Re: Your Opinion?

[Guest guest]

5. Add N-acetyl-cysteine. Start at 500mg 2x/day and work to 1000 mg. 2x/day

(I'm worried about this supplement .... what is it needed for? Shouldn't we

test first to see if this is required? I'm finally getting some good

behavior from him with controlling yeast and using neurofeedback ... won't

this potentially throw a monkey wrench into the equation?? If so, what test

should we take and who can do the test to see if this is really needed??)

Hi M

My understanding is that N acetyl cysteine is one of the amino acids

necessary for the production of metallothianine. Metallothianine is often

deficient in ASD kids - it is a compound vital for many body cycles

particularly neural pruning (which neurofeedback helps do as well) and

getting rid of heavy metals. It was a useful supplement for my son.

Good luck

:-)

[Guest guest]

In a message dated 09/02/2010 16:57:33 GMT Standard Time,

thorenstd124@... writes:

Please reply with your opinion on any of these

>>Sounds cookie cutter, does the same thing for everybody, what reason was

given for reducing the Vit D?

NAC - well people who need it do well the other 50% who don't do very badly

though sometimes not for a week or two, you can test but a trial is often

better. How does your child do on sulphury foods? That could give you a

clue

Have you ever used OTC gut bug killers? Diff and Flagyl can sort things out

very quickly and then.......a week later it all comes back, you need

effective OTC stuff in place or its basically a waste of time.

I don't 'do' DAN doctors, the two most successful treatments for my son

have been coming off GFCF diet with Houston Enzymes and chelation on the

Cutler protocol, neither of which would any DAN recommend

JMHO

Mandi in UK

[Guest guest]

I do not believe in doing MB12 unless you have been tested,and been found to

have megaloblastic anemia and/or MTHFR mutations.DAN!s who forge ahead with this

stuff without the proper testing,just contribute to the myth that those with an

" autism " diagnosis don't need this stuff.

 

________________________________

From: mcdmcd888 <margaret.d888@...>

Sent: Tue, February 9, 2010 12:08:34 AM

Subject: Your Opinion?

 

Saw a DAN! doc for the first time for DS, age 13, recently.

DS is mainly mild Aspie-ish, OCD was obvious when age 7-9, has had gut issues

for most of life since stopped breastfeeding, enzymes have been extremely

helpful. I have provided his history before, so won't repeat here unless you

want it.

The DAN! has advised this as a starting point with NO TESTS having been

performed:

1. continue Enzymatic's DigestGold, continue Calcium & Magnesium, continue

Biotin 1000 mcg/day

2. Add DIFLUCAN and FLAGYL (gave us a script for them)

3. Add Kirkman Pro BioGold probiotic 1 cap/day (we were taking Enzymatic's brand

of Pro Bio ... so ??)

4. Omega-3 with DHA + EPA adding to 1000mg/day apx. (he was taking 1 Coromega a

day, so I can up it to 2/day)

5. Add N-acetyl-cysteine. Start at 500mg 2x/day and work to 1000 mg. 2x/day (I'm

worried about this supplement .... what is it needed for? Shouldn't we test

first to see if this is required? I'm finally getting some good behavior from

him with controlling yeast and using neurofeedback ... won't this potentially

throw a monkey wrench into the equation?? If so, what test should we take and

who can do the test to see if this is really needed??)

6. Add Methyl B12. He wanted to do shots of 25mg/ML per day, but I knew that

ds's father would never comply. So, DAN! backed off to oral methyl B12 (Kirkman)

2500 mcg/day

7. Continue Vitamin D3 but reduce from 5K iu's/day to 1K iu/day (I disagree

based on recent reports from the Vitamin D Council. I will have his 25 OH(D)

level tested, but the Vitamin D Council suggests that ASD patients need to have

their activated Vit D3 levels higher than normal to function).

Please reply with your opinion on any of these. In particular, I am concerned

about item#5 and possibly item#6. I already have item#2 (prescriptions) in hand

and am wondering if I can administer them now without #3, #5 and #6 or not. I am

thinking that I would need #3 to accompany, but that the others can be entered

into the equation later IF they are deemed " needed " based on testing results.

I really do not want to go backwards in behavior. So, advice sorely needed.

Thanks,

M

[Guest guest]

I'm not a big fan of supplementation without testing.

Possible problems I see: #2 - a prescription yeast killer without evidence of

yeast? wtf? My son has major gut problems, but no yeast. Treating for

non-existant yeast could throw off the balance and really give him bacteria

problems.

#6 - b12 for methylation is fine if the boy is the sort that under methylates.

But some kids *over*methylate, and without proper testing, or gently testing

with, say DMG, you run the risk of HYPER kid. Mine goes berserk on the smallest

dose of DMG.

----- Receiving the following content -----

From: mcdmcd888

Receiver:

Time: 2010-02-08, 23:08:34

Subject: Your Opinion?

>Saw a DAN! doc for the first time for DS, age 13, recently.

>

>DS is mainly mild Aspie-ish, OCD was obvious when age 7-9, has had gut issues

for most of life since stopped breastfeeding, enzymes have been extremely

helpful. I have provided his history before, so won't repeat here unless you

want it.

>

>The DAN! has advised this as a starting point with NO TESTS having been

performed:

>1. continue Enzymatic's DigestGold, continue Calcium & Magnesium, continue

Biotin 1000 mcg/day

>2. Add DIFLUCAN and FLAGYL (gave us a script for them)

>3. Add Kirkman Pro BioGold probiotic 1 cap/day (we were taking Enzymatic's

brand of Pro Bio ... so ??)

>4. Omega-3 with DHA + EPA adding to 1000mg/day apx. (he was taking 1

Coromega a day, so I can up it to 2/day)

>5. Add N-acetyl-cysteine. Start at 500mg 2x/day and work to 1000 mg. 2x/day

(I'm worried about this supplement .... what is it needed for? Shouldn't we test

first to see if this is required? I'm finally getting some good behavior from

him with controlling yeast and using neurofeedback ... won't this potentially

throw a monkey wrench into the equation?? If so, what test should we take and

who can do the test to see if this is really needed??)

>6. Add Methyl B12. He wanted to do shots of 25mg/ML per day, but I knew that

ds's father would never comply. So, DAN! backed off to oral methyl B12 (Kirkman)

2500 mcg/day

>7. Continue Vitamin D3 but reduce from 5K iu's/day to 1K iu/day (I disagree

based on recent reports from the Vitamin D Council. I will have his 25 OH(D)

level tested, but the Vitamin D Council suggests that ASD patients need to have

their activated Vit D3 levels higher than normal to function).

>

>Please reply with your opinion on any of these. In particular, I am concerned

about item#5 and possibly item#6. I already have item#2 (prescriptions) in hand

and am wondering if I can administer them now without #3, #5 and #6 or not. I am

thinking that I would need #3 to accompany, but that the others can be entered

into the equation later IF they are deemed " needed " based on testing results.

>

>I really do not want to go backwards in behavior. So, advice sorely needed.

>

>Thanks,

>M

>

>

>

>------------------------------------

>

>

[Guest guest]

Also if you have the MTHFR mutations you can't take too much MB12 at once.

 

________________________________

From: West <shanwest@...>

< >

Sent: Tue, February 9, 2010 12:24:43 PM

Subject: Re: Your Opinion?

 

I'm not a big fan of supplementation without testing.

Possible problems I see: #2 - a prescription yeast killer without evidence of

yeast? wtf? My son has major gut problems, but no yeast. Treating for

non-existant yeast could throw off the balance and really give him bacteria

problems.

#6 - b12 for methylation is fine if the boy is the sort that under methylates.

But some kids *over*methylate, and without proper testing, or gently testing

with, say DMG, you run the risk of HYPER kid. Mine goes berserk on the smallest

dose of DMG.

----- Receiving the following content -----

From: mcdmcd888

Receiver:

Time: 2010-02-08, 23:08:34

Subject: Your Opinion?

>Saw a DAN! doc for the first time for DS, age 13, recently.

>

>DS is mainly mild Aspie-ish, OCD was obvious when age 7-9, has had gut issues

for most of life since stopped breastfeeding, enzymes have been extremely

helpful. I have provided his history before, so won't repeat here unless you

want it.

>

>The DAN! has advised this as a starting point with NO TESTS having been

performed:

>1. continue Enzymatic's DigestGold, continue Calcium & Magnesium, continue

Biotin 1000 mcg/day

>2. Add DIFLUCAN and FLAGYL (gave us a script for them)

>3. Add Kirkman Pro BioGold probiotic 1 cap/day (we were taking Enzymatic's

brand of Pro Bio ... so ??)

>4. Omega-3 with DHA + EPA adding to 1000mg/day apx. (he was taking 1 Coromega a

day, so I can up it to 2/day)

>5. Add N-acetyl-cysteine. Start at 500mg 2x/day and work to 1000 mg. 2x/day

(I'm worried about this supplement .... what is it needed for? Shouldn't we test

first to see if this is required? I'm finally getting some good behavior from

him with controlling yeast and using neurofeedback ... won't this potentially

throw a monkey wrench into the equation?? If so, what test should we take and

who can do the test to see if this is really needed??)

>6. Add Methyl B12. He wanted to do shots of 25mg/ML per day, but I knew that

ds's father would never comply. So, DAN! backed off to oral methyl B12 (Kirkman)

2500 mcg/day

>7. Continue Vitamin D3 but reduce from 5K iu's/day to 1K iu/day (I disagree

based on recent reports from the Vitamin D Council. I will have his 25 OH(D)

level tested, but the Vitamin D Council suggests that ASD patients need to have

their activated Vit D3 levels higher than normal to function).

>

>Please reply with your opinion on any of these. In particular, I am concerned

about item#5 and possibly item#6. I already have item#2 (prescriptions) in hand

and am wondering if I can administer them now without #3, #5 and #6 or not. I am

thinking that I would need #3 to accompany, but that the others can be entered

into the equation later IF they are deemed " needed " based on testing results.

>

>I really do not want to go backwards in behavior. So, advice sorely needed.

>

>Thanks,

>M

>

>

>

>----------- --------- --------- -------

>

>

[Guest guest]

Why is that?

>

> Also if you have the MTHFR mutations you can't take too much MB12 at once.

>

>

>  

>

>

>

>

>

> ________________________________

> From: West <shanwest@...>

> < >

> Sent: Tue, February 9, 2010 12:24:43 PM

> Subject: Re: Your Opinion?

>

>  

> I'm not a big fan of supplementation without testing.

>

> Possible problems I see: #2 - a prescription yeast killer without evidence of

yeast? wtf? My son has major gut problems, but no yeast. Treating for

non-existant yeast could throw off the balance and really give him bacteria

problems.

> #6 - b12 for methylation is fine if the boy is the sort that under methylates.

But some kids *over*methylate, and without proper testing, or gently testing

with, say DMG, you run the risk of HYPER kid. Mine goes berserk on the smallest

dose of DMG.

>

>

>

> ----- Receiving the following content -----

> From: mcdmcd888

> Receiver:

> Time: 2010-02-08, 23:08:34

> Subject: Your Opinion?

>

> >Saw a DAN! doc for the first time for DS, age 13, recently.

> >

> >DS is mainly mild Aspie-ish, OCD was obvious when age 7-9, has had gut issues

for most of life since stopped breastfeeding, enzymes have been extremely

helpful. I have provided his history before, so won't repeat here unless you

want it.

> >

> >The DAN! has advised this as a starting point with NO TESTS having been

performed:

> >1. continue Enzymatic's DigestGold, continue Calcium & Magnesium, continue

Biotin 1000 mcg/day

> >2. Add DIFLUCAN and FLAGYL (gave us a script for them)

> >3. Add Kirkman Pro BioGold probiotic 1 cap/day (we were taking Enzymatic's

brand of Pro Bio ... so ??)

> >4. Omega-3 with DHA + EPA adding to 1000mg/day apx. (he was taking 1 Coromega

a day, so I can up it to 2/day)

> >5. Add N-acetyl-cysteine. Start at 500mg 2x/day and work to 1000 mg. 2x/day

(I'm worried about this supplement .... what is it needed for? Shouldn't we test

first to see if this is required? I'm finally getting some good behavior from

him with controlling yeast and using neurofeedback ... won't this potentially

throw a monkey wrench into the equation?? If so, what test should we take and

who can do the test to see if this is really needed??)

> >6. Add Methyl B12. He wanted to do shots of 25mg/ML per day, but I knew that

ds's father would never comply. So, DAN! backed off to oral methyl B12 (Kirkman)

2500 mcg/day

> >7. Continue Vitamin D3 but reduce from 5K iu's/day to 1K iu/day (I disagree

based on recent reports from the Vitamin D Council. I will have his 25 OH(D)

level tested, but the Vitamin D Council suggests that ASD patients need to have

their activated Vit D3 levels higher than normal to function).

> >

> >Please reply with your opinion on any of these. In particular, I am concerned

about item#5 and possibly item#6. I already have item#2 (prescriptions) in hand

and am wondering if I can administer them now without #3, #5 and #6 or not. I am

thinking that I would need #3 to accompany, but that the others can be entered

into the equation later IF they are deemed " needed " based on testing results.

> >

> >I really do not want to go backwards in behavior. So, advice sorely needed.

> >

> >Thanks,

> >M

> >

> >

> >

> >----------- --------- --------- -------

> >

> >

[Guest guest]

Keeping in mind that my daughter is very sensitive, this is my experience:

#5 NAC: If child is high cysteine, this will cause problems. Due to doctor's

urging we experimented on low dose and ititially no problems but after about 4

days behavior began to deteriorate and continued to do so until we stopped the

NAC.

#6 Mb12: Needed by our kids but many have problems tolerating. We are

currently trying transdermal,and even at very low dose we need to lower even

more. It is known to cause aggressive behaviors in some.

#2 Diflucon: Many on this site prefer the nonprescription antifungals like

caprylic acid, grapefruit seed extract, etc.

>

> Saw a DAN! doc for the first time for DS, age 13, recently.

>

> DS is mainly mild Aspie-ish, OCD was obvious when age 7-9, has had gut issues

for most of life since stopped breastfeeding, enzymes have been extremely

helpful. I have provided his history before, so won't repeat here unless you

want it.

>

> The DAN! has advised this as a starting point with NO TESTS having been

performed:

> 1. continue Enzymatic's DigestGold, continue Calcium & Magnesium, continue

Biotin 1000 mcg/day

> 2. Add DIFLUCAN and FLAGYL (gave us a script for them)

> 3. Add Kirkman Pro BioGold probiotic 1 cap/day (we were taking Enzymatic's

brand of Pro Bio ... so ??)

> 4. Omega-3 with DHA + EPA adding to 1000mg/day apx. (he was taking 1

Coromega a day, so I can up it to 2/day)

> 5. Add N-acetyl-cysteine. Start at 500mg 2x/day and work to 1000 mg. 2x/day

(I'm worried about this supplement .... what is it needed for? Shouldn't we test

first to see if this is required? I'm finally getting some good behavior from

him with controlling yeast and using neurofeedback ... won't this potentially

throw a monkey wrench into the equation?? If so, what test should we take and

who can do the test to see if this is really needed??)

> 6. Add Methyl B12. He wanted to do shots of 25mg/ML per day, but I knew that

ds's father would never comply. So, DAN! backed off to oral methyl B12 (Kirkman)

2500 mcg/day

> 7. Continue Vitamin D3 but reduce from 5K iu's/day to 1K iu/day (I disagree

based on recent reports from the Vitamin D Council. I will have his 25 OH(D)

level tested, but the Vitamin D Council suggests that ASD patients need to have

their activated Vit D3 levels higher than normal to function).

>

> Please reply with your opinion on any of these. In particular, I am concerned

about item#5 and possibly item#6. I already have item#2 (prescriptions) in hand

and am wondering if I can administer them now without #3, #5 and #6 or not. I am

thinking that I would need #3 to accompany, but that the others can be entered

into the equation later IF they are deemed " needed " based on testing results.

>

> I really do not want to go backwards in behavior. So, advice sorely needed.

>

> Thanks,

> M

>

[Guest guest]

Is this just temporary until testing is done?

Hold off on NAC. You need to know whether this one is needed before doing it,

especially if OCD is present (someone else already explained about cysteine).

The problem that you are describing is all about gut- so the DIflucan and Flagyl

make sense if you are not going to do diet, but diet is far better at healing

the gut and much safer. GF/CF/SF is just the tip of the iceberg for diet, so

how well your kid does on that has nothing to do with whether they are a " diet "

kid. Once you learn about the various ins and outs of diet, you learn that

almost everything that DAN!s do can be accomplished through diet. There are

hundreds of species of " bugs " in the gut, so prescription methods such as these

may help but can't really fix the overall imbalance. BTW, there are a lot of

myths about what needs to be present for someone to have yeast- people can have

totally normal BMs and still have yeast. If there are gut problems present then

there is dysbiosis.

I would do the mB12. Keep in mind that most of these things will bring on a

" die-off " or detox reaction, so a " bad " reaction is often a sign that it is

actually working- but it helps to know more about what each things is supposed

to do so that you can evaluate whether it is a " good bad " or " bad bad " reaction.

Kids who need methylation support such as mB12 or DMG usually get hyper on it,

at least at first. This most often means that the body needs another nutrient

to support the process, such as magnesium. You need to know what is going on

when you do these things. 's book " Nourishing Hope for Autism " is

a great place to start- it give a thorough explanation of what these biochemical

processes are all about.

Also remember that each of these supplements is involved in many, often

hundreds, of different reactions and pathways in the body. Sometimes mB12 is

about methylation, but it also important for viral control. A bad reaction

could be viral die-off (and yeast flare) rahter than about methylation. My

advice would be either get a DAN! who you really trust to do what he/she says,

and who will explain " why " they want you to do things, or learn it all yourself.

It can be done.

-Sierra

>

> Keeping in mind that my daughter is very sensitive, this is my experience:

> #5 NAC: If child is high cysteine, this will cause problems. Due to doctor's

urging we experimented on low dose and ititially no problems but after about 4

days behavior began to deteriorate and continued to do so until we stopped the

NAC.

> #6 Mb12: Needed by our kids but many have problems tolerating. We are

> currently trying transdermal,and even at very low dose we need to lower even

more. It is known to cause aggressive behaviors in some.

> #2 Diflucon: Many on this site prefer the nonprescription antifungals like

caprylic acid, grapefruit seed extract, etc.

>

[Guest guest]

Sorry I am late in replying to all of you; I have been very busy.

I REALLY appreciate all of your opinions on this. I have decided to hold off on

giving my son anything new. I'm just sticking with what has worked for him for

the month of January and turned his crappy disposition into one nearing

happy-go-lucky and joyful (until last Sunday when the devil returned ... which

is because we ran out of some supplements a few days earlier and he forgot to

take his daily Culturelle). Doh.

Neurofeedback is only 1/3rd of the pie. Bad chemicals wash the brain into a

frenzy. Neurofeedback is only good if the brain is reasonably balanced.

I figure he had a yeast explosion and I am tripling and quadrupling my efforts

there to get him back on track. After overdosing on probiotics, Biotin, GSE, ...

for 48 hours ... he's 80% better.

I am going to re-study your messages and replies to my original request for your

opinion and get back to you with questions. One thing for sure is that I want

testing and I don't want to cause behavior without PROOF that the child HAS the

condition (of whatever ... be it heavy metal toxicity .... or MTHFR ... or viral

blah blah blah). I'm willing to cause behavior for a while for the later greater

good ... but only if I am positive that he HAS a specific problem to treat!

Don't like the willy-nilly approach of guessing so much anymore, esp. if it's

going to be a pain for all involved. I have an ex who would love to pin a label

on me and gain custody of both kids, so I'm not as free as the rest of you to

move forward without substantial evidence of such a need to go down a certain

path.

Cheers,

M

> >

> > Keeping in mind that my daughter is very sensitive, this is my experience:

> > #5 NAC: If child is high cysteine, this will cause problems. Due to

doctor's urging we experimented on low dose and ititially no problems but after

about 4 days behavior began to deteriorate and continued to do so until we

stopped the NAC.

> > #6 Mb12: Needed by our kids but many have problems tolerating. We are

> > currently trying transdermal,and even at very low dose we need to lower even

more. It is known to cause aggressive behaviors in some.

> > #2 Diflucon: Many on this site prefer the nonprescription antifungals like

caprylic acid, grapefruit seed extract, etc.

> >

>