Re: Die off from Intro Diet

[Guest guest]

Larry and Suzanne,

This does sound like pretty typical die-off symptoms... very common in the very

beginning.

Epsom salts baths may be a good thing to try right now, too.... as well as the

activated charcoal.

I'm wondering why you're using coconut milk, though. It would not be illegal

later (as long as it is home-made), but is not an " intro " diet food.

Also, it sounds like she is not getting any carbodyrates at all... except maybe

honey? This could be contributing to her feeling lethargic. It would be nice if

she'd accept some grape juice or pureed carrots in the chicken broth. Did you

already have that included in the broth she had yesterday?

You could make the diluted juice into home-made " jello " ... do you think she'd

accept it? Or freeze the juice and crush it into sort of a " sorbet " ?

I honestly don't know much about using Nystatin while on SCD, except that I know

some parents have reported sort of a " rebound " effect when stopping it... and

have had better luck with natural anti-fungals in that regard.

Many years ago, my oldest son (neuro-typical... and not on SCD) had a yeast

infection as a baby, for which Nystatin was prescribed... and we ended up going

through three refills of Nystatin ($$$) with zero success.

Frustrated, I turned to a naturopath, who advised me to give him a half teaspoon

of good, live-culture yogurt (this was not SCD yogurt... just some I found in a

health food store) every day. Within a week, all signs of thrush in his mouth...

and rash on the other end... disappeared, never to return. That was my one and

only experience with Nystatin.

Patti

Die off from Intro Diet

Hello,

We officially started the intro diet on Saturday and need advice on

what we are seeing. My daughter (3 1/2 year old) had her

last illegal item on Friday night at 8 pm. On Sat. we gave her

coconut milk sweetened with a little honey and legal supplements

early morning. We then had scramble eggs for breakfast which she

enjoyed a lot. Her behaviors changed to being calm instead of hyper

and out of sorts. This was a noticeable improvement. For lunch we had

check broth with egg and finely chopped chicken she ate some but

wound up playing with it after a while. Her behaviors continued to be

calm and alert. We tried to give her a mid-afternoon bottle of

watered down Welch's grape juice but she would have nothing to do

with it. We eventually gave her the coconut milk. Later, for dinner

we made chicken pancakes and she tasted them but would not eat any.

She then napped for a few hours and intially refused her last bottle

of coconut milk with supplements. She did eventually take the bottle.

She went to bed at 9:30 PM but did not fall asleep until Mid-night.

She has been very cranked ever since. This morning she took her

morning bottle of coconut milk and ate a generous portion of

scrambled eggs. Her behavior is lethargic and cranky with fits of

crying. Does this sound like die off? Would activated charcoal help?

I should mention that she had two doses of Nystatin yesterday and

those where given in the afternoon and evening bottle. I did not give

her any Nystatin today. Should we avoid giving more Nystatin until

thing settle down a bit?

Your opinions would be appreciated.

Larry & Suzanne

[Guest guest]

Patti,

Thanks for your comments. We are using coconut milk that I make from

scratch (Desicated coconut & hot water in a blender). Before the

diet, we were giving her rice milk and the coconut was suggested by

another person from this list. does not chew so the grape juice

gelaton would not work. Carrots were not being digested very well

before starting the diet so we thought we would hold off introducing

them. We tried the grape juice slushy last night and she did not go

for it.

is very averse to baths lately so epsom salt bath would be

difficult. We could apply the kirkman magnesium cream though.

I am thinking about cooking up a butternut squash for use in the

soup. Would that seem ok?

Thanks again,

Larry & Suzanne

[Guest guest]

Dear Larry and Suzanne,

WE also had problems with Nystatin. Just like Patti, we have had

much better success using SCD safe probiotics and the goat yogurt in

fighting the yeasty beasties and gut dysbiosis. I was told her at

Pecan Bread that when the rest of the gut flora is out of balance

that yeast remains. Nystatin does nothing to kill the other bad

guys that the yeast NEEDS to survive. This is why the yeast comes

back. Kill the other bad guys by starving them with SCDiet and the

yeast go back into balance or perish. This is also why die off is

not fun. They give off toxins when the bad guys die. Making us

feel sick!

The last time our daughter was prescribed Nystatin by her DAN! we

paid to have it especialy coumpounded to make it SCD safe. WE ened

up not using it more than two days, and now wish we hadn't spent the

money. This is why:

Some one told me her from Pecan Bread to open a accidolphilus

capsule and put the powder in the mouth before bed if one has

thrush. And like the BTVC book says to cut back on the honey and

water down the juice. WE did this and it worked.

Just like already suggested, activated charcoal capsules where a God

send for that toxic feeling of die off. Epson Salt baths did help

too. Hang in there this transition is the pits. But worth it.

Antoinette Mother to Kiki-2 celiac/asd/pdd Entire family of five SCD

2/06

[Guest guest]

Hi....

Well, using coconut milk while on intro means you're sort of not exactly doing

the intro diet. That's okay, if you feel that is the only way you could start

her on SCD. You may want to go back at some point and really do intro including

ONLY those foods that are suggested for those two days.

Quite a few families have done a sort of " customized " or adapted intro, if their

children truly would not or could not eat the standard intro foods, for whatever

reason. Many have then gone back and done a " real " intro diet later, to find

they really get a further jump start on progress.

There is a really good reason for doing intro as prescribed in the book.... to

" clear the decks " and get ready for the real SCD. But, you can decide when or if

to do that, I guess. Just know that you may *possibly* not see the progress you

might have.

Coconut milk is a great food (certainly better than rice milk!).... just not an

intro food. Same with butternut squash, though if your daughter can't have

carrots, it seems to me that this would be better than not having any carbs at

all.

Yes, definitely try the cream or lotion. It's a good alternative to the baths. I

use my own home-made epsom salts lotion on my daughter.

Patti

Re: Die off from Intro Diet

Patti,

Thanks for your comments. We are using coconut milk that I make from

scratch (Desicated coconut & hot water in a blender). Before the

diet, we were giving her rice milk and the coconut was suggested by

another person from this list. does not chew so the grape juice

gelaton would not work. Carrots were not being digested very well

before starting the diet so we thought we would hold off introducing

them. We tried the grape juice slushy last night and she did not go

for it.

is very averse to baths lately so epsom salt bath would be

difficult. We could apply the kirkman magnesium cream though.

I am thinking about cooking up a butternut squash for use in the

soup. Would that seem ok?

Thanks again,

Larry & Suzanne

[Guest guest]

Larry and Suzanne,

Is the Nystatin compounded or is it from a regular pharmacy?

Jody

mom to -7 and -9

SCD 1/03

[Guest guest]

> Larry and Suzanne,

>

> Is the Nystatin compounded or is it from a regular pharmacy?

>

>

> Jody

Good question Jody!

Is it possible to compound a friendly version if Nystatin?

We SCD-ers are blessed with two expert compounding pharmacists in

Toronto. One " translated " my basic needs into SCD compliant formats and

they give me no grief.

In my case they are Benadryl and acetaminophen and I restrict my use

sometimes for months.

Carol F.

Celiac, MCS, Latex Allergy, EMS

SCD 6 years

[Guest guest]

" Is it possible to compound a friendly version if Nystatin? "

Coastal Compounding, Hopewell Pharmacy and I can't remember the name

of any others...

All of these make many medicines that are widely used in the autism

community and I am pretty sure that they can all make SCD legal

formulas of Nystatin.

Jody

mom to -7 and -9

SCD 1/03

[Guest guest]

Jody,

The Nystatin is compounded by Lee Silsby out of Cleaveland. We have to

break open the capsule and put it in her bottles. It is very bitter,

but she will usually take it from the bottle.

At the moment is doing ok. She just finished some scambled eggs

with some ground beef mixed in. Do you think we can start stage one

tomorrow? She had a BM this afternoon and it was very solid. She has

been on the diet since Saturday morning.

I hope I did'nt leave anything out.

Larry & Suzanne

>

> Larry and Suzanne,

>

> Is the Nystatin compounded or is it from a regular pharmacy?

>

>

> Jody

> mom to -7 and -9

> SCD 1/03

>

[Guest guest]

I just started SCD about 2 weeks ago with my daughter, also 3 1/2.

The one thing I have to say regarding Nystatin and die-off is that

it is hard to know what kind of die-off your daughter is

experiencing. I think my daughter's was bacterial die-off - she was

very aggressive, didn't like baths, bit alot, cranky, tired, etc. I

have not done any yeast treatments since starting SCD and her yeast

has seemed to increase (stimmy, toe-walking, stumbling, scripting)

but I read that can happen when bacteria is dieing. A month ago I

went after yeast very eagerly with a rotation of all kinds of

things - it ended up increasing bacteria - because sometimes if you

kill too much yeast the bacteria will grow. I decided I needed to

back off a bit on the yeast treating - increasing bacteria is bad -

my daughter had a hard time with that! I am planning on adding in

the acidophilus and yogurt and will address yeast as needed but

cautiously. I am hoping if I manage her diet better things will

improve but this may be over time. Also, I have heard other

negatives about nystatin (not good on liver, etc.). Hang in there.

I was very depressed when my daugher went through die-off, I didn't

realize why until she started to improve but her behaviors,

language, etc regressed during that time. It should get better

soon!

>

> Hello,

>

> We officially started the intro diet on Saturday and need advice

on

> what we are seeing. My daughter (3 1/2 year old) had her

> last illegal item on Friday night at 8 pm. On Sat. we gave her

> coconut milk sweetened with a little honey and legal supplements

> early morning. We then had scramble eggs for breakfast which she

> enjoyed a lot. Her behaviors changed to being calm instead of

hyper

> and out of sorts. This was a noticeable improvement. For lunch we

had

> check broth with egg and finely chopped chicken she ate some but

> wound up playing with it after a while. Her behaviors continued to

be

> calm and alert. We tried to give her a mid-afternoon bottle of

> watered down Welch's grape juice but she would have nothing to do

> with it. We eventually gave her the coconut milk. Later, for

dinner

> we made chicken pancakes and she tasted them but would not eat

any.

> She then napped for a few hours and intially refused her last

bottle

> of coconut milk with supplements. She did eventually take the

bottle.

> She went to bed at 9:30 PM but did not fall asleep until Mid-

night.

> She has been very cranked ever since. This morning she took her

> morning bottle of coconut milk and ate a generous portion of

> scrambled eggs. Her behavior is lethargic and cranky with fits of

> crying. Does this sound like die off? Would activated charcoal

help?

> I should mention that she had two doses of Nystatin yesterday and

> those where given in the afternoon and evening bottle. I did not

give

> her any Nystatin today. Should we avoid giving more Nystatin until

> thing settle down a bit?

> Your opinions would be appreciated.

>

> Larry & Suzanne

>