Re: I am lost- son going down hill. I NEED HELP,PLEASE!! long

January 25, 2007

Michele,

Do you think that the nystatin reaction could have been release of

many toxins from yeast breakdown[vs not tolerating the nystatin]?

Have you tried activated charcoal to see if that would soak up some

of the mess? It sure sounds like gut problem along with a BIG

headache that may be from toxins. My daughter reacts with seizures

to many things and the charcoal is a lifesaver for shortening the

duration of a seizure bout. She's adult size--I give 3-4 capsules at

a time. I also do that for what I call 'pre-seizure behavior', which

for her is irritable 8-9 on a 10 point scale; I say black, she says

white etc! Alka selzer gold[has to be the gold] is another one I use

for extreme irritability - about 1/2 tab in a couple ounces of water

or whatever I can get it down with; repeat in 30 minutes, if needed.

This remedy was suggested in " Is This Your Child? " by Doris Rapp who

describes what many of us are dealing with as 'an asthma attack in

the brain'!!FWIW, we had horrible reactions to gse - it did not

sound like any die off that anyone described, so I quit using it. A

fairly recent allergy workup helped sort that out as grapefruit

products came up high allergy. Since you got about the same reaction

from nystatin and gse I would venture that you are slamming some

yeast and not dealing with intolerance. Also for my daughter, the td-

dmps caused HUGE irritability; so much so that I did not continue

with it. Hang in there! That little one needs you,

>

> I am sooooooo lost right now, with my son! He is practically back

to

> where he was before diet, etc. I have slowly stopped things one at

a

> time, but no change....I don't know if it's yeast, intolerance to

> supps, food or WHAT! I am soooo frustrated right now, that I just

> don't know where to turn...I read these forums DAILY, & still don't

> feel like I have 1/2 a clue to what's going on. I am so afraid that

> everytime I start him on something it is going to harm him further,

> so at the FIRST sign of something negative, we stop it. I just

don't

> know how to know the difference in intolerance to die-off.

> DAN! tested- he has high, aluminum, lead, aresenic, antimony and

> absolutely NOTHING showed up on Mercury, however, we KNOW he had it

> given to him, on numerous times. He also didn't have ANY lithium

or B-

> 12. SO.... I got him liquid lithium from AMT pharmacy. I give him

B-

> 12 shots 2/week. He went WILD on folic acid drops, so I stopped

them

> after the second time, haven't given them since with the shots. He

is

> also deficient in 11 of his minerals...so I got " Minerals of LIFE "

> liquid to give him. DAN! prescribed TD-DMPS but I only used it 3

> times before AMT pharmacy told me NOT to give it...until we get his

> minerals UP. His Zinc on the test came back in the white...OK.

Copper

> was only a little in the over/green..ok. He seems not to do well

> while on Pro-biotics, with his belly/bm. He was taking NYSTATIN

(the

> only thing that his yeast came back reacting too...others were

> resistant) but he even went crazy, with red cheeks, licking

> EVERYTHING like he was an addict for over an hour after giving him

> his Nystatin. NEXT morning blister on the end of his tongue, so I

> posted, all responses were he seems not to tolerate this. This

> started after a month. That was last week. He still has RED cheeks

> EVERYDAY since. I know this sounds like phenol intolerance,

however,

> he has had NOTHING new- food or supps. His stimms are at an all

time

> high. Hands twirling, clapping, slapping, HIGH pitching squeeling

> (that is CONSTANT)and visual. These are constant, every day! Now he

> is slapping the back of his head-hard!!! Teacher keeps asking me

> about it, worst today than ever. He is also doing the hysterical

> laughing for no reason, this is Night & DAY. I did start GSE

several

> days ago. He has the little red bumps all over his bottom with

> it...just like from the nystatin so again I ask.... which is

> it..intolerance, or detox/die-off? He is also covering his ears a

> lot, being unsocial & loud sounds.

> He is 5 and still completely NON-VERBAL!

> He eats NOTHING still. We started this diet last March. No soy,

> casein, gluten and especially beef. He only eats, plain lays pot.

> chips, tostito chips, gorilla crunch cereal, Bacon-crispy

only,enjoy

> life rice krispy like bars & enjoy life snack/cereal very berry

bars.

> That is IT!!!! he wont touch anything else, no matter how hard I

try,

> hold out, etc....he WILL NOT EAT anything else, I know texture is

> mostly to blame!SOOOOOOOOO

> Other than DIET....Does anyone know what to suggest start next??

> He hasn't had a shot in a week or anything else except GSE. So we

are

> ready to start again, slowly. He has gotten aggressive now also.

> Trying to pinch, slap me when upset...he has always been very

passive-

> until sound harmonics....Anyway...

> I would love to know what has worked for everyone else...I am

> seriously in a loss right now..I am in a panic, watching him

regress

> like this....I want to talk with DAN! but $70/12 MINUTES on the

> phone. Hubby has been out of work a lot last month & we just CAN

NOT

> AFFORD that right now on top of everything else.

> Thanks for any help...I don't want to give up...but I don't know

what

> to do!!!!!!!!!

> Michele

> (DESPERATE in NC)

>

January 25, 2007

Hi Michele,

It is a bumpy road... don't give up.

Have you tried charcoal? What you described sounds like die off to

me. I would continue with GSE. How much did you give him? Start slow

1-2 drops twice a day. If the charcoal helps, it is die off. Give it

a couple of hours after the GSE but away from food.

> chips, tostito chips, gorilla crunch cereal, ...

> life rice krispy like bars & enjoy life snack/cereal very berry

bars.

these won't help his yeast.

Try to find a way to feed him meat, veggies and fruits.

Some people had success with veggies and fruits smoothies.

Good luck,

>

> I am sooooooo lost right now, with my son! He is practically back to

> where he was before diet, etc. I have slowly stopped things one at a

> time, but no change....I don't know if it's yeast, intolerance to

> supps, food or WHAT! I am soooo frustrated right now, that I just

> don't know where to turn...I read these forums DAILY, & still don't

> feel like I have 1/2 a clue to what's going on. I am so afraid that

> everytime I start him on something it is going to harm him further,

> so at the FIRST sign of something negative, we stop it. I just don't

> know how to know the difference in intolerance to die-off.

> DAN! tested- he has high, aluminum, lead, aresenic, antimony and

> absolutely NOTHING showed up on Mercury, however, we KNOW he had it

> given to him, on numerous times. He also didn't have ANY lithium or

B-

> 12. SO.... I got him liquid lithium from AMT pharmacy. I give him B-

> 12 shots 2/week. He went WILD on folic acid drops, so I stopped them

> after the second time, haven't given them since with the shots. He

is

> also deficient in 11 of his minerals...so I got " Minerals of LIFE "

> liquid to give him. DAN! prescribed TD-DMPS but I only used it 3

> times before AMT pharmacy told me NOT to give it...until we get his

> minerals UP. His Zinc on the test came back in the white...OK.

Copper

> was only a little in the over/green..ok. He seems not to do well

> while on Pro-biotics, with his belly/bm. He was taking NYSTATIN (the

> only thing that his yeast came back reacting too...others were

> resistant) but he even went crazy, with red cheeks, licking

> EVERYTHING like he was an addict for over an hour after giving him

> his Nystatin. NEXT morning blister on the end of his tongue, so I

> posted, all responses were he seems not to tolerate this. This

> started after a month. That was last week. He still has RED cheeks

> EVERYDAY since. I know this sounds like phenol intolerance, however,

> he has had NOTHING new- food or supps. His stimms are at an all time

> high. Hands twirling, clapping, slapping, HIGH pitching squeeling

> (that is CONSTANT)and visual. These are constant, every day! Now he

> is slapping the back of his head-hard!!! Teacher keeps asking me

> about it, worst today than ever. He is also doing the hysterical

> laughing for no reason, this is Night & DAY. I did start GSE several

> days ago. He has the little red bumps all over his bottom with

> it...just like from the nystatin so again I ask.... which is

> it..intolerance, or detox/die-off? He is also covering his ears a

> lot, being unsocial & loud sounds.

> He is 5 and still completely NON-VERBAL!

> He eats NOTHING still. We started this diet last March. No soy,

> casein, gluten and especially beef. He only eats, plain lays pot.

> chips, tostito chips, gorilla crunch cereal, Bacon-crispy only,enjoy

> life rice krispy like bars & enjoy life snack/cereal very berry

bars.

> That is IT!!!! he wont touch anything else, no matter how hard I

try,

> hold out, etc....he WILL NOT EAT anything else, I know texture is

> mostly to blame!SOOOOOOOOO

> Other than DIET....Does anyone know what to suggest start next??

> He hasn't had a shot in a week or anything else except GSE. So we

are

> ready to start again, slowly. He has gotten aggressive now also.

> Trying to pinch, slap me when upset...he has always been very

passive-

> until sound harmonics....Anyway...

> I would love to know what has worked for everyone else...I am

> seriously in a loss right now..I am in a panic, watching him regress

> like this....I want to talk with DAN! but $70/12 MINUTES on the

> phone. Hubby has been out of work a lot last month & we just CAN NOT

> AFFORD that right now on top of everything else.

> Thanks for any help...I don't want to give up...but I don't know

what

> to do!!!!!!!!!

> Michele

> (DESPERATE in NC)

>

January 25, 2007

I'm very sorry to hear how things are going Michele.

A lot of what you describe to me does sound like yeast and bad

bacterial overgrowth and bumps on the bum and crazy behaviour sound

like die-off. You've said that he is taking GSE but I don't think

you're able to use probiotics right now. That may be part of the

problem if you cannot replinish the good bacteria. Would you be able

to sneak in some kefir? I realize he is going only for crunchy

texture foods, but does he take different drinks? Even a tiny amount

of the kefir at a time might help this situation.

Have you ever tried activated charcoal to try to deal with the die-

off? If the activated charcoal helps after giving your son something

like GSE/Nystatin (usually one hour after) then you could reasonably

assume that you're dealing with die-off and not intolerance.

My kid was a crunchy kid too. I can relate. I know how hard it is

to change diet but his diet right now would be making yeast and bad

bacteria worse. Have you tried nuts? Perhaps some sort of homemade

cookie that you could make with coconut oil and fill with crunchy

healthy things? I've not done SCD but your son may be a good

candidate. Just for some down the road info, my son's texture issues

became much better after a viral protocol.

What sort of doses and schedules were you using for the chelators?

One thing I've learned about my son recently is that I need to

address his gut issues more if I want nutritional levels to improve.

This would seem to be the case with your son. If his gut is full of

bad stuff, he won't have normal minerals. I'm not in agreement with

many DANs who would postpone chelation for a long time to deal with

these things. Try to get the gut and mineral levels in some sort

of " just acceptable " shape and then begin chelation. If we don't get

the metals out, the gut will never be normal--but, most of our kids

won't have normal guts by just removing the metals. Other steps need

to be taken while chelating.

If I were starting fresh, as you seem to be doing, I would really

make an intense effort over the next couple weeks to deal with

yeast/bacteria with something like OoO or GSE (both do double duty)

and finding some sort of good bacterial source that he'll tolerate

(like young coconut kefir). I think then you need to make a decision

about what to do with his diet. Something all-encompassing like

SCD? or changing one food a week to eventually replace his unhealthy

for the gut choices with other things?

I'm not sure any of this is helpful. I'm sure others will have some

better suggestions.

Best wishes,

Anita