Re: Amantadine update

[Guest guest]

,

How wonderful to hear the improvements! Who is your prescribing physician? I

asked our pediatric psychiatrist, she said we'd have to go to a neurologist to

get Amantadine.

Aliza

lisarosseisen wrote:

We started a 12 week trial of an anti-viral drug called Amantadine in

early August. I promised you all that I would send an update as we

went along:

We just finished our first 12 weeks and are starting another 12 week

round. The results I have seen were not miraculous but they were

very, very good. Within a couple of days, the boys were much calmer

and were no longer bouncing off the walls. Their focus at school has

been much more acute and they are doing very, very well in class (1st

grade, general ed class, no shadow). They are raising their hands

and answering questions in class, and they are often playing with

friends at recess, instead of just each other. They are even sharing

stories and drawings in front of the class. Their verbal stims have

decreased significantly but have not disappeared at home. Their

insistance on running through grocery stores has ceased and they now

stay right by my side. (We even took them shopping on the Strand in

Galveston and they never left my side). Their language usage has

increased and become more complex, as has their thought processes.

Their conversational language has increased, though it still centers

around their obsessions. They follow directions better and just seem

to be more " present " in the world around them. The only down sides I

have seen are that, my normally quiet son now seems a bit more

subdued at times, but not always. Possibly not related: my sons'

very self-limited diet expanded greatly during the summer, before

amantadine, but seems to be narrowing again, though one son is still

eating a few more " new " foods.

After the first 6 weeks, I took the boys off the amantadine for a few

days, to see if the improvements I was seeing was due to the drug or

greater maturity. A few days was all it took because they suddenly

were bouncing off the walls again, verbal stimming nonstop, not

following directions, not paying attention at school. I put them

back on amantadine and they were immediately better again.

The doctor says that they don't know how long the amantadine therapy

will last, because it is still in its infancy, but he expects that it

will be short term. That is why we are doing 12 weeks at a time.

All I know is that, when this 12 weeks is over, I will be lobbying to

keep them on it.

I also wanted to tell you of my friend's son's successes. One year

ago this 3 yr old little boy was completely non-verbal with a

moderate to severe autism diagnosis. He began valtrex and TD-DMPS

almost a year ago. He is now speaking in 4-5 word sentences. His

mom reports that he may be " upgraded " from moderate-severe autism to

aspberger's. He is doing very, very well.

Just wanted to pass this along!

in Cedar Park

'Don't be humble. You're not that great.'

--- Golda Meir

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[Guest guest]

We see Dr, , in Austin. He has recently expanded his protocol to include

Amantadine therapy.

in Austin

[Guest guest]

My son also sees Dr. . He has been taken off of Amantadine therapy

after 12 weeks. When I knew he would be taken off, I was afraid that he

would revert back, but since some of the main issues have been resolved,

when I took him off of the Amantadine, he didn't regress. He has still had

constant improvement. He still has a way to go, but the future looks so

much brighter.

Christy

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[Guest guest]

I'd love to hear more about what you've seen. Please email me directly if you

like.

Thanks,

Aliza

C Bush wrote:

My son also sees Dr. . He has been taken off of Amantadine

therapy

after 12 weeks. When I knew he would be taken off, I was afraid that he

would revert back, but since some of the main issues have been resolved,

when I took him off of the Amantadine, he didn't regress. He has still had

constant improvement. He still has a way to go, but the future looks so

much brighter.

Christy

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[Guest guest]

Hi, ,

Can I have Dr. 's phone number and address?

Thank you very much.

>

> We see Dr, , in Austin. He has recently expanded his protocol

to include Amantadine therapy.

>

> in Austin

>

>

[Guest guest]

Christy,

we just started our 2nd round of 12 weeks on Amantadine. I don't expect many of

the improvements the boys have made to disappear when we go off the amantadine

(I expect their language leaps to stay, after the amantadine goes away.)

However, this weekend we missed the Saturday night and Sunday morning doses, and

by Sunday afternoon, the boys were verbal stimming to beat the band, were a

whole lot more " active " , and not following directions well at all. This really

makes me anxious at the thought that Dr. will want to stop the

amantadine after this second 12 week round. We will have our next appointment

with him on Dec 6th (about week 5 in this round) and I am sure we will talk

about it then. I am glad to hear that you saw no regression after discontinuing

the amantadine. Perhaps my sons are just not ready to come off it yet, and may

be ready after week 24.

Did you see great improvements on the amantadine? I don't realize how far we

have come over the last 3 months until I miss some doses, like this weekend, and

I see those behaviors rear their ugly heads again. They had their Saturday

morning dose and we took them to the Indian PowWow that afternoon. There were

several long rows of vendor tents set up and large crowds of people everywhere.

Those boys stayed right by our sides the entire time. I did not have to hold

their hands or hang on to them at all and I never had to scold them for

wandering off. This, in itself, is a MAJOR improvement. When I returned to the

car with the boys, one of them sat and rattled away, talking to me non-stop for

about 15 minutes. The conversation did not revolve around his current

obsessions, and he was asking me a lot of pertinent questions. Another MAJOR

improvement. Even though the boys missed their Saturday evening and Sunday

morning doses, their language usage Sunday afternoon was phenomenal. We had a

lot of WOW! moments this weekend.

God is good. All the time.

in Cedar Park

[Guest guest]

What is the reason for taking the boys off the drug? Is the drug very

liver-toxic, or does it have other serious side-effects?

Thanks for sharing--

[Guest guest]

,

My son did have improvements on the Amantadine. He has seen Dr. for

over a year. His next appointment is on Mon. He is still undergoing

chelation, Chelex, and takes a half tablet of Valtrex everyday. He also

takes Metanx. He still has some problems that will need to be addressed,

but his speech and comprehension have made continuing leaps forward. He

still gets overwhelmed in crowded situations. I'll be talking to the doctor

about that. He still needs to be reminded to stay with us, but he does look

back to make sure he can still see us in a group. Before, he would have

just gone on without a thought. I didn't see any regression after stopping

the Amantadine. However, my son's biggest problems occur when he hasn't

slept well or when he has allergy problems. If he feels well and has slept

well, he is such a joy. His sense of humor is starting to really develop.

That's so fun to watch. What other things has Dr. prescribed that

you've found to be beneficial?

Thanks,

Christy in Burleson

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[Guest guest]

Rosseisen:

I would like to make contact with you privately. Please email me at

mike.bernoski@... Thanks!

Regards,

Mike Bernoski

*** The future belongs to those who believe

*** in the beauty of their dreams...

________________________________

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of

Rosseisen

Sent: Monday, November 06, 2006 3:18 PM

To: Texas-Autism-Advocacy

Subject: Re: Amantadine update

Christy,

we just started our 2nd round of 12 weeks on Amantadine. I don't expect

many of the improvements the boys have made to disappear when we go off

the amantadine (I expect their language leaps to stay, after the

amantadine goes away.) However, this weekend we missed the Saturday

night and Sunday morning doses, and by Sunday afternoon, the boys were

verbal stimming to beat the band, were a whole lot more " active " , and

not following directions well at all. This really makes me anxious at

the thought that Dr. will want to stop the amantadine after this

second 12 week round. We will have our next appointment with him on Dec

6th (about week 5 in this round) and I am sure we will talk about it

then. I am glad to hear that you saw no regression after discontinuing

the amantadine. Perhaps my sons are just not ready to come off it yet,

and may be ready after week 24.

Did you see great improvements on the amantadine? I don't realize how

far we have come over the last 3 months until I miss some doses, like

this weekend, and I see those behaviors rear their ugly heads again.

They had their Saturday morning dose and we took them to the Indian

PowWow that afternoon. There were several long rows of vendor tents set

up and large crowds of people everywhere. Those boys stayed right by our

sides the entire time. I did not have to hold their hands or hang on to

them at all and I never had to scold them for wandering off. This, in

itself, is a MAJOR improvement. When I returned to the car with the

boys, one of them sat and rattled away, talking to me non-stop for about

15 minutes. The conversation did not revolve around his current

obsessions, and he was asking me a lot of pertinent questions. Another

MAJOR improvement. Even though the boys missed their Saturday evening

and Sunday morning doses, their language usage Sunday afternoon was

phenomenal. We had a lot of WOW! moments this weekend.

God is good. All the time.

in Cedar Park

[Guest guest]

Christy,

We have been with Dr. for 2 yrs. We are also chelating (TD-DMPS), take

metanx, and 1/2 valtrex daily. We have seen great results with these. I also

give my sons Gaba (for anxiety - loud noises), Taurine (helps stimulate

language), Acetyl-L-Carnitine (helps the brain), Cod Liver Oil, & probiotic. My

sons have also been GFCF for 2 years. I also give 1 mg melatonin at night to

help them sleep.

We have seen continual, amazing progress in the boys since starting Dr.

's protocol 2 yrs ago. We still have a ways to go but our main issues

are now centered around social skills, obsessions, and phobias.

I told you the other day that my sons verbal stims returned when we missed 2

doses of amantadine. We have been back on it since Sunday evening, and the

verbal stims are still high. I think the problem may actually be yeast, as we

also see this behavior when his yeast levels are too high.

Thanks for sharing your experience!

in Austin