ssri's

[Guest guest]

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]

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]

Hi Sheryl,

I can echo what others have said. It may take a little time to find the right

ssri for your particular child. Some people hit on the right one in the first

try and go with it. Sometimes you have to try a couple. We've been with Dr. G

since March. We started on Paxil in the early summer, but it was not quite

right. It wasn't horrible, we just saw a bit of regression and no real gains

from it. We can expect to see gains from the SSRI, so Dr. G will change it if

there are no observed gains. We were switched to Celexa. So far the Celexa has

been great. Our son is more talkative, more engaged, more focused and (most

excellent) most of his OCD behaviors have gone! Also, his talking, play and

drawing are much more creative and novel.

I, too, was always nervous about meds with our boy, but by the time Dr. G said

on the phone that it was time to start, my husband and I were high 5-ing each

other on our end! The child was driving us crazy and wearing us down--we were

ready to take the leap. Dr. G starts with a minuscule dose and slowly works

up--we're still working up to optimal dose. He is very cautious and monitors

closely. I would say that, as always, he expects you to stay in close contact

with the office when you are establishing the new med. He wants to be sure it is

only beneficial.

Good luck!

Tammy K.

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]

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]

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 so much, Lori!  Your story especially encourages me, because you had

the same fear of ssri's, but then it was wonderful for your son!  Please, God,

it will be the same for my son if we try this.

Thank you!

Sheryl

________________________________

From: Lori <lbharris@...>

Sent: Tue, December 7, 2010 3:44:59 AM

Subject: RE: ssri's

 

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]

Hi, Sheryl.

We have had to adjustments to the SSRIs, but it's mostly self stim and tiredness

as side effects. These go away after 10 to 14 days. Zoloft was not a good fit

for any of my kids, so we moved on pretty quickly. SSRI results include better

attention, clarity, some reduction in self stim behaviors, more language.

Regarding changing a good SSRI, it's mostly in the quest to see if we can get

them even better. For example, we are considering a change for Noah over the

Christmas holiday. He still has some attention issues that might be improved by

switching. If I don't see something positive by the end of vacation, we will

switch back.

HTH,

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]

Sheryl, I really think the key, as Dr. always does, is to start with a

really low dose and be open to see what happens. If it is not good, you can

change to another SSRI. If that one doesn`t go well, then it can be stopped.

A trial is something that you owe your child to see if it can increase the

blood flow to the temporal lobes and benefit him. I regret not doing it

sooner. Stay in contact with Dr. G or Dr. and reach out to the list

for moral support.

Best of luck,

Lori

_____

From: [mailto: ] On Behalf Of Sheryl

Saturnino

Sent: December-07-10 1:32 PM

Subject: Re: ssri's

Thank you so much, Lori! Your story especially encourages me, because you

had

the same fear of ssri's, but then it was wonderful for your son! Please,

God,

it will be the same for my son if we try this.

Thank you!

Sheryl

________________________________

From: Lori <lbharris@... <mailto:lbharris%40cogeco.ca> >

<mailto:%40>

Sent: Tue, December 7, 2010 3:44:59 AM

Subject: RE: ssri's

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:%40>

[mailto: <mailto:%40> ] On Behalf Of

Sheryl

Sent: December-07-10 1:28 AM

<mailto:%40>

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, Robyn,

That's what I guessed might be the reason.  That makes sense. 

Have your son's NK count gone up? (assuming it was ever low)

Thanks,

Sheryl

________________________________

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

Sent: Tue, December 7, 2010 10:53:36 AM

Subject: Re: ssri's

 

Hi, Sheryl.

We have had to adjustments to the SSRIs, but it's mostly self stim and tiredness

as side effects. These go away after 10 to 14 days. Zoloft was not a good fit

for any of my kids, so we moved on pretty quickly. SSRI results include better

attention, clarity, some reduction in self stim behaviors, more language.

Regarding changing a good SSRI, it's mostly in the quest to see if we can get

them even better. For example, we are considering a change for Noah over the

Christmas holiday. He still has some attention issues that might be improved by

switching. If I don't see something positive by the end of vacation, we will

switch back.

HTH,

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]

Hi Cheryl,

We've had the same experiences as Robyn and others, if one doesn't

work, Dr. Golberg will try another.

Good luck!

Argie

On Dec 7, 2010, at 9:07 AM, Robyn & Greg Coggins wrote:

> 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]

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]

, 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]

He is 36 lbs and is on one 10 mg tablet a day...

Colleen

Holden & Dupuy Interiors

colleendesigns@...

6648 Millstone Avenue Baton Rouge, LA 70808

Tel: 225.448.2815 Cell: 225..253.1428

[Guest guest]

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]

Sheryl,

For my son the SSRI brought amazing changes. The thing that helped me try

it after much fear and apprehension is that I knew I could always stop it if

it wasn't helping. For us the antifungal and antiviral helped

tremendously after we went through the die off which was awful. He was

doing great and I was starting to feel hopeful about his future when Dr.

Goldberg threw a wrench in the works. He wanted to start an SSRI

(Selective Serotonin Reuptake Inhibitor) medication. I promptly told him

that we would not give those kinds of drugs. He asked me if my child

had diabetes, would I hesitate to give him insulin? Dr. G explained that

the SSRI was an extremely low dose prescribed because it is an immune

modulator and would improve blood flow to the affected area of 's brain.

I reluctantly agreed, but that not the last of the many heated arguments we

have had over the years.

Almost immediately after we started the SSRI, his teachers reported

tremendous changes. I hadn't told them about our visit to Dr. G. The

normal behaviors observed at home started to occur at school. I got very

positive reports. But it was not until I was the class helper did I realize

how much " more normal " was at school. The change was incredible! He

initiated and sustained various social encounters. I nearly cried when he

spontaneously said " Hi " to the librarian as he passed her in the hall.

Trust your gut, try it. You can always stop it if there are negative

reactions.

Best,

Marcia

P. S. I have often wondered if the people who have suicidal thoughts on

SSRI's were already severely depressed and dealing with these terrible

feelings.