Re: Attention experienced SSRI parents!!!!!

[Guest guest]

Dave,

We had a very similar experience with the SSRI's. Kellen was the sweetest,

most compliant kid ever and then with the introduction of Paxil he

became hyper, aggressive and defiant and no longer the good sleeper he always

was. It has been a LONG journey. We moved and I became pregnant during the

start of this med and we thought all the change was the cause of all these

new behaviors. We switched between paxil, celexa, and zoloft and nothing

agreed with him!

Long story short: We finally agreed to give Prozac a try and he has been

doing remarkably better and we have been pleased to have NO signs of

hyperness and he is sleeping much better than with any of the other SSRI'S.

His OCD has decreased about 25% and he seems much HAPPIER!! We have just

increased the dose (from 1 mg to 2mg) and he seems a bit spacier but has

also come down with a fever so time will tell if it is the med or the fever!!

Good luck and Hang in there!

a

[Guest guest]

Hi Dave,

We didn't do well on Paxcil, especially when we increased the doseage.

s sleep pattern has inproved overall since starting the protocol. We

switched to Celexa about 2 months ago and we are seeing slow improvements.

Just recently his sleeping pattern really improved. Down at 9 sharp and up

at 7:30. This has happened on the tail end of his AIT.

Attention experienced SSRI parents!!!!!

Hi Folks,

I¡¦d appreciate a little advice on finding the ¡§right¡¨ SSRI ¡K always a

tricky subject.

Here¡¦s our situation.

My son started the protocol last July when he was three

years and three months old.

From August to December we saw major progress. At first it was in the

areas of responsiveness and comprehension. Then it was imitation. And

finally, speech in early December. Pretty much every week, there was

something noticeably improved.

Then in mid-December, started Paxil and immediately began to

have sleep problems. He also had a lot of problems focussing on any

one activity for very long and became tough to engage because he

couldn¡¦t sit on one place for long.

He was up every night, bouncing off the ceiling, often until 1 am.

After seven weeks (far too long I think, but we were travelling some

of that time and weren¡¦t sure of that influence) we stopped Paxil and

switched to Celexa.

He¡¦s been on that since Feb 1st. He¡¦s not as agitated, has an easier

time sitting still but we still are not seeing the same kind of

substantial progress each and every week like we were before we

started the SSRI¡¦s. We know this could be coincidence or it might not

be.

now imitates a lot of words and uses some without any

prompting. His eye contact is good and he follows along quite

responsively most of the time, although seems a little foggy first

thing in the morning.

There are two areas, however, in which we feel he¡¦s regressed since

December.

One is his sleep which is still erratic. Most night¡¦s he won¡¦t go to

bed before 10 pm ¡K although it seems more defiance and less agitation

that is keeping him up since we started Celexa. Still, before SSRI¡¦s,

was the PERFECT bedtime kid ¡K every night 7 pm to 7 am with

virtually no exceptions.

The other area, which concerns us more, is interactive play. A lot of

activities which we used to share with : building with blocks,

playing with a ball on the stairs, reading a book to him ¡Khe refuses

to do anymore. Other activities, that are more high-tempo, he has a

better time interacting with but, other than that, he seems to prefer

to play alone.

Unfortunately, during our recent consultation with Dr. Goldberg, we

were not very clear about getting all of this across ¡K but didn¡¦t

really realize it until after the call.

(It's a good idea to write down notes before the call begins)

He suggested we boost the Celexa a bit ¡K and if he doesn't respond

well, then move on and try Zoloft.

Sooooooooooooooo ¡K

My questions to all of you who have been down this road are these:

fÞ based on what I¡¦ve described, does it sound like Celexa might still

be the right SSRI for if we just give it time??

fÞ Or should we be reading these as signs that it¡¦s not the right one

and move on to Zoloft???

fÞ Are there any of you that never did find the right SSRI and just

went on without one ¡K this has popped into my mind because was

still making great progress before we started SSRI¡¦s and has slowed

since they began???

Any and all advice is appreciated.

Dave

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Dave,

Having just been through a rough last few months I can tell you that if your

child indeed needs an SSRI, until the " RIGHT " SSRI is at the " RIGHT " dose,

you may well be frustrated. In the recent course of switching SSRIs (from

Celexa to Zoloft), we went through a period of anxiety (dose too low), then

" OK " (dose just right), then to a rotten week of " bizarre " behaviors (dose

too high) before backing down to the proper dose. Now we see a balance that

is looking good. It was not fun getting to this point but it has been worth

it. We are blessed that we do not have the going to sleep problem... we

have the opposite... ours has a really hard waking up.

The other thing to realize is that there are multiple underlying issues in

many of our kids. We have had a struggle with focus since last fall where

our child (who had been doing gloriously under Dr. Goldberg's care) didn't

seem to have the focus he had been enjoying since starting Nizoral. I

thought that maybe the Nizoral was losing its effectiveness due to a

resistant strain of yeast. We were also at the point where it was time to

change anti-fungals anyway. We communicated our concerns to Dr. Goldberg

and he did change antifungals (to Nystantin, then Diflucan), but we were

very confused because we were seeing some good things mixed with bad. At

that point we had our most frustrating phone consult ever, with us trying to

give Dr. Goldberg something to go on but feeling lost at the same time.

Dr. Goldberg ended up stopping the antifungals just in case they were

throwing our son off in some way.

Dr. Goldberg had been following our son's strep antibodies for months and we

knew there was a possibility that there was a " PANDAS " issue going on. He

prescribed an antibiotic and our son started vomiting, but even through the

vomiting we could see that he was a little brighter. Dr. Goldberg switched

him to a different form of the antibiotic and he felt better, and when he

returned to school, his teacher called me at home in the middle of the day

to say she couldn't believe the change in his focus. She was thrilled....

but we weren't out of the water yet.

Now we are seeing a more focused child, but he is not where he was a year

ago. We are about to start back in on antifungals and I think there is a

good chance that this time they will help a lot since the issue is not being

clouded by underlying infection.

I know this is wordy but I hope that you see my point that this is a long,

complex process. It is unfortunate but the only way we can figure out if

many of these meds will help our kids is by giving them a trial. That is

why we need the new immune modulators. Dr. Goldberg told me once that on

average it takes him two years to get a child's brain and body functioning

the way he would like it to. Hang in there! I wouldn't have my child

treated by anyone else. I have seen what Dr. Goldberg can do for my child

and I am willing to stick it out... I know he will get him back to that

point again (and beyond).

Caroline

[Guest guest]

Caroline,

thanks for the post. Wow, it must be so hard to go forward and then go back.

But it is great for those of us just starting to see a larger picture. Can't

believe a year later he's still behind where he was. Is he performing better in

other area than he was before, even though attention is off? Or do you kind of

step back, treat an underlying issue and take what comes during that time, and

then move forward?

Re: Attention experienced SSRI parents!!!!!

Dave,

Having just been through a rough last few months I can tell you that if your

child indeed needs an SSRI, until the " RIGHT " SSRI is at the " RIGHT " dose,

you may well be frustrated. In the recent course of switching SSRIs (from

Celexa to Zoloft), we went through a period of anxiety (dose too low), then

" OK " (dose just right), then to a rotten week of " bizarre " behaviors (dose

too high) before backing down to the proper dose. Now we see a balance that

is looking good. It was not fun getting to this point but it has been worth

it. We are blessed that we do not have the going to sleep problem... we

have the opposite... ours has a really hard waking up.

The other thing to realize is that there are multiple underlying issues in

many of our kids. We have had a struggle with focus since last fall where

our child (who had been doing gloriously under Dr. Goldberg's care) didn't

seem to have the focus he had been enjoying since starting Nizoral. I

thought that maybe the Nizoral was losing its effectiveness due to a

resistant strain of yeast. We were also at the point where it was time to

change anti-fungals anyway. We communicated our concerns to Dr. Goldberg

and he did change antifungals (to Nystantin, then Diflucan), but we were

very confused because we were seeing some good things mixed with bad. At

that point we had our most frustrating phone consult ever, with us trying to

give Dr. Goldberg something to go on but feeling lost at the same time.

Dr. Goldberg ended up stopping the antifungals just in case they were

throwing our son off in some way.

Dr. Goldberg had been following our son's strep antibodies for months and we

knew there was a possibility that there was a " PANDAS " issue going on. He

prescribed an antibiotic and our son started vomiting, but even through the

vomiting we could see that he was a little brighter. Dr. Goldberg switched

him to a different form of the antibiotic and he felt better, and when he

returned to school, his teacher called me at home in the middle of the day

to say she couldn't believe the change in his focus. She was thrilled....

but we weren't out of the water yet.

Now we are seeing a more focused child, but he is not where he was a year

ago. We are about to start back in on antifungals and I think there is a

good chance that this time they will help a lot since the issue is not being

clouded by underlying infection.

I know this is wordy but I hope that you see my point that this is a long,

complex process. It is unfortunate but the only way we can figure out if

many of these meds will help our kids is by giving them a trial. That is

why we need the new immune modulators. Dr. Goldberg told me once that on

average it takes him two years to get a child's brain and body functioning

the way he would like it to. Hang in there! I wouldn't have my child

treated by anyone else. I have seen what Dr. Goldberg can do for my child

and I am willing to stick it out... I know he will get him back to that

point again (and beyond).

Caroline

[Guest guest]

,

>Wow, it must be so hard to go forward and then go back

It is frustrating to " go back " , but one thing I wish I had mentioned in my

previous post is that my son has never regressed back past where he was when

he first STARTED with Dr. Goldberg. It is hard to tell if he doing better

in other areas because right now he can't keep his focus long enough to do

much of anything. I believe that there is something holding him back and

when we " hit " on it, we are going to see some excellent improvement. We

have seen him doing much better than this before (under Dr. Goldberg's care)

and we know that he has that capability.

> Can't believe a year later he's still behind where he was. Is he performing

> better in other area than he was before, even though attention is off?

When we went through a " bump " changing SSRIs (Celexa to Zoloft), that was a

rough time, but we are now probably better in that area now than we were

with Celexa... conversation seems a little more " normal " and he is a little

more able to get what he wants to say out. On Celexa, he would sometimes

start a sentence over three or four times before he could finish it. It's

hard to tell how he is doing with such poor focus right now, but we do think

we see the above things.

Last year he had strep right before his initial appointment with Dr.

Goldberg and was on antibiotics then... that may be why he was doing better.

He was on antibiotics again last winter for various issues, and each time he

had a round of antibiotics, it probably knocked the underlying infection

back a bit. Somewhere along in there, he gave us a clue by having of his

best days ever right after starting an antibiotic (but he came down with a

virus after starting the antibiotic, which muddied things). Then over the

summer he was " healthy " (no antibiotics) and I think that gave the

underlying infection a chance to take hold... we saw his focus slipping away

but didn't know why. No other Dr. we know would have figured out the

connection, but Dr. Goldberg carefully worked it out. It took a while, but

we appreciate Dr. Goldberg's extreme care in changing variables slowly.

One other thought... when we see a regression after stopping or changing a

med, it is one way for us to tell that the meds really are helping and that

our son's improvement cannot just be chalked up to maturity. It isn't fun,

but it has given us confidence that we are on the right path.

> ... it is great for those of us just starting to see a larger picture.

Thanks... I have learned so much from this group that I wonder sometimes how

the patients' parents cope who are not members. It helps me immensely to

know what others have been through. Our kids are very different but there

are a lot of us and we can often get answers here. It has helped me to get

a grip on what we are trying to accomplish with our child. We have to keep

the " big " picture in mind.

> do you kind of step back, treat an underlying issue and take what comes during

> that time, and then move forward?

I think the way we have done it is to work with Dr. Goldberg in going after

the symptom which is most obvious or problematic at that time. Clues from

our son's lab work have been crucial in deciding his path of treatment. In

our phone consults, we try to be very clear about what the present struggles

are and prioritize them. Our son was having focus problems, but when he was

spending class periods crawling under a table and refusing to come out and

screaming and crying every day, the focus took a back seat (he wasn't

getting any schoolwork done anyway). The first two problems were more

likely to be solved by getting the SSRI under control (and we hoped we were

part way there), so we got that straightened out first. Now that he has

come out from under the table, and the anxiety has reduced dramatically,

we'll work on the focus.

We had a great phone consultation with Dr. G last night and will be

re-trying the antifungal and starting Kutapressin very soon. I feel

enthusiastic about where we are headed. It is hard to be patient but we

just keep thinking about the long-term goal.

Best of luck to you.

Caroline

[Guest guest]

Caroline,

Thank you for taking the time with such a detailed reply. I am getting ready to

broach the whole idea to my husband and this post has a lot of good info in

it.

Yes, think you are right. No other doctor would have taken the time to figure

out what was going on with your son's focus and determine that there was an

underlying infection. My husband and I had an argument just this morning

because I said our peditrician doesn't care. He said she does. Well, ok, yes,

if our son has an ear infection. Beyond that, no. She told me she doesn't even

think she can support and that yeast treatment is very " fringe. " She can

just write it off because it is not her 7 yr. old son or her 9 yr. old daughter.

Anyway, sorry to vent, but I am very anxious for our May appt. so someone will

finally take a look at what is going on with my child. He has been diagnosed

autistic, and he is not, it is something else, and all the " professionals " just

think I'm crazy. I hope that after May I will no longer be crazy.

Re: Attention experienced SSRI parents!!!!!

,

>Wow, it must be so hard to go forward and then go back

It is frustrating to " go back " , but one thing I wish I had mentioned in my

previous post is that my son has never regressed back past where he was when

he first STARTED with Dr. Goldberg. It is hard to tell if he doing better

in other areas because right now he can't keep his focus long enough to do

much of anything. I believe that there is something holding him back and

when we " hit " on it, we are going to see some excellent improvement. We

have seen him doing much better than this before (under Dr. Goldberg's care)

and we know that he has that capability.

> Can't believe a year later he's still behind where he was. Is he performing

> better in other area than he was before, even though attention is off?

When we went through a " bump " changing SSRIs (Celexa to Zoloft), that was a

rough time, but we are now probably better in that area now than we were

with Celexa... conversation seems a little more " normal " and he is a little

more able to get what he wants to say out. On Celexa, he would sometimes

start a sentence over three or four times before he could finish it. It's

hard to tell how he is doing with such poor focus right now, but we do think

we see the above things.

Last year he had strep right before his initial appointment with Dr.

Goldberg and was on antibiotics then... that may be why he was doing better.

He was on antibiotics again last winter for various issues, and each time he

had a round of antibiotics, it probably knocked the underlying infection

back a bit. Somewhere along in there, he gave us a clue by having of his

best days ever right after starting an antibiotic (but he came down with a

virus after starting the antibiotic, which muddied things). Then over the

summer he was " healthy " (no antibiotics) and I think that gave the

underlying infection a chance to take hold... we saw his focus slipping away

but didn't know why. No other Dr. we know would have figured out the

connection, but Dr. Goldberg carefully worked it out. It took a while, but

we appreciate Dr. Goldberg's extreme care in changing variables slowly.

One other thought... when we see a regression after stopping or changing a

med, it is one way for us to tell that the meds really are helping and that

our son's improvement cannot just be chalked up to maturity. It isn't fun,

but it has given us confidence that we are on the right path.

> ... it is great for those of us just starting to see a larger picture.

Thanks... I have learned so much from this group that I wonder sometimes how

the patients' parents cope who are not members. It helps me immensely to

know what others have been through. Our kids are very different but there

are a lot of us and we can often get answers here. It has helped me to get

a grip on what we are trying to accomplish with our child. We have to keep

the " big " picture in mind.

> do you kind of step back, treat an underlying issue and take what comes

during

> that time, and then move forward?

I think the way we have done it is to work with Dr. Goldberg in going after

the symptom which is most obvious or problematic at that time. Clues from

our son's lab work have been crucial in deciding his path of treatment. In

our phone consults, we try to be very clear about what the present struggles

are and prioritize them. Our son was having focus problems, but when he was

spending class periods crawling under a table and refusing to come out and

screaming and crying every day, the focus took a back seat (he wasn't

getting any schoolwork done anyway). The first two problems were more

likely to be solved by getting the SSRI under control (and we hoped we were

part way there), so we got that straightened out first. Now that he has

come out from under the table, and the anxiety has reduced dramatically,

we'll work on the focus.

We had a great phone consultation with Dr. G last night and will be

re-trying the antifungal and starting Kutapressin very soon. I feel

enthusiastic about where we are headed. It is hard to be patient but we

just keep thinking about the long-term goal.

Best of luck to you.

Caroline

[Guest guest]

,

Glad to be of some help. I was lucky in that our pediatrician already had a

couple of other kids who were under Dr. Goldberg's care when we started the

whole thing. He has been very supportive and we are grateful. He does

not, however, attempt to treat any kids in his care. He just doesn't

have enough information to go on. He watched the December videoconference

and even looked things up on Dr. Goldberg's website. He said he can order

the blood work but when it comes back he just doesn't know what to do with

it.

I can understand about broaching the subject with your husband. I talked

about for months without my husband seeming to take much interest. I

think he thought I was grasping at straws, but I kept asking around at

different medical facilities and positive good reports about Dr. Goldberg.

Finally, one day I got up the nerve to call Dr. Goldberg's office and ask

for the paperwork to be sent for an appointment. I sat on that paperwork

for several months stressing over it (I reorganized the whole medical

history, indexed it according to tests run, chronologically, you name it!).

I finally sent it in. When we got the call for the appointment I told my

husband, and I think he still thought that it was months away and I'd get

over it. About two weeks before the appointment he started reading the

information I had compiled. At that point I think he got more curious and

also gave up!

After seeing our son's improvement, my husband is totally on board and more

picky about the diet than I am! He never misses a phone consultation if he

can help it and is in on every update.

>I hope that after May I will no longer be crazy.

I know that " crazy " feeling... for me it was stress over having the world on

my shoulders. It has lifted a great burden from our lives to go from

hopelessness to the possibility of a very bright future for our child. It

also feels great to know that there is someone helping us to make sound

medical decision about our child's care. I love knowing that Dr. Goldberg

has a lot of absolutely top notch people advising him.

You might want to call around and ask other pediatric practices in your area

if any of the doctors there have kids seeing Dr. Goldberg. I am very

surprised at the number going from this smallish town in Indiana (Kokomo).

If your pediatrician could talk to another doctor who is " friendly " it

might soothe her a little bit.

Hang in there!

Caroline

> On 3/14/03 5:47 PM, " susan wald " <susanwald@...> wrote:

> Caroline,

>

> Thank you for taking the time with such a detailed reply. I am getting ready

> to broach the whole idea to my husband and this post has a lot of good

> info in it.

>

> Yes, think you are right. No other doctor would have taken the time to figure

> out what was going on with your son's focus and determine that there was an

> underlying infection. My husband and I had an argument just this morning

> because I said our peditrician doesn't care. He said she does. Well, ok,

> yes, if our son has an ear infection. Beyond that, no. She told me she

> doesn't even think she can support and that yeast treatment is very

> " fringe. " She can just write it off because it is not her 7 yr. old son or

> her 9 yr. old daughter.

>

> Anyway, sorry to vent, but I am very anxious for our May appt. so someone will

> finally take a look at what is going on with my child. He has been diagnosed

> autistic, and he is not, it is something else, and all the " professionals "

> just think I'm crazy. I hope that after May I will no longer be crazy.

>

>

[Guest guest]

HI, I have been lurking for some time, rarely speaking, because I opted not

to take the trip to cal. for my teenager who has a tic disorder. But , I did

try to get the bloodwork done here in the ny area. However, my doctor sent

me directly to a Quest lab. they said they couldnt do it! I want to know if

anyone in the ny area knows of a lab or docotor who will do it? I am still

interested to do testing, even if we dont opt for the protocol. thanks B lief

[Guest guest]

new york area

[Guest guest]

in elmsford they were totally unhelpful, never got back to me after telling

me that they didnt think they could do these tests

[Guest guest]

Hi,

What area are you in?

bonniedanphil@... wrote:

HI, I have been lurking for some time, rarely speaking, because I opted not

to take the trip to cal. for my teenager who has a tic disorder. But , I did

try to get the bloodwork done here in the ny area. However, my doctor sent

me directly to a Quest lab. they said they couldnt do it! I want to know if

anyone in the ny area knows of a lab or docotor who will do it? I am still

interested to do testing, even if we dont opt for the protocol. thanks B lief

[Guest guest]

Hi

I wonder if you could let me know, by email, who your doctor was- since mine

sent me directly to this dumb lab(quest) where they were not helpful. thanks

-Bonnie