >>> At what level would the child's seretonin

> (sp)

> >> level have to reach to

> >>> require an SSRI?

> >>>

> >>>

> >>> ------------------------------------

> >>>

> >>> Responsibility for the content of this message

> lies

> >> strictly with

> >>> the original author(s), and is not necessarily

> >> endorsed by or the

> >>> opinion of the Research Institute, the

>

> >> Parent Coalition,

> >>> or the list moderator(s).

> >>>

[Guest guest]

Not all children are on SSRI's on mine isn't

>

> > At what level would the child's seretonin (sp) level have to

reach to

> > require an SSRI?

> >

> >

> > ------------------------------------

> >

> > Responsibility for the content of this message lies strictly with

> > the original author(s), and is not necessarily endorsed by or the

> > opinion of the Research Institute, the Parent

Coalition,

> > or the list moderator(s).

> >

[Guest guest]

Hi Sheryl,

The SSRI was the hardest part of the protocol for me and we avoided it, in

part because of my hesitation, in part because in Canada I had a hard time

getting our local doc to rewrite Dr. G's script. We were probably 7 years

with Dr. G when we finally started Paxil and I was prepared for the worst.

I am so pleased to say that we started VERY slowly, at 1/8 of a tablet and

gradually increased and we saw no negative, only more awareness, more

engagement, more initiation from him - quite rapidly. With all my

hesitation I wish I had advocated more assertively with our local doc to get

it started. Dr. G was right. We needed to do a trial and if he was better

on it great, if not perhaps try one or two others and if no improvement,

then we would discontinue. We were only looking to push my son a bit more

forward and it worked tremendously!

Hope this helps.

Lori

_____

From: [mailto: ] On Behalf Of Sheryl

Sent: December-07-10 1:28 AM

Subject: ssri's

Dear Listmates,

I need to hear from you regarding ssri's. Does every one have a hard time

after starting them? Have your kids worked through a tough time on one or

did you switch and things got better?

If they do have an awful reaction, once you quit it, does the child become

his self again quickly?

I confess, this just freaks me out. My son was on Keppra for siezures and

even though he was only 4 years old, he said he was " sad " . I called the

doctor and got him off of that so quickly.

So I am just afraid of the suicidal thoughts Bill described and the violence

that another has recently described. This is a real hurdle for me in

starting this protocol. All comments and experiences will be most welcome

and appreciated.

Thank you! Sheryl

[Guest guest]

From my understanding in talking to various doctors and people who have

used SSRIs, it varies greatly with the individual. My son and husband have

either had very quick positive results from various SSRIs or very quick

negative side effects. The longest either of them ever stuck with one that

didn't fit was a month and the symptoms did not improve until it was removed,

even with dosage changes. It then took a few weeks for things to level

off.

On one, my son did extraordinarily well for the first month and then some

dark thoughts started creeping in. These were more his fears about various

friends dying or bad things happening to people, rather than the suicidal

thoughts they warn to watch for. Since he a few of his friends died when

younger, fearing friends dying wasn't a new thing, it just became much

stronger and more obsessive. I think other negative side effects many

experience are also possibly a worsening of something that is already there

rather

than brand new problem.

SSRIs can be tremendously helpful but you do need to watch carefully and

alert the doc right away if there are any negatives, even a few months in.

Gaylen

In a message dated 12/7/2010 12:28:07 A.M. Central Standard Time,

ssaturnino@... writes:

I need to hear from you regarding ssri's. Does every one have a hard time

after starting them? Have your kids worked through a tough time on one or

did you switch and things got better?

[Guest guest]

Thank you so much for your input, Robyn.  It's nice to know that some children

have no negative effects.  What improvements in your children do you attribute

to the ssri's?

And, another question:  if one ssri seems to be working, why does Dr G  switch

ssri's? 

Thanks,

Sheryl  

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Tue, December 7, 2010 9:07:01 AM

Subject: Re: ssri's

 

Hi, Sheryl.

In my experience, the child quickly does return to their old selves after

stopping an SSRI that doesn't agree with him. I stuck out the adjustment period

(10 to 14 days) if the behavior was something such as increased self stim. If

the new behavior included aggression or sadness, I would ask Dr. G if we could

switch to something else.

I have three boys all of whom are on SSRIs. None have ever experienced sadness

or depression on them. Every child is different and you have the best instincts

when it comes to your child. Trust them! SSRIs have been very positive for all

of my boys, but you do have to observe them closely just as you would if they

were on any medication.

All the best,

Robyn

From: Sheryl <ssaturnino@...>

Subject: ssri's

Date: Monday, December 6, 2010, 10:28 PM

 

Dear Listmates,

I need to hear from you regarding ssri's. Does every one have a hard time after

starting them? Have your kids worked through a tough time on one or did you

switch and things got better?

If they do have an awful reaction, once you quit it, does the child become his

self again quickly?

I confess, this just freaks me out. My son was on Keppra for siezures and even

though he was only 4 years old, he said he was " sad " . I called the doctor and

got him off of that so quickly.

So I am just afraid of the suicidal thoughts Bill described and the violence

that another has recently described. This is a real hurdle for me in starting

this protocol. All comments and experiences will be most welcome and

appreciated.

Thank you! Sheryl

[Guest guest]

Thank you, Colleen!  I am trying to gather info and courage.  So thank you.

Sheryl

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, December 7, 2010 6:20:34 AM

Subject: Re: Re: ssri's

 

Colleen,

What dosage for what weight, of Celexa are you on?

Bill

________________________________

From: Colleen Waguespack <colleendesigns@...>

Sent: Tue, December 7, 2010 9:01:48 AM

Subject: Re: ssri's

We started on Paxil a year ago and had no negative side effects- only gains in

comprehension and speech. My son is 5 years old. We have just passed the year

mark of seeing Dr. Goldberg and have just changed to Celexa. Again, there were

no negative side effects, but more gains in creative spontaneous speech and

comprehension. We have no complaints about SSRI's.

Colleen

Holden & Dupuy Interiors

colleendesigns@...

6648 Millstone Avenue Baton Rouge, LA 70808

Tel: 225.448.2815 Cell: 225..253.1428

[Guest guest]

I have read so many of these emails regarding the use of SSRI's and they all

seem so supportive of their use to the point that they seem to be represented

as a miracle drug. I really appreciate all the information that I have learned

regarding the SSRI's and I am eager to try to get my MD to look at the

protocol and to try the SSRI's with my daughter. No one has shared much about

the cognitive staus of their kids. My daughter is on the " spectrum " labeled as

mild MR but she spits out words like metallic and tells me its meaning and then

goes back in to her world of nonsense garble. Has any of your children had a

similar label and improved dramatically? I will not let myself believe that a

miracle can happen such as she can fully recover because I would have to accept

that I let her down if it does not happen. I do know I will continue to try

anything that can help her if it is in reason and safe. I want her to be the

most she can be for her.

I love her as she is now but I worry about her future. Please share any info

you are willing to.

 

 

Thanks,

Petra 

Hi Sheryl,

I personally always had bad reactions to SSRIs, but I recommitted over and over

to trying them again, until I landed w/an SNRI that did well until I developed a

stomach problem (maybe not related - I developed an allergy to half of

everything I was taking and eating at that time).

The first time, the SSRI was a bit rough, but leveled out quickly. Once one was

pretty bad and got stopped immediately.

Sometimes it seems like the med is giving a horrible reaction, you're terrified,

the child is freaking out, and the crazy doctor tells you to up the dose. For

some reason, you actually do it like he suggests (because you know he's got to

be kidding), and they come out on the other side doing soooo much better that

you decide it was worth every moment of fear and stress.

We had a few rough tries, I had a few times of stress where I couldn't figure

out what was good, bad, med, food, up, down, sideways... but SSRIs are almost

always a benefit - very few can't get settled on them. They're neuroprotective,

immune modulating, and show that they increase blood flow to the parts of the

brain lacking. They improve eye contact, connectedness... the reason I keep on

trying them is because I've studied what they can do and I've seen it in my

kids.

It was by far the most frightening part of the protocol. We were off them a

couple of years, and my youngest went on Effexor when ssri wasn't doing enough.

He had been so whiney and soooo OCD for so long that when we started this one

(an SNRI, and did it because I had done so well on it for a year). I've

forgotten what that child was like, what level of obsession and despair when he

couldn't get what he was obsessing about. They only time I see it and remember

it now is when he gets sick and can't take his med for a couple of days - then

I'm like " Oh yeah! That's why he's on this. "

No, not everyone has a bad time. They don't post " Help! " to the list much

either. We don't hear as much from the ones that get it nice the first

time. Most of them were fine for both my boys.. we'd just switch around and

mess with doses to see if another would do even better.

Hope that helps...

________________________________

From: Sheryl <ssaturnino@...>

Sent: Tue, December 7, 2010 12:28:03 AM

Subject: ssri's

Dear Listmates,

I need to hear from you regarding ssri's. Does every one have a hard time after

starting them? Have your kids worked through a tough time on one or did you

switch and things got better?

If they do have an awful reaction, once you quit it, does the child become his

self again quickly?

I confess, this just freaks me out. My son was on Keppra for siezures and even

though he was only 4 years old, he said he was " sad " . I called the doctor and

got him off of that so quickly.

So I am just afraid of the suicidal thoughts Bill described and the violence

that another has recently described. This is a real hurdle for me in starting

this protocol. All comments and experiences will be most welcome and

appreciated.

Thank you! Sheryl

[Guest guest]

Petra,

I'm right there with ya. Hang in there and just keep trying. That's all we can

do. Good luck to you.

Sheryl

Sent from my iPhone

On Dec 8, 2010, at 5:12 AM, Gage Vanlandingham <gager292@...> wrote:

I have read so many of these emails regarding the use of SSRI's and they all

seem so supportive of their use to the point that they seem to be represented as

a miracle drug. I really appreciate all the information that I have learned

regarding the SSRI's and I am eager to try to get my MD to look at the

protocol and to try the SSRI's with my daughter. No one has shared much about

the cognitive staus of their kids. My daughter is on the " spectrum " labeled as

mild MR but she spits out words like metallic and tells me its meaning and then

goes back in to her world of nonsense garble. Has any of your children had a

similar label and improved dramatically? I will not let myself believe that a

miracle can happen such as she can fully recover because I would have to accept

that I let her down if it does not happen. I do know I will continue to try

anything that can help her if it is in reason and safe. I want her to be the

most she can be for her.

I love her as she is now but I worry about her future. Please share any info you

are willing to.

Thanks,

Petra

Hi Sheryl,

I personally always had bad reactions to SSRIs, but I recommitted over and over

to trying them again, until I landed w/an SNRI that did well until I developed a

stomach problem (maybe not related - I developed an allergy to half of

everything I was taking and eating at that time).

The first time, the SSRI was a bit rough, but leveled out quickly. Once one was

pretty bad and got stopped immediately.

Sometimes it seems like the med is giving a horrible reaction, you're terrified,

the child is freaking out, and the crazy doctor tells you to up the dose. For

some reason, you actually do it like he suggests (because you know he's got to

be kidding), and they come out on the other side doing soooo much better that

you decide it was worth every moment of fear and stress.

We had a few rough tries, I had a few times of stress where I couldn't figure

out what was good, bad, med, food, up, down, sideways... but SSRIs are almost

always a benefit - very few can't get settled on them. They're neuroprotective,

immune modulating, and show that they increase blood flow to the parts of the

brain lacking. They improve eye contact, connectedness... the reason I keep on

trying them is because I've studied what they can do and I've seen it in my

kids.

It was by far the most frightening part of the protocol. We were off them a

couple of years, and my youngest went on Effexor when ssri wasn't doing enough.

He had been so whiney and soooo OCD for so long that when we started this one

(an SNRI, and did it because I had done so well on it for a year). I've

forgotten what that child was like, what level of obsession and despair when he

couldn't get what he was obsessing about. They only time I see it and remember

it now is when he gets sick and can't take his med for a couple of days - then

I'm like " Oh yeah! That's why he's on this. "

No, not everyone has a bad time. They don't post " Help! " to the list much

either. We don't hear as much from the ones that get it nice the first

time. Most of them were fine for both my boys.. we'd just switch around and

mess with doses to see if another would do even better.

Hope that helps...

________________________________

From: Sheryl <ssaturnino@...>

Sent: Tue, December 7, 2010 12:28:03 AM

Subject: ssri's

Dear Listmates,

I need to hear from you regarding ssri's. Does every one have a hard time after

starting them? Have your kids worked through a tough time on one or did you

switch and things got better?

If they do have an awful reaction, once you quit it, does the child become his

self again quickly?

I confess, this just freaks me out. My son was on Keppra for siezures and even

though he was only 4 years old, he said he was " sad " . I called the doctor and

got him off of that so quickly.

So I am just afraid of the suicidal thoughts Bill described and the violence

that another has recently described. This is a real hurdle for me in starting

this protocol. All comments and experiences will be most welcome and

appreciated.

Thank you! Sheryl

[Guest guest]

Thanks, Joyce. I'm gathering courage to start this next phase in our journey. I

really appreciate every story and point of view .

Sheryl

Sent from my iPhone

On Dec 7, 2010, at 8:29 AM, Joyce Herron <midiman1942@...> wrote:

Sheryl,

Remember not everyone taking a SSRI will have the same reaction. There are

several on the market, if one does not provide the anticipated results, move on

to another.

Personal example, a majority of people who take erythromycin have bad stomach

pain some to the point of seeking ER help. I am allergic to many antibiotics,

but erythromycin is one I can take and have never had any problems with it.

Don't give up on the protocol due to fears of how your child may react to a

SSRI. The kids who have not had a problem with a SSRI's parents do not post

that here. To see how an SSRI is going to work may night be evident for at

least 3 weeks.

Keep fighting for your child which is hard due to the physical and emotional

exhaustion parents of autistic kids experience.

Joyce

From: Sheryl <ssaturnino@...>

Subject: ssri's

Date: Tuesday, December 7, 2010, 6:28 AM

Dear Listmates,

I need to hear from you regarding ssri's. Does every one have a hard time after

starting them? Have your kids worked through a tough time on one or did you

switch and things got better?

If they do have an awful reaction, once you quit it, does the child become his

self again quickly?

I confess, this just freaks me out. My son was on Keppra for siezures and even

though he was only 4 years old, he said he was " sad " . I called the doctor and

got him off of that so quickly.

So I am just afraid of the suicidal thoughts Bill described and the violence

that another has recently described. This is a real hurdle for me in starting

this protocol. All comments and experiences will be most welcome and

appreciated.

Thank you! Sheryl

[Guest guest]

Nah - I didn't keep him home.  Why would I want to torture myself like that?

lol

________________________________

From: Sheryl <ssaturnino@...>

" " < >

Sent: Wed, December 8, 2010 12:26:38 AM

Subject: Re: ssri's

 

Hi, ,

Thank you for taking the time to share.

Did you keep your child home from school during an ssri freak out time? How did

you cope with it? How old was your child when you started and are they doing

well on one now?

Thank you, Sheryl

Sent from my iPhone

On Dec 7, 2010, at 6:45 PM, <thecolemans4@...> wrote:

Hi Sheryl,

I personally always had bad reactions to SSRIs, but I recommitted over and over

to trying them again, until I landed w/an SNRI that did well until I developed a

stomach problem (maybe not related - I developed an allergy to half of

everything I was taking and eating at that time).

The first time, the SSRI was a bit rough, but leveled out quickly. Once one was

pretty bad and got stopped immediately.

Sometimes it seems like the med is giving a horrible reaction, you're terrified,

the child is freaking out, and the crazy doctor tells you to up the dose. For

some reason, you actually do it like he suggests (because you know he's got to

be kidding), and they come out on the other side doing soooo much better that

you decide it was worth every moment of fear and stress.

We had a few rough tries, I had a few times of stress where I couldn't figure

out what was good, bad, med, food, up, down, sideways... but SSRIs are almost

always a benefit - very few can't get settled on them. They're neuroprotective,

immune modulating, and show that they increase blood flow to the parts of the

brain lacking. They improve eye contact, connectedness... the reason I keep on

trying them is because I've studied what they can do and I've seen it in my

kids.

It was by far the most frightening part of the protocol. We were off them a

couple of years, and my youngest went on Effexor when ssri wasn't doing enough.

He had been so whiney and soooo OCD for so long that when we started this one

(an SNRI, and did it because I had done so well on it for a year). I've

forgotten what that child was like, what level of obsession and despair when he

couldn't get what he was obsessing about. They only time I see it and remember

it now is when he gets sick and can't take his med for a couple of days - then

I'm like " Oh yeah! That's why he's on this. "

No, not everyone has a bad time. They don't post " Help! " to the list much

either. We don't hear as much from the ones that get it nice the first

time. Most of them were fine for both my boys.. we'd just switch around and

mess with doses to see if another would do even better.

Hope that helps...

________________________________

From: Sheryl <ssaturnino@...>

Sent: Tue, December 7, 2010 12:28:03 AM

Subject: ssri's

Dear Listmates,

I need to hear from you regarding ssri's. Does every one have a hard time after

starting them? Have your kids worked through a tough time on one or did you

switch and things got better?

If they do have an awful reaction, once you quit it, does the child become his

self again quickly?

I confess, this just freaks me out. My son was on Keppra for siezures and even

though he was only 4 years old, he said he was " sad " . I called the doctor and

got him off of that so quickly.

So I am just afraid of the suicidal thoughts Bill described and the violence

that another has recently described. This is a real hurdle for me in starting

this protocol. All comments and experiences will be most welcome and

appreciated.

Thank you! Sheryl

[Guest guest]

I don't know.  I think I've seen docs combine them but I couldn't say for sure.

I think my son's doc mentioned strattera before...

My boys have been on effexor - an snri - and it's been pretty good.  Not quite

enough, but good.  I can't remember if Dr G uses it or not.

________________________________

From: Rhonda Masengale <rhondamasengale@...>

" " < >

Sent: Tue, December 7, 2010 8:50:29 PM

Subject: Re: ssri's

 

, will an snri work just like an ssri? My oldest is on straterra and

doing very well. Would he need an ssri as well?

Rhonda Masengale

On Dec 7, 2010, at 8:45 PM, <thecolemans4@...> wrote:

> Hi Sheryl,

> I personally always had bad reactions to SSRIs, but I recommitted over and

over

>

> to trying them again, until I landed w/an SNRI that did well until I developed

>a

>

> stomach problem (maybe not related - I developed an allergy to half of

> everything I was taking and eating at that time).

>

> The first time, the SSRI was a bit rough, but leveled out quickly. Once one

was

>

> pretty bad and got stopped immediately.

>

> Sometimes it seems like the med is giving a horrible reaction, you're

>terrified,

>

> the child is freaking out, and the crazy doctor tells you to up the dose. For

> some reason, you actually do it like he suggests (because you know he's got to

> be kidding), and they come out on the other side doing soooo much better that

> you decide it was worth every moment of fear and stress.

>

> We had a few rough tries, I had a few times of stress where I couldn't figure

> out what was good, bad, med, food, up, down, sideways... but SSRIs are almost

> always a benefit - very few can't get settled on them. They're

neuroprotective,

>

> immune modulating, and show that they increase blood flow to the parts of the

> brain lacking. They improve eye contact, connectedness... the reason I keep on

> trying them is because I've studied what they can do and I've seen it in my

> kids.

>

> It was by far the most frightening part of the protocol. We were off them a

> couple of years, and my youngest went on Effexor when ssri wasn't doing

enough.

>

> He had been so whiney and soooo OCD for so long that when we started this one

> (an SNRI, and did it because I had done so well on it for a year). I've

> forgotten what that child was like, what level of obsession and despair when

he

>

> couldn't get what he was obsessing about. They only time I see it and remember

> it now is when he gets sick and can't take his med for a couple of days - then

> I'm like " Oh yeah! That's why he's on this. "

>

> No, not everyone has a bad time. They don't post " Help! " to the list much

> either. We don't hear as much from the ones that get it nice the first

> time. Most of them were fine for both my boys.. we'd just switch around and

> mess with doses to see if another would do even better.

>

> Hope that helps...

>

>

> ________________________________

> From: Sheryl <ssaturnino@...>

>

> Sent: Tue, December 7, 2010 12:28:03 AM

> Subject: ssri's

>

>

> Dear Listmates,

> I need to hear from you regarding ssri's. Does every one have a hard time

after

>

> starting them? Have your kids worked through a tough time on one or did you

> switch and things got better?

>

> If they do have an awful reaction, once you quit it, does the child become his

> self again quickly?

>

> I confess, this just freaks me out. My son was on Keppra for siezures and even

> though he was only 4 years old, he said he was " sad " . I called the doctor and

> got him off of that so quickly.

>

> So I am just afraid of the suicidal thoughts Bill described and the violence

> that another has recently described. This is a real hurdle for me in starting

> this protocol. All comments and experiences will be most welcome and

> appreciated.

>

> Thank you! Sheryl

>

>

[Guest guest]

,

Your comment about not keeping him home because it would torture yourself

made me laugh out loud. I am amazed at how we can still have our sense of

humor with all we do every day to help our kids.

You go girl!!

Marcia