Re: Re:Yelling/HowLong?????

[Guest guest]

Anyone have an estimation as to how long it takes to " heal the immune system " ?

Thanks~~

Rose

PS~~Remember, I know every child is different.

Re:Yelling, tantruming, etc...

To Listmembers:

My daughter, now 10, on the protocol since age 7 is

behaving just the opposite as being described here in regard

to the posts on " yelling " .

In school, she gives everyone a hard time, even with the care-

taker and grandparents, but at home she listens and bounces

right back on track when she misbehaves.

Since we are more strict with her at home, she knows she can

get away with behaving badly with other individuals. There are

just so many issues we are all dealing with. The time it is taking

to heal the immune system, the age of the child, etc.. etc..

Any feedbacks or advice would be appreciated.

Michele Davies

[Guest guest]

I wouldn't necessarily call it a positive signal in

all cases, but depending on what the child was like

before, could be considered an " improvement " . For

instance, if the child was unexpressive of emotions

before, yelling being new is indicative of a leap in

emotional development. In my son's case, yes he was

improving by being able to adjust his volume (always

talked the same volume no matter what-had no

modulation), but the yelling itself was a result of

stress and hurt feelings and imitation of me (because

I had yelled at him). On one hand, it was a big leap

in development, but the environment I was providing at

the time that leap happened was too stressful for him

at the time. A normal kid would likely have not

reacted as intensly as he did. But all in all it was

a sign of developmental leap but I sure wish it had

been a little smoother and that I had not impacted him

that way during such a critical phase. I would

recommend all parents, when faced with a child who is

just starting to yell, quickly evaluate the emotional

environment at that time, recognize they are likely

unable to handle much intensity, and seek to calm it

as much as possible so that while they are in this

fragile stage where it is so hard to modulate their

emotions, that they are not given more than they can

handle.

But at the same time, it's great to see my son

expressing his frustration or anger verbally instead

of banging his head and melting down into a tantrum,

or withdrawing and completely ignoring everything

around him, etc etc. It is a huge leap, and it came

shortly after starting Valtrex - not a behavioral

reaction but a major leap in emotional/cognitive

functioning. As soon as I stopped yelling for a

couple of months, it improved, and I think he's doing

a pretty commendable job of controlling his emotions

considering his age (4 this month). I've seen typical

children yell a lot more than he does.

--- dawfogle <dawfogle@...> wrote:

> So is yelling a sign that the immune system is

> healing or when they

> stop? Hayden has only been on the anti-virals for

> three weeks with

> the two weeks of cortef and on Provigil. Thanks for

> all the

> infromation this is a great board. Dena

>

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[Guest guest]

My son is 12 and is expressing anger much moreso than

he ever did. He has meltdowns over somewhat small

things, which he never had before. He used to be such

an amiable, sweet child. He must be going thru

similar things as have been expressed, as he responds

to the nids treatments. It is manageable, but as

you've said, we have to work very hard around here,

not to escalate the situation by yelling or creating

stress for him. He is definitely in a more fragile

state, and he is 9 mos. into the treatment. This

started manifesting itself about a month into the

treatment. He is also more compulsive and obsessive

about things than he was before. I have found that

when he gets really upset, I can get him calmed down

by turning the tv on to something he likes to watch or

reading to him from a favorite book of comics.

Distraction works pretty well in our case. Barb

--- <thecolemans4@...> wrote:

> I wouldn't necessarily call it a positive signal in

> all cases, but depending on what the child was like

> before, could be considered an " improvement " . For

> instance, if the child was unexpressive of emotions

> before, yelling being new is indicative of a leap in

> emotional development. In my son's case, yes he was

> improving by being able to adjust his volume (always

> talked the same volume no matter what-had no

> modulation), but the yelling itself was a result of

> stress and hurt feelings and imitation of me

> (because

> I had yelled at him). On one hand, it was a big

> leap

> in development, but the environment I was providing

> at

> the time that leap happened was too stressful for

> him

> at the time. A normal kid would likely have not

> reacted as intensly as he did. But all in all it

> was

> a sign of developmental leap but I sure wish it had

> been a little smoother and that I had not impacted

> him

> that way during such a critical phase. I would

> recommend all parents, when faced with a child who

> is

> just starting to yell, quickly evaluate the

> emotional

> environment at that time, recognize they are likely

> unable to handle much intensity, and seek to calm it

> as much as possible so that while they are in this

> fragile stage where it is so hard to modulate their

> emotions, that they are not given more than they can

> handle.

>

> But at the same time, it's great to see my son

> expressing his frustration or anger verbally instead

> of banging his head and melting down into a tantrum,

> or withdrawing and completely ignoring everything

> around him, etc etc. It is a huge leap, and it came

> shortly after starting Valtrex - not a behavioral

> reaction but a major leap in emotional/cognitive

> functioning. As soon as I stopped yelling for a

> couple of months, it improved, and I think he's

> doing

> a pretty commendable job of controlling his emotions

> considering his age (4 this month). I've seen

> typical

> children yell a lot more than he does.

--- dawfogle <dawfogle@...> wrote:

> > So is yelling a sign that the immune system is

> > healing or when they

> > stop? Hayden has only been on the anti-virals for

> > three weeks with

> > the two weeks of cortef and on Provigil. Thanks

> > for all the infromation this is a great board. Dena

______________________________

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the original author, and is not necessarily endorsed

by or the

opinion of the Research Institute.

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__________________________________

[Guest guest]

He also could be going through puberty, which I have heard affects our kids

dramatically (the hormone thing), just like NT kids. Kathy

Re: Re:Yelling/HowLong?????

My son is 12 and is expressing anger much moreso than

he ever did. He has meltdowns over somewhat small

things, which he never had before. He used to be such

an amiable, sweet child. He must be going thru

similar things as have been expressed, as he responds

to the nids treatments. It is manageable, but as

you've said, we have to work very hard around here,

not to escalate the situation by yelling or creating

stress for him. He is definitely in a more fragile

state, and he is 9 mos. into the treatment. This

started manifesting itself about a month into the

treatment. He is also more compulsive and obsessive

about things than he was before. I have found that

when he gets really upset, I can get him calmed down

by turning the tv on to something he likes to watch or

reading to him from a favorite book of comics.

Distraction works pretty well in our case. Barb

==== MESSAGE THREAD TRUNCATED ====

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

opinion of the Research Institute.

```````````````````````````````````````

[Guest guest]

He shows no signs of puberty, but I suppose it could

be starting. Barb

--- evchk96@... wrote:

> He also could be going through puberty, which I have

> heard affects our kids dramatically (the hormone

> thing), just like NT kids. Kathy

>

Re: Re:Yelling/HowLong?????

> My son is 12 and is expressing anger much moreso

> than he ever did. He has meltdowns over somewhat small

> things, which he never had before. He used to be

> such

> an amiable, sweet child. He must be going thru

> similar things as have been expressed, as he

> responds

> to the nids treatments. >>>>

==== MESSAGE THREAD TRUNCATED ====

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the original author, and is not necessarily endorsed

by or the

opinion of the Research Institute.

```````````````````````````````````````

=====

Barb Katsaros

barbkatsaros@...

_________________________________

[Guest guest]

Dr G said the average is 2 years. Some less, some

need to stay on maintenance meds for longer if they

regress when attempting to stop the protocol.

--- Rose Derkay <Momusic40@...> wrote:

> Anyone have an estimation as to how long it takes to

> " heal the immune system " ?

> Thanks~~

> Rose

> PS~~Remember, I know every child is different.

*********************************

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]

We have been with Dr. G for 7 years. We are doing great but still on a

number of meds. Lori in PA

[Guest guest]

Lori~~

Would you mind elaborating a bit. Has your son's immune system healed? Is he

anywhere near " recovery " . Do you think it's all been worthwhile?

Thanks~~

Rose

Re: Re:Yelling/HowLong?????

We have been with Dr. G for 7 years. We are doing great but still on a

number of meds. Lori in PA

______________________________

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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]

Hi all, It depends on what you call " healed " . He is 9 years old and going

into the third grade. He is in a regular classroom (as he has been since

kindergarten). He has a full time aide who intervenes with him when he is 1)not

paying attention, 2)doesn't understand the directions or 3)is generally off

task. This intervention has been less and less throughout the school years. By

the end of last year she was reminding him less than 12 times for the whole

school day. She does not even go into such classes as music, gym, etc.. We

expect him to do all the school work that the other kids are required. We

actually hold him to a somewhat higher standard than most because we know he can

do

it. His sister is gifted (which I know does not mean he would have been--but

he is clearly also bright). Many things he picks up easily on his own. Math

and spelling are very easy. Reading comprehension and the verbal retelling

of stories is much harder. He still performs around the middle of the class in

those areas though. We work all summer on what he will encounter in the next

year. We have worked on fast forward (#3) this summer to further help with

reading comprehension and auditory processing.

He takes regular gymnastics class, horseback riding, and piano. He is

somewhat distracted at times in these activities (more so than most of the

class) but the teacher can always easily pull him back and he loves the

activities.

He has friends at school who like to come home with him to play. He

gets invited to birthday parties etc... but needs to work a little more on his

conversation with his peers. (an ongoing struggle).

He is very easy to take places--Hershey Park (yes we live in PA),

Disneyworld is his favorite place on earth, laser tag games, flying to CA,

family

vacations, shopping etc... This is all very typical for him but has not always

been that way.

We are still on meds and watch his diet. When he gets dairy

accidentally, he does not go off the deep end. When we make a medication

change, we see

the results in the bloodwork first before we see it behaviorally (if we ever

see it behaviorally--usually we just see it in the lab values). We still are

on an antifungal, antiviral, kutapressin, and ssri. Some of this we are

decreasing as we speak and some we don't know if we ever will be able to.

I hope this helps. He is so much healthier now--but still has lingering

language issues. His processing is so much better. He gets the idea of

doing chores, earning allowance, and spending it as he pleases. This kind of

higher critical thinking is coming in strong this summer. He really " gets " a

lot

of things he didn't before. It's been a long road, but worth every minute of

the journey. It was the best thing we did for him. Lori in PA

[Guest guest]

Hi Donna, We started with Dr. G when my little one was 2yrs 3 mo old. He is

almost 9.5 now. Lori in PA

[Guest guest]

Hi Lori,

When did you start the protocol?

Donna

Re: Re:Yelling/HowLong?????

Hi all, It depends on what you call " healed " . He is 9 years old and going

into the third grade. He is in a regular classroom (as he has been since

kindergarten). He has a full time aide who intervenes with him when he is

1)not

paying attention, 2)doesn't understand the directions or 3)is generally off

task. This intervention has been less and less throughout the school years.

By

the end of last year she was reminding him less than 12 times for the whole

school day. She does not even go into such classes as music, gym, etc.. We

expect him to do all the school work that the other kids are required. We

actually hold him to a somewhat higher standard than most because we know he

can do

it. His sister is gifted (which I know does not mean he would have been--but

he is clearly also bright). Many things he picks up easily on his own. Math

and spelling are very easy. Reading comprehension and the verbal retelling

of stories is much harder. He still performs around the middle of the class

in

those areas though. We work all summer on what he will encounter in the next

year. We have worked on fast forward (#3) this summer to further help with

reading comprehension and auditory processing.

He takes regular gymnastics class, horseback riding, and piano. He is

somewhat distracted at times in these activities (more so than most of the

class) but the teacher can always easily pull him back and he loves the

activities.

He has friends at school who like to come home with him to play. He

gets invited to birthday parties etc... but needs to work a little more on his

conversation with his peers. (an ongoing struggle).

He is very easy to take places--Hershey Park (yes we live in PA),

Disneyworld is his favorite place on earth, laser tag games, flying to CA,

family

vacations, shopping etc... This is all very typical for him but has not

always

been that way.

We are still on meds and watch his diet. When he gets dairy

accidentally, he does not go off the deep end. When we make a medication

change, we see

the results in the bloodwork first before we see it behaviorally (if we ever

see it behaviorally--usually we just see it in the lab values). We still are

on an antifungal, antiviral, kutapressin, and ssri. Some of this we are

decreasing as we speak and some we don't know if we ever will be able to.

I hope this helps. He is so much healthier now--but still has lingering

language issues. His processing is so much better. He gets the idea of

doing chores, earning allowance, and spending it as he pleases. This kind of

higher critical thinking is coming in strong this summer. He really " gets " a

lot

of things he didn't before. It's been a long road, but worth every minute of

the journey. It was the best thing we did for him. Lori in PA

[Guest guest]

Thanks Lori. Good for you and him and that's just the thing I needed to hear.

All the best~~

Rose

Re: Re:Yelling/HowLong?????

Hi all, It depends on what you call " healed " . He is 9 years old and going

into the third grade. He is in a regular classroom (as he has been since

kindergarten). He has a full time aide who intervenes with him when he is

1)not

paying attention, 2)doesn't understand the directions or 3)is generally off

task. This intervention has been less and less throughout the school years.

By

the end of last year she was reminding him less than 12 times for the whole

school day. She does not even go into such classes as music, gym, etc.. We

expect him to do all the school work that the other kids are required. We

actually hold him to a somewhat higher standard than most because we know he

can do

it. His sister is gifted (which I know does not mean he would have been--but

he is clearly also bright). Many things he picks up easily on his own. Math

and spelling are very easy. Reading comprehension and the verbal retelling

of stories is much harder. He still performs around the middle of the class

in

those areas though. We work all summer on what he will encounter in the next

year. We have worked on fast forward (#3) this summer to further help with

reading comprehension and auditory processing.

He takes regular gymnastics class, horseback riding, and piano. He is

somewhat distracted at times in these activities (more so than most of the

class) but the teacher can always easily pull him back and he loves the

activities.

He has friends at school who like to come home with him to play. He

gets invited to birthday parties etc... but needs to work a little more on his

conversation with his peers. (an ongoing struggle).

He is very easy to take places--Hershey Park (yes we live in PA),

Disneyworld is his favorite place on earth, laser tag games, flying to CA,

family

vacations, shopping etc... This is all very typical for him but has not

always

been that way.

We are still on meds and watch his diet. When he gets dairy

accidentally, he does not go off the deep end. When we make a medication

change, we see

the results in the bloodwork first before we see it behaviorally (if we ever

see it behaviorally--usually we just see it in the lab values). We still are

on an antifungal, antiviral, kutapressin, and ssri. Some of this we are

decreasing as we speak and some we don't know if we ever will be able to.

I hope this helps. He is so much healthier now--but still has lingering

language issues. His processing is so much better. He gets the idea of

doing chores, earning allowance, and spending it as he pleases. This kind of

higher critical thinking is coming in strong this summer. He really " gets " a

lot

of things he didn't before. It's been a long road, but worth every minute of

the journey. It was the best thing we did for him. Lori in PA

[Guest guest]

Lori,

We've been with Dr. G for only 5 months, on multiple meds. How long do you

expect to be on the protocol and how many meds have you been through in

seven years? It seems like an awfully long time to kill a virus and deliver a

" bright & alert " child, as Dr. G puts it. Thanks for your comments.

Re: Re:Yelling/HowLong?????

We have been with Dr. G for 7 years. We are doing great but still on a

number of meds. Lori in PA

______________________________

``````````````````````````````

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.

```````````````````````````````````````

______________________________________________

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]

GOOD QUESTION!!!!!!!!!

Rose

Re: Re:Yelling/HowLong?????

We have been with Dr. G for 7 years. We are doing great but still on a

number of meds. Lori in PA

______________________________

``````````````````````````````

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.

```````````````````````````````````````

______________________________________________

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]

We've been on the protocol for a year, and I've asked this same question of

other parents and Dr. Goldberg. Here's what I understand: It depends on your

child's age and the nature/severity of the immune issues, and whether your

child's immune system starts working properly on its own. Older children can

take much longer to recover because they've been sick longer and because there's

been more damage to their immune systems than younger children. You can't

" kill " a virus and therefore be cured; you can only help ease the viral load so

that the immune system can start doing the work it's supposed to do. Same thing

with antifungals. Once immune modulators become available for our children,

there won't be the same need to keep children on these " drug cocktails " . Dr. G

tried 'weaning' our son off the antiviral, but after 3 weeks, he started to

backslide (diarrhea and behavior issues), so we knew it was too soon. Some

children's immune systems start functioning very well and they can go without

the meds, but as it stands now, there are others who need to stay on them

indefinitely in order to function optimally.

I think Marcia's Hinds said that her son, who is 15 and 'recovered' (anyone hear

from her lately? She hasn't posted in a while) still needs to take antifungals,

or his OCD symptoms come back.

Donna

Re: Re:Yelling/HowLong?????

We have been with Dr. G for 7 years. We are doing great but still on a

number of meds. Lori in PA

______________________________

``````````````````````````````

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.

```````````````````````````````````````

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]

Hi, Yes, seven years is a long time, but it has been well worth it. He is

now in 3rd grade and really functioning well. He learns with the other kids

and is really smarter than most of them. He still has a missing piece--his

inability to continue to pay attention even when he's bored or really doesn't

want to listen. This is a far cry from the non-verbal, crying child we started

with. We are decreasing meds--we went off one this summer and decreased

another. We still take an ssri, antiviral (lowering the dose) and an

antifungal.

It is a lot, but when we have tried to lower the dosage we would see a change

in the bloodwork. He is far enough along that we did not see a behavior

change, but a change in the bloodwork that we feel if not fixed would lead to a

behavior change. I'm not sure how long we'll have to continue along this path.

For now it works so I'm not going to rock the boat. We will probably do the

diet until at least puberty (I outgrew some funky food allergies in my teens).

As far as the meds--we're decreasing what we can and watching very carefully.

We are still, however, looking for the last missing piece. Maybe it is just

maturity--and catch up from the years of being behind??? We're not sure but

glad we are getting there. I hope this helps. Lori in PA

[Guest guest]

Dear Lori,

THANK YOU! You have really made may day:) Our son is 5 years old now and in

Developmental Kindergarten. He only wants to scrip or video talk and wants

nothing to do with his peers. This has us worried because we don't know it he

will be in regular Kindergarten next year or if he will ever be " typical " .

Hearing stories like yours really does help to keep up with all the medications

and therapies. Don't take me wrong we strongly believe in Dr. Goldberg and

and thank GOD every day! It's just very hard at times..

May God bless your family.

Sincerely,

Argie in CA

Re: Re:Yelling/HowLong?????

Hi, Yes, seven years is a long time, but it has been well worth it. He is

now in 3rd grade and really functioning well. He learns with the other kids

and is really smarter than most of them. He still has a missing piece--his

inability to continue to pay attention even when he's bored or really doesn't

want to listen. This is a far cry from the non-verbal, crying child we

started

with. We are decreasing meds--we went off one this summer and decreased

another. We still take an ssri, antiviral (lowering the dose) and an

antifungal.

It is a lot, but when we have tried to lower the dosage we would see a change

in the bloodwork. He is far enough along that we did not see a behavior

change, but a change in the bloodwork that we feel if not fixed would lead to

a behavior change. I'm not sure how long we'll have to continue along this

path.

For now it works so I'm not going to rock the boat. We will probably do the

diet until at least puberty (I outgrew some funky food allergies in my teens).

As far as the meds--we're decreasing what we can and watching very carefully.

We are still, however, looking for the last missing piece. Maybe it is just

maturity--and catch up from the years of being behind??? We're not sure but

glad we are getting there. I hope this helps. Lori in PA

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]

Dear Argie in CA,

I'm glad our story helped! Please feel free to email me anytime you

would like. I Sooooo remember the long haul and the darker days. Those

memories

will always be with me but they are constantly being replaced by better ones!!

Keep up the good work. Lori in PA

[Guest guest]

Just wanted to mention that my son (on the protocol

since January) is now in typical preschool. He is in

the 3 year old class this year even though he turned 4

in August, since I thought they would be much more

tolerant of him and his lack of social skills than his

age group would be, and still provide good examples.

He has been there 6 weeks, and at first he did not

even look at the other kids, although he would talk

fine to the teachers (he has no more speech delays

since he dropped his echolalia back in November after

3 days on Diflucan). A couple of days ago, I found

out he has a couple of boys that he will sit and cut

up with, laugh with, be silly, imitate, etc. And the

day I learned this, we went to a Mc's

playground, where a 5 yr old boy was playing, and he

went up to him, smiled, started copying him. The boy

said " Hey! You wanna play chase? Cops and Robbers?

Get me! " and took off running. Garrett laughed, and

ran after him. They played that way at least half an

hour.

My mind was blown. At the rate he was going, I felt I

had at least 2 years before I needed to start

expecting him to interact particularly well socially

(I was giving myself lots of time before I wanted to

allow myself to panic). This, in 6 weeks?!!, was far

better than I even dared to hope. This is even while

he is " off " , looking spacey sometimes, yelling and

rebelling against everything, etc. If he did that

well while his issues are still not worked out, well

all I can say is Wow. It has not even been a year

since all he could do was repeat what I said, did not

approach me to ask for something - just started saying

" Want milk? want milk? " in the middle of his

repetitive play, scripting, incapable of answering any

question, even yes or nos. Come November it will be

one year since that. Talk about progress!

Don't give up hope. Don't even set your expectations

low.

--- golivo <golivo@...> wrote:

> Dear Lori,

> THANK YOU! You have really made may day:) Our son

> is 5 years old now and in Developmental

> Kindergarten. He only wants to scrip or video talk

> and wants nothing to do with his peers. This has us

> worried because we don't know it he will be in

> regular Kindergarten next year or if he will ever be

> " typical " . Hearing stories like yours really does

> help to keep up with all the medications and

> therapies. Don't take me wrong we strongly believe

> in Dr. Goldberg and and thank GOD every day!

> It's just very hard at times..

>

> May God bless your family.

> Sincerely,

> Argie in CA

Re: Re:Yelling/HowLong?????

> Hi, Yes, seven years is a long time, but it has

> been well worth it. He is

> now in 3rd grade and really functioning well. He

> learns with the other kids

> and is really smarter than most of them. He still

> has a missing piece--his

> inability to continue to pay attention even when

> he's bored or really doesn't

> want to listen. This is a far cry from the

> non-verbal, crying child we started

> with. We are decreasing meds--we went off one

> this summer and decreased

> another. >>>>>

//message truncated//

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[Guest guest]

,

That is wonderful! I just wanted to mention that in kindergarten, my son

also would not speak to other children at school (only adults), but that he

did much better one on one... I think when he was not being overwhelmed with

input from all directions, he just coped better. That's also why his best

time has always been in bed at night right after we turn the lights off...

very quiet and no visual override.

Over the years since starting with Dr. Goldberg, my son's ability to

interact is much better. He is still lost on the soccer field, though... he

says he wants to play, but when he gets out there, he sort of spaces out and

doesn't notice the coach calling to him, or react to kick or chase the ball.

We play AYSO and they let us put in the younger age group, which was nice.

Oh well... he looks cute in his uniform!

Caroline

[Guest guest]

Hi ,

This is just the type of post that I needed to see today! Congratulations on

your sons progress, it sounds like he's well on his way to a full recovery!

May all your hopes and dreams for his future be fulfilled....

Take care,

Re: Re:Yelling/HowLong?????

Just wanted to mention that my son (on the protocol

since January) is now in typical preschool. He is in

the 3 year old class this year even though he turned 4

in August, since I thought they would be much more

tolerant of him and his lack of social skills than his

age group would be, and still provide good examples.

He has been there 6 weeks, and at first he did not

even look at the other kids, although he would talk

fine to the teachers (he has no more speech delays

since he dropped his echolalia back in November after

3 days on Diflucan). A couple of days ago, I found

out he has a couple of boys that he will sit and cut

up with, laugh with, be silly, imitate, etc. And the

day I learned this, we went to a Mc's

playground, where a 5 yr old boy was playing, and he

went up to him, smiled, started copying him. The boy

said " Hey! You wanna play chase? Cops and Robbers?

Get me! " and took off running. Garrett laughed, and

ran after him. They played that way at least half an

hour.

My mind was blown. At the rate he was going, I felt I

had at least 2 years before I needed to start

expecting him to interact particularly well socially

(I was giving myself lots of time before I wanted to

allow myself to panic). This, in 6 weeks?!!, was far

better than I even dared to hope. This is even while

he is " off " , looking spacey sometimes, yelling and

rebelling against everything, etc. If he did that

well while his issues are still not worked out, well

all I can say is Wow. It has not even been a year

since all he could do was repeat what I said, did not

approach me to ask for something - just started saying

" Want milk? want milk? " in the middle of his

repetitive play, scripting, incapable of answering any

question, even yes or nos. Come November it will be

one year since that. Talk about progress!

Don't give up hope. Don't even set your expectations

low.

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]

,

that's great to hear. It's so nice to hear the specifics of our

kids successes. Since started the Paxil he's been much more social,

with less anxiety around other kids. He actually goes off by himself at the

park without stressing out and needing my help every 5 minutes.Before, he'd

be done at the park in 15 minutes- now he wants to stay for hours. He's

also making up for lost time in terrible 2's-- getting into everything,

saying " no " all day long, doing exactly what he's not supposed to and then

making sure I see him doing it and thinking it's really funny. The other

morning he came downstairs before me and he decided to cook eggs for our 2

dogs- he got a frying pan and cracked all our eggs into it, then fed it to

and Zeek with a spoon. Needless to say, the dogs were quite pleased.

He never did anything like this before the Paxil-- it's like it never

occured to him to get into stuff and explore. I almost think that by

reducing his general anxiety level, he now is comfortable feeling

independent and separating from me through rebelious behavior. I never

thought I'd be so happy to fish washcloths out of the toilet and listen to

" No, mom, me do it " all day long, but I'm just so tickled every time we have

" terrible two " moments because it's NORMAL!! Now I know why my friend's NT

children drive them to drink, LOL . It's so funny,, I was so worried about

the Paxil and it's actually helping a lot. It's slow and subtle, but

definitely there.

Becky

Re: Re:Yelling/HowLong?????

> Just wanted to mention that my son (on the protocol

> since January) is now in typical preschool. He is in

> the 3 year old class this year even though he turned 4

> in August, since I thought they would be much more

> tolerant of him and his lack of social skills than his

> age group would be, and still provide good examples.

> He has been there 6 weeks, and at first he did not

> even look at the other kids, although he would talk

> fine to the teachers (he has no more speech delays

> since he dropped his echolalia back in November after

> 3 days on Diflucan). A couple of days ago, I found

> out he has a couple of boys that he will sit and cut

> up with, laugh with, be silly, imitate, etc. And the

> day I learned this, we went to a Mc's

> playground, where a 5 yr old boy was playing, and he

> went up to him, smiled, started copying him. The boy

> said " Hey! You wanna play chase? Cops and Robbers?

> Get me! " and took off running. Garrett laughed, and

> ran after him. They played that way at least half an

> hour.

> My mind was blown. At the rate he was going, I felt I

> had at least 2 years before I needed to start

> expecting him to interact particularly well socially

> (I was giving myself lots of time before I wanted to

> allow myself to panic). This, in 6 weeks?!!, was far

> better than I even dared to hope. This is even while

> he is " off " , looking spacey sometimes, yelling and

> rebelling against everything, etc. If he did that

> well while his issues are still not worked out, well

> all I can say is Wow. It has not even been a year

> since all he could do was repeat what I said, did not

> approach me to ask for something - just started saying

> " Want milk? want milk? " in the middle of his

> repetitive play, scripting, incapable of answering any

> question, even yes or nos. Come November it will be

> one year since that. Talk about progress!

> Don't give up hope. Don't even set your expectations

> low.

>

--- golivo <golivo@...> wrote:

> > Dear Lori,

> > THANK YOU! You have really made may day:) Our son

> > is 5 years old now and in Developmental

> > Kindergarten. >>>>

//message thread truncated//

_________________________________

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]

Hey Becky -

That makes me look forward to Paxil! Dr. G isn't

in a big hurry to use it, due to him just being 4 and

a month old, but due to the unavailability of

Kutapressin, and knowing there are still some issues

to be worked out, he said he'd like to consider it. I

asked to wait just a little longer and try antibiotics

on him before taking that last step, as we have seen

huge gains on antibiotics before (Cefzil more so than

Erythromycin). He thought that was a great idea, so I

imagine it will be another 3 months before we start

the Paxil. I don't really feel pressured to hurry - I

guess I'm getting a little complacent or content with

our current progress, despite some problems. I could

not have imagined being this calm and patient 9 months

ago!

I'm just nervous about the SSRIs because a few

years ago BC, after 2 weeks on Paxil (for TMJ, not

even depression) I almost decided to wrap my car

around a tree one day - realized something was bad

wrong with that thought just in time. The increased

risk for suicide isn't just for teens, in my

experience. Also, someone here said Paxil is

contraindicated for Bipolar, and I'm possibly very

borderline Bipolar II as well, so that likely had

something to do with it. I know a 4 yr old couldn't

do something like that, so that's not a particular

worry - I just wonder if somewhere along the way he

will be a little Bipolar like me. I'd really prefer a

neurospect (for us both, really) before trying SSRIs -

just don't know if that is going to be much of a

possibility. I may just have to try them without one,

and I find myself even WANTING to, despite all the

negatives that get discussed. I've been through a lot

of negatives down this road, so I'm not particularly

scared of them anymore, they don't crush me as bad

anymore, because I know that one week can be so

horrible, and then suddenly the most incredible things

start to happen. Something bad more often turns right

around to something great. All those things I worried

he'd never do just keep happening.

This morning, Garrett got up with an almost dry

diaper, then went into the bathroom, undressed, and

went all by himself!!! I was totally shocked. I want

to scream from the roof tops! I can't wait till my

mom wakes up so I can call her and tell her! Oh

gosh - I'm saving money on diapers too!

I'm so happy yours is progressing so well too! If

mine will just get a little more energy at the park, I

think he'd like it more too. I'd love to see him run

full speed one day. I'm pretty sure I will, too.

He's still in and out on energy levels, in and out on

interest and willingness to explore. It will

eventually stabilize as we work with it.

Here's to having hope! (Thanks so much, Dr G)

--- & Becky <beckeric@...> wrote:

> ,

>

> that's great to hear. It's so nice to hear

> the specifics of our

> kids successes. Since started the Paxil he's

> been much more social,

> with less anxiety around other kids. He actually

> goes off by himself at the

> park without stressing out and needing my help every

> 5 minutes.Before, he'd

> be done at the park in 15 minutes- now he wants to

> stay for hours. He's

> also making up for lost time in terrible 2's--

> getting into everything,

> saying " no " all day long, doing exactly what he's

> not supposed to and then

> making sure I see him doing it and thinking it's

> really funny. The other

> morning he came downstairs before me and he decided

> to cook eggs for our 2

> dogs- he got a frying pan and cracked all our eggs

> into it, then fed it to

> and Zeek with a spoon. Needless to say, the

> dogs were quite pleased.

>

> He never did anything like this before the Paxil--

> it's like it never

> occured to him to get into stuff and explore. I

> almost think that by

> reducing his general anxiety level, he now is

> comfortable feeling

> independent and separating from me through rebelious

> behavior. I never

> thought I'd be so happy to fish washcloths out of

> the toilet and listen to

> " No, mom, me do it " all day long, but I'm just so

> tickled every time we have

> " terrible two " moments because it's NORMAL!! Now I

> know why my friend's NT

> children drive them to drink, LOL . It's so funny,,

> I was so worried about

> the Paxil and it's actually helping a lot. It's slow

> and subtle, but

> definitely there.

>

> Becky

//message thread truncated//

_________________________________

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]

Its all about different SSRI's suit different people. - I think it was your

post - great news. For us Paxil and Celexa were both OK -- but we

couldn't push to the bigger dose - Prozac a big disaster - Zoloft seems a

better fit.

Re: Re:Yelling/HowLong?????

Hey Becky -

That makes me look forward to Paxil! Dr. G isn't

in a big hurry to use it, due to him just being 4 and

a month old, but due to the unavailability of

Kutapressin, and knowing there are still some issues

to be worked out, he said he'd like to consider it. I

asked to wait just a little longer and try antibiotics

on him before taking that last step, as we have seen

huge gains on antibiotics before (Cefzil more so than

Erythromycin). He thought that was a great idea, so I

imagine it will be another 3 months before we start

the Paxil. I don't really feel pressured to hurry - I

guess I'm getting a little complacent or content with

our current progress, despite some problems. I could

not have imagined being this calm and patient 9 months

ago!

I'm just nervous about the SSRIs because a few

years ago BC, after 2 weeks on Paxil (for TMJ, not

even depression) I almost decided to wrap my car

around a tree one day - realized something was bad

wrong with that thought just in time. The increased

risk for suicide isn't just for teens, in my

experience. Also, someone here said Paxil is

contraindicated for Bipolar, and I'm possibly very

borderline Bipolar II as well, so that likely had

something to do with it. I know a 4 yr old couldn't

do something like that, so that's not a particular

worry - I just wonder if somewhere along the way he

will be a little Bipolar like me. I'd really prefer a

neurospect (for us both, really) before trying SSRIs -

just don't know if that is going to be much of a

possibility. I may just have to try them without one,

and I find myself even WANTING to, despite all the

negatives that get discussed. I've been through a lot

of negatives down this road, so I'm not particularly

scared of them anymore, they don't crush me as bad

anymore, because I know that one week can be so

horrible, and then suddenly the most incredible things

start to happen. Something bad more often turns right

around to something great. All those things I worried

he'd never do just keep happening.

This morning, Garrett got up with an almost dry

diaper, then went into the bathroom, undressed, and

went all by himself!!! I was totally shocked. I want

to scream from the roof tops! I can't wait till my

mom wakes up so I can call her and tell her! Oh

gosh - I'm saving money on diapers too!

I'm so happy yours is progressing so well too! If

mine will just get a little more energy at the park, I

think he'd like it more too. I'd love to see him run

full speed one day. I'm pretty sure I will, too.

He's still in and out on energy levels, in and out on

interest and willingness to explore. It will

eventually stabilize as we work with it.

Here's to having hope! (Thanks so much, Dr G)

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.