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Re: HELP - 8 YEAR OLD - ANY HOPE?

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DD, it's pretty hard to comment on this until we get some very

specific information on exactly which supplements, interventions,

and protocols you followed, and what the result of each was. It's

common for people to come to this list with stories of regression

under a doctor's care, only to find that the doctor's protocols for

supplementation/chelation/etc. were actually very risky, or wrong

for the child in some way.

If you can provide more specific information, I am sure you will get

some very useful feedback. A number of parents on this list have

recovered their kids, or are close to doing so - often with minimal

professional help.

best wishes

Rene

>

> Hello everyone, we stared biomedical intervention for our daughter

> when she was turning five. We did all the expensive testing, got

> helped by a Dan doctor, did supplements, diet, b12, chelation, etc

> etc etc, and ended up with a kid who regressed more on that year

than

> ever before.

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It would be helpful if you would give more information about the chelation.

Specifically, what chelator was used and how often you gave it.

[ ] HELP - 8 YEAR OLD - ANY HOPE?

Hello everyone, we stared biomedical intervention for our daughter

when she was turning five. We did all the expensive testing, got

helped by a Dan doctor, did supplements, diet, b12, chelation, etc

etc etc, and ended up with a kid who regressed more on that year than

ever before. My husband and I are terrified, but don't want to lose

hope. Per Dr's orders, we stopped everything to figure out what was

causing the regression... we still don't know. We live outside of

the US, and could continue with this protocol long-distance, even

though it would be very expensive for us... What I would like is to

hear whether this sounds familiar, and if there are any families out

there who have started biomedical intervention for kids who are 8+

and with positive results (also any families who haven't had positive

results)... we need help deciding whether to restart... or focus on

therapy. She has significant auditory processing, attention, and

recall issues... mostly she is verbal but has a very limited range of

interests (mostly only what gives her joy or pleasure) and doesn't

really care about what goes on around her. She has significant

visual processing deficits, and motor planning issues as well. Very

social with kids, but limited play skills. No conversation.

Any input would be greatly appreciated...

DD

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How many mercury amalgam dental fillings does she have? What did her hair

elements test show? What chelator, route, dose, and dosing schedule did you

use? Many DAN doctors use too high and infrequent dosing. Some prescribe

things which aren't actually chelators or have problematic ingredients.

There are people on this list who are chelating older individuals with

considerable success. Barb Romkema comes to mind, her son is in his 20s and in

college.

S S

<p>Hello everyone, we stared biomedical intervention for our

daughter <br>

when she was turning five. We did all the expensive testing, got <br>

helped by a Dan doctor, did supplements, diet, b12, chelation, etc <br>

etc etc, and ended up with a kid who regressed more on that year than <br>

ever before. My husband and I are terrified, but don't want to lose <br>

hope. Per Dr's orders, we stopped everything to figure out what was <br>

causing the regression..<wbr>. we still don't know. We live outside of <br>

the US, and could continue with this protocol long-distance, even <br>

though it would be very expensive for us... What I would like is to <br>

hear whether this sounds familiar, and if there are any families out <br>

there who have started biomedical intervention for kids who are 8+ <br>

and with positive results (also any families who haven't had positive <br>

results)... we need help deciding whether to restart... or focus on <br>

therapy. She has significant auditory processing, attention, and <br>

recall issues... mostly she is verbal but has a very limited range of <br>

interests (mostly only what gives her joy or pleasure) and doesn't <br>

really care about what goes on around her. She has significant <br>

visual processing deficits, and motor planning issues as well. Very <br>

social with kids, but limited play skills. No conversation. <br>

<br>

Any input would be greatly appreciated.<wbr>.. <br>

<br>

DD<br>

<br>

</p>

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Hello, I feel your pain, regret and your mistrust of the world. I

do wonder why you blame the biomedical treatments you did on her to

the regressing she did... she may of been much worse off today if

you had done nothing. I also stopped all biomedical treatment. When

I stopped my son was 8 - he was so out of it after several months

of no treatments I thought I was going to have to put him in an

institution. Now he is really back on track at 10 years old. Many

things come to me.... and I feel that there is hope for your

daughter - I think the road you need to be on is different than the

one you are on now- this is why you may be confused? I think you

need to do some study on Neurotransmitters- I have been reading

about Neurons for some time now- My sons does not have much control

at the beginning and the end of his digestion track, he can not

pucker to give me a kiss ( he will give me a kiss with flat lips)

I have also let go of having to understand everything - I have been

trying to trust my own inner feelings.

All I ask you is you answer your own question? And feel the Hope

of full recovery for your daughter- you feel it or you would have

not asked us other parents about it. Here is a starting place about

Neurons.

http://faculty.washington.edu/chudler/introb.html

My 2 cents Ann

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> Hello everyone, we stared biomedical intervention for our daughter

> when she was turning five. We did all the expensive testing, got

> helped by a Dan doctor, did supplements, diet, b12, chelation, etc

> etc etc, and ended up with a kid who regressed more on that year than

> ever before.

This sounds like my son at the beginning of biomedical.

>>She has significant auditory processing, attention, and

> recall issues... mostly she is verbal but has a very limited range of

> interests (mostly only what gives her joy or pleasure) and doesn't

> really care about what goes on around her. She has significant

> visual processing deficits, and motor planning issues as well. Very

> social with kids, but limited play skills. No conversation.

These were mostly viral for my son. Have you tried an anti-viral

protocol? I used vitamin A and C, Virastop enzyme, and olive leaf

extract.

Dana

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Someone here responded that you have not provided enough info -- I second that.

What supplements, chelators, protocals have you been following?

There are things that help the so called " tough nuts " like my son who did not

respond to anything (MB12, HBOT, chelation etc.). Consider the Yasko approach

and checking your child for high testosterone or the Stan Kurtz protocal.

There are soooo many kids who have and continue to climb the ladder.

Please don't give up on your child.

mamadd22 <mamadd22@...> wrote:

Hello everyone, we stared biomedical intervention for our daughter

when she was turning five. We did all the expensive testing, got

helped by a Dan doctor, did supplements, diet, b12, chelation, etc

etc etc, and ended up with a kid who regressed more on that year than

ever before. My husband and I are terrified, but don't want to lose

hope. Per Dr's orders, we stopped everything to figure out what was

causing the regression... we still don't know. We live outside of

the US, and could continue with this protocol long-distance, even

though it would be very expensive for us... What I would like is to

hear whether this sounds familiar, and if there are any families out

there who have started biomedical intervention for kids who are 8+

and with positive results (also any families who haven't had positive

results)... we need help deciding whether to restart... or focus on

therapy. She has significant auditory processing, attention, and

recall issues... mostly she is verbal but has a very limited range of

interests (mostly only what gives her joy or pleasure) and doesn't

really care about what goes on around her. She has significant

visual processing deficits, and motor planning issues as well. Very

social with kids, but limited play skills. No conversation.

Any input would be greatly appreciated...

DD

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I hope this isn't too dumb a question, but what are the signs or symptoms to

look for to know if your child has viral issues? I've asked a couple of my

DAN doctors if this is something we should test or pursue to see if my son

has any viral issues and they said there was no indication that was a problem

for him at this time.

He does have dilated pupils, began having seizures last year at 13 yrs old

and has a yeast problem that we are treating with Diflucan right now. I was

hoping to start chelation in a few weeks after his Diflucan. Does anyone have

any comments or suggestions as to treating for viral issues first or what to

look for?? (Any replies are much appreciated!!)

Carla

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<<< These were mostly viral for my son. Have you tried an anti-viral

<<< protocol? I used vitamin A and C, Virastop enzyme, and olive leaf

<<< extract.

<<< Dana

Hi Dana and others,

I am relatively new to biomedical. My son is 10 and I have had much success in 5

months of biomedical, so far only diet and supps, getting ready to do more. In 2

separate tests he has shown very elevated Igg HHV-6 (18 X ref range).

Could you tell me or refer me to anything on how to implement the anti-viral

protocol? He weighs 100 lb. I have vit. A and C at home and will order the

Virastop and Olive Leaf Ext., but how much and when/how to give them?

To the mom of the 8yo, I feel strongly that there is lots of hope, was

really to the " going in an institution " point. Thanks to everyone that writes

and helps us along.

millie

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Millie,

The good folks here have ways of doing anti-viral using virastop and mostly

natural agents. Another method gaining steam and which has produced results is

the Stan Kurtz protocal using Diflucan and Valtrex. You may want to join his

group: " mb12 valtrex " .

Anyway, below is the protocal written by Stan Kurtz:

How to get started

A simple strategy is to first decision about your antifungal strategy.

Personally I believe the safest, simplest and most effective agents for this is

using oral Diflucan, or Nizoral (and I sometimes mention amphotericin B). They

are very effective and they have a proven track record of safety to not be

relatively non-toxic. Others opt to try naturals and some have success with

products like Candex, or Caprilic Acid, Biotin, Grape Seed Extract (GSE) and a

growing list of things that I will put in my introduction letter I will

hopefully finish this weekend.

Personally, if I was just getting started today, based on my personal

philosophy of going what is most effective and not caring what the

administration was, meaning I don't mind using a medicine as long as it's one

that is science based, safe, proven, non-toxic, and effective, then I would

start with either Diflucan or Nizoral (or my third choice Amphotericin B).

Additionally, there is recent research that shows that these medicines are

helping a large set of our kids who have testosterone issues, and I won't get

into the details in this post, but normalizing testosterone seems to be a major

factor in lowering bacteria levels, raising glutathione levels and this activity

may be a very important element of a good portion of our children's recovery.

So bascially, IMO, you are safely covering two bases with one therapy.

If you are one of those folks who wants to go all natural, and don't mind the

risk that some of the naturals may not work as well for your child, then

exploring the list of naturals may make sense to you. I feel we will come up

with a list of naturals to use and figure out what works best for what child,

but right now it's a bit of a trial and error scenario, but an important one

because if we can figure it out it will save a lot of people money and headaches

in dealing with doctors... Rx's etc.

But, again... today if I was just getting started I would go with Diflucan or

Nizoral.

Next is the antiviral agent.

After a lot of thinking... today I believe the place to start if you can

afford it or have insurance is Valtrex. While we have seen gains with natural

agents, we do not have more than handful of possible recoveries from them yet.

Yes, we have a growing list of improvements, but comparatively I have 50 pages

of children who have greatly improved or recovered from the use of Valtrex. My

son being one of them. He continually improved on Valtrex and was off the

spectrum in a matter of months. He was on Valtrex for a total of 9 months and

has been free of any biomedical therapies for more than year now. And this was

a metals toxic child with physical and behavioral impairments, so he not only

recovered virally but he also detoxed and cleared his gut issues in a more

natural way, through antiviral therapy. In the last few months we've confirmed

that there is a metals dumping effect with Valtrex for at least some people, my

son was one, we have test results of before and

after on others.

We also know that Valtrex modulated adenosine. Many of our kids have high or

low adenosine levels and prior to Dr. Sid Baker publishing his study results

about acyclovir and adenosine, we didn't have another therapy for this. Valtrex

quickly converts into acyclovir, but the added values of Valtrex is that it is

less toxic, more bioavailable and it crosses the blood brain barrier, which is

where our kids often have inflammation, (according to the 's Hopkins study

that came out last year and also mentioned recently in Time Magazine).

Both Valtrex and the Naturals often result in what we call a

healing-regression, which is a period of time when the child is healing but

looks like they are regressing. It is similar to a die off effect, but at the

same time we believe there is metals detox going on as well as immune system and

metabolic restoration from the methylation changes and the lessening of the

viral load. There also seems to be an increase in fungus during antiviral

therapy and initially there is probably a kill off of this new fungus. The

process is often greatly lessened by having the antifungal in place prior to

starting the antiviral. This healing-regression typically lasts 20 to 40 days.

Some folks also report never see a regression and only see gains...

A SMALLER MINORITY of folks experience the regression for more than 40 days

and folks in that situation often go to a lower dosage, take a break and return

later, or possibly the best option move to another agent like Famvir or

Acyclovir which seem to work more slowly and then try Valtrex again after a

period of time. We've seen some nice posts from parents who worked through

really difficult cases with this strategy and I applaud them.

What you don't want to IMO, is try an agent like Famvir or Acyclovir first,

because you may trigger the virus to mutate or build a bit of resistance (this

is just my observation). Lastly, some of these folks who have had a healing

regression longer than 40 days might move off of Valtrex at that point, switch

to an Natural like OLE or Virastop for while and then move back to Valtrex (or

try both) if their child doesn't have a full recovery with the Natural (which I

have not seen a report of a recovery from a natural yet... although we've seen

nice improvements).

After the healing-regression and the typical gains we see thereafter, if you

see consistent gains that look like you are recovery bound, like in the case of

my son, I would not change anything. If you see gains and then a plateau, I

would consider ADDING a natural like OLE. Then if you continue to see gains I

would not change anything or I might try adding Virastop and seeing what

happens.

One you have this part of your viral strategy under control, the next step

would be to consider therapies that flush out Measles virus, which include a two

day High Dose Vitamin A trial, and then Lauricidin.

The group (and hopefully your good DAN! doc) will help you with the nuances of

each strategy, but I think this is a good framework to start with. I'm not a

doctor. I'm not a PhD. but I do have the unique perspective of having the

position of reading the thousands of posts and hundreds of trials from this

group, and also of having a recovered child.

Thank you for your question. It helped me clear up some of my thinking and

I'll use some of this post in my framework for a " How to get started " document.

Welcome, good luck, and keep us posted on your progress and questions.

All the best,

- Stan

Millie Krejci <moozy21@...> wrote:

<<< These were mostly viral for my son. Have you tried an anti-viral

<<< protocol? I used vitamin A and C, Virastop enzyme, and olive leaf

<<< extract.

<<< Dana

Hi Dana and others,

I am relatively new to biomedical. My son is 10 and I have had much success in 5

months of biomedical, so far only diet and supps, getting ready to do more. In 2

separate tests he has shown very elevated Igg HHV-6 (18 X ref range).

Could you tell me or refer me to anything on how to implement the anti-viral

protocol? He weighs 100 lb. I have vit. A and C at home and will order the

Virastop and Olive Leaf Ext., but how much and when/how to give them?

To the mom of the 8yo, I feel strongly that there is lots of hope, was

really to the " going in an institution " point. Thanks to everyone that writes

and helps us along.

millie

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Millie, if you look in the files section of this list, you will find a

very useful document on viral treatments by Anita Kugelstadt

(mysuperteach), one of our listmates.

Rene

>

> Could you tell me or refer me to anything on how to implement the

anti-viral protocol?

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Sometimes you will see no symptoms. Sometimes the autism itself is a symptom of

viral issues. There are tests for elevated viral titers but they are not always

accurate. Some folks say a symptom is dark patches under a persons eyes.

Lots of folks treat for viruses to help their child move up the ladder. Viral

issues is just one more area to treat during the marathon to recover these kids

from autism.

carla925@... wrote:

I hope this isn't too dumb a question, but what are the signs or

symptoms to

look for to know if your child has viral issues? I've asked a couple of my

DAN doctors if this is something we should test or pursue to see if my son

has any viral issues and they said there was no indication that was a problem

for him at this time.

He does have dilated pupils, began having seizures last year at 13 yrs old

and has a yeast problem that we are treating with Diflucan right now. I was

hoping to start chelation in a few weeks after his Diflucan. Does anyone have

any comments or suggestions as to treating for viral issues first or what to

look for?? (Any replies are much appreciated!!)

Carla

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> Could you tell me or refer me to anything on how to implement the

anti-viral protocol? He weighs 100 lb. I have vit. A and C at home and

will order the Virastop and Olive Leaf Ext., but how much and when/how

to give them?

Start with the A and C. You can work up the vitamin C to bowel

tolerance [it tends to cause diarrhea when you give too much].

I started my kids with 250mg OLE and 1 capsule Virastop. I worked up

to giving quite a bit, 3x per day. You need to give Virastop on an

empty stomach.

Viral " die off " tends to cause a lot of yeast, so be sure you have a

good yeast protocol. I used GSE plus No-Fenol or Candidase enzyme

with much success.

Dana

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Thanks to all who responded. Here is some more info on the

protocols. I also need to add that my kid presents with atypical

pdd/nos in the sense that she is extremely social and expressive,

but pdd in that she is social as long as it's how she wants it and

what she wants. Several doctors diagnosed her as severe language,

attention and SID, not Pdd. Nevertheless, her bloodwork was classic

metal toxicity. I can post it, if necessary. She was very low in

the fat soluble vitamins, very low in zinc, yeast was ambiguous. We

started with supplements (CLO, Vit E, Folinic, CoQ10, minerals, B

complex, etc, then the GFCF diet, then a yeast protocol (first

nystatin, then diflucan) with probiotics, then glutathione and NAC.

After about 6 months of this, we chelated for a while with DMSA (3

days on, 11 days off). Pulled a lot of lead so chelated with

Calcium EDTA. Pulled even more lead but her iron went down, and had

to stop chelation. Then while treating for iron, we kept seeing

increase in behaviors, emotional ups and downs, decrease in ability

to concentrate, decrease in working memory. Tried changing supps,

treating for yeast again, then finally medications because she was

doing so poorly. Then we stopped everything. We even stopped the

diet. She hasn't gotten worse, but she hasn't gotten better

either. We have restarted the vitamins slowly, and now the

minerals. We are at CLO, VitE, CoQ10, Folinic, Multimineral,

CalMag, and re-added a high dose EFA yesterday. She is still off the

diet, we never saw any changes with the diet by the way, even after

6 months of it.

I appreciate any input... thanks!!

DD

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What did the hair test show? Do you know what metals you're dealing with

besides lead. Please read the files for info as to why EDTA may not be the best

chelatore, particularly if there are other metals involved. When you were using

DMSA what route, dose, and dosing schedule were you using? I presume she has NO

mercury amalgam dental fillings?!

S S

<p>Thanks to all who responded. Here is some more info on the <br>

protocols. I also need to add that my kid presents with atypical <br>

pdd/nos in the sense that she is extremely social and expressive, <br>

but pdd in that she is social as long as it's how she wants it and <br>

what she wants. Several doctors diagnosed her as severe language, <br>

attention and SID, not Pdd. Nevertheless, her bloodwork was classic <br>

metal toxicity. I can post it, if necessary. She was very low in <br>

the fat soluble vitamins, very low in zinc, yeast was ambiguous. We <br>

started with supplements (CLO, Vit E, Folinic, CoQ10, minerals, B <br>

complex, etc, then the GFCF diet, then a yeast protocol (first <br>

nystatin, then diflucan) with probiotics, then glutathione and NAC. <br>

After about 6 months of this, we chelated for a while with DMSA (3 <br>

days on, 11 days off). Pulled a lot of lead so chelated with <br>

Calcium EDTA. Pulled even more lead but her iron went down, and had <br>

to stop chelation. Then while treating for iron, we kept seeing <br>

increase in behaviors, emotional ups and downs, decrease in ability <br>

to concentrate, decrease in working memory. Tried changing supps, <br>

treating for yeast again, then finally medications because she was <br>

doing so poorly. Then we stopped everything. We even stopped the <br>

diet. She hasn't gotten worse, but she hasn't gotten better <br>

either. We have restarted the vitamins slowly, and now the <br>

minerals. We are at CLO, VitE, CoQ10, Folinic, Multimineral, <br>

CalMag, and re-added a high dose EFA yesterday. She is still off the <br>

diet, we never saw any changes with the diet by the way, even after <br>

6 months of it.<br>

<br>

I appreciate any input... thanks!!<br>

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See questions in the text below....

>

> Thanks to all who responded. Here is some more info on the

> protocols. I also need to add that my kid presents with atypical

> pdd/nos in the sense that she is extremely social and expressive,

> but pdd in that she is social as long as it's how she wants it and

> what she wants. Several doctors diagnosed her as severe language,

> attention and SID, not Pdd. Nevertheless, her bloodwork was classic

> metal toxicity. I can post it, if necessary. She was very low in

> the fat soluble vitamins, very low in zinc, yeast was ambiguous. We

> started with supplements (CLO, Vit E, Folinic, CoQ10, minerals, B

> complex, etc, then the GFCF diet, then a yeast protocol (first

> nystatin, then diflucan) with probiotics,

then glutathione and NAC.

Was this oral glutathione and NAC, and what were the doses....

> After about 6 months of this, we chelated for a while with DMSA (3

> days on, 11 days off).

What was the dose of DMSA and how often were the doses taken....

Pulled a lot of lead so chelated with

> Calcium EDTA.

Was this IV or oral EDTA. How many treatments....

J

Pulled even more lead but her iron went down, and had

> to stop chelation. Then while treating for iron, we kept seeing

> increase in behaviors, emotional ups and downs, decrease in ability

> to concentrate, decrease in working memory. Tried changing supps,

> treating for yeast again, then finally medications because she was

> doing so poorly. Then we stopped everything. We even stopped the

> diet. She hasn't gotten worse, but she hasn't gotten better

> either. We have restarted the vitamins slowly, and now the

> minerals. We are at CLO, VitE, CoQ10, Folinic, Multimineral,

> CalMag, and re-added a high dose EFA yesterday. She is still off the

> diet, we never saw any changes with the diet by the way, even after

> 6 months of it.

>

> I appreciate any input... thanks!!

>

> DD

>

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> Thanks to all who responded. Here is some more info on the

> protocols. I also need to add that my kid presents with atypical

> pdd/nos in the sense that she is extremely social and expressive,

> but pdd in that she is social as long as it's how she wants it and

> what she wants. Several doctors diagnosed her as severe language,

> attention and SID, not Pdd.

My #3 was like that. He recovered with the same supplements as I used

for #2, who was classic Kanner's autism.

>>Then while treating for iron, we kept seeing

> increase in behaviors, emotional ups and downs, decrease in ability

> to concentrate, decrease in working memory.

My kids were iron toxic. Was it a full body iron panel that indicated

she was low iron?

Dana

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Dana, thank you so much for your replies, I wish I knew as much as you

do. I have to go back to the test results to answer your questions.

Do you want me to post the Iron test results here to see what the Doc

based his decisions on? Thanks,

DD

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> Dana, thank you so much for your replies, I wish I knew as much as you

> do. I have to go back to the test results to answer your questions.

> Do you want me to post the Iron test results here to see what the Doc

> based his decisions on? Thanks,

I am not really good at interpreting tests, but I know the full body

iron panel is recommended for mineral/iron issues.

But certainly post the test results here. There are lots of others

here who are good at interpreting tests, even tho I am not.

Dana

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