Re: New to SCD... questions

[Guest guest]

Welcome to the group Gerardo,

<< …Do anyone know how many days could the die-off reaction last? >>

Sorry, but there is no way to say how long it could be. Each child

is very different, they have different levels of overgrowth and eat

different foods, supplements etc.. The epsom salt baths should help

some.

<< One more question, do anyone know if the Cod Liver Oil from Nordic

Naturals> " Children's DHA " (formerly known as Berry Keen) is SCD

legal?... >>

Yes, the Nordic Naturals Children's DHA (Berry Kean) is legal. The

strawberry essence comes from the out skin of the strawberry. It has

been checked out.

Sheila, SCD Feb. 2001, UC 23 yrs

mom of emily and

[Guest guest]

Yes, what you are seeing with your daughter waking up and being very stimmy

would be die off, and some people go through this for a few weeks. I do believe

that the Nordic Naturals is legal in the strawberry flavor. Moderaters, correct

me if I'm wrong, but I seem to remember one of you posting recently that this

flavor was in fact legal.

Meleah

New to SCD... questions

Hello everyone,

My name is Gerardo and I have an ASD Daughter, Karla. She has been in GF/CF

diet for 1 year now, with good results. We have been also trying a lot of

biomedical treatments. Karla has been having intestinal infection for

several months now, alternating from yeast to bacteria, back to yeast, both,

etc. That's why we decided to put her in then SCD diet. She has leaky gut

and a little bit of mal-absorption, according to the labs.

We read the BTVC book on October, and started preparing ourselves for couple

of months: looking for ingredients, learning how to cook the special foods,

finding legal supplements, etc.

Early last week we started transitioning her to SCD, and officially her

first absolute SCD day was 12/23. The 23rd went well, on the 24th she

started to be more " stimmy " ; that night she woke up at 2:45 AM, and didn't

went back to sleep until 11:00 AM!. Then the night of the 25th, she woke up

from 12:00 AM to 4:30 AM. Last night, she did " better " , and only woke up

from 2:00 to 3:00AM. When she wakes up at night she is somehow altered, not

crying, but doing a lot of voice stimming, and jumping all over. I guess the

die-off reaction is in progress. We are trying Epsom salt baths, charcoal

before bed time (and when she awakes), and melatonin.

.Do anyone know how many days could the die-off reaction last?

One more question, do anyone know if the Cod Liver Oil from Nordic Naturals

" Children's DHA " (formerly known as Berry Keen) is SCD legal?...

I contacted Nordic Naturals customer service and they " swear " that it's

legal. I particularly questioned the Strawberry essence for disaccharides

and polysaccharides, sweeteners, grains, etc. And they mentioned that it

does not contain them. I asked for the ingredients of this essence, and they

mentioned that it's a proprietary blend, and they can't disclose it.

Thanks in advance for your help!

Gerardo

Father of Karla 3 ½ yr (ASD)

[Guest guest]

Gerardo,

Were you giving your daughter melatonin BEFORE she started SCD? Or is this new?

I only ask because I have been a lifelong insomniac.... and was anxious to try

melatonin when I first heard of it a number of years ago. Interestingly, it had

the REVERSE effect on me.... and I did not sleep AT ALL the nights I took it.

Not one wink! I later read that about 5% of people respond to melatonin that

way. Very disappointing.

It sounds likely that die-off is the issue for your daughter right now. Take

heart... it is temporary!

Can you tell us exactly what she is eating right now?

Patti

New to SCD... questions

Hello everyone,

My name is Gerardo and I have an ASD Daughter, Karla. She has been in GF/CF

diet for 1 year now, with good results. We have been also trying a lot of

biomedical treatments. Karla has been having intestinal infection for

several months now, alternating from yeast to bacteria, back to yeast, both,

etc. That's why we decided to put her in then SCD diet. She has leaky gut

and a little bit of mal-absorption, according to the labs.

We read the BTVC book on October, and started preparing ourselves for couple

of months: looking for ingredients, learning how to cook the special foods,

finding legal supplements, etc.

Early last week we started transitioning her to SCD, and officially her

first absolute SCD day was 12/23. The 23rd went well, on the 24th she

started to be more " stimmy " ; that night she woke up at 2:45 AM, and didn't

went back to sleep until 11:00 AM!. Then the night of the 25th, she woke up

from 12:00 AM to 4:30 AM. Last night, she did " better " , and only woke up

from 2:00 to 3:00AM. When she wakes up at night she is somehow altered, not

crying, but doing a lot of voice stimming, and jumping all over. I guess the

die-off reaction is in progress. We are trying Epsom salt baths, charcoal

before bed time (and when she awakes), and melatonin.

.Do anyone know how many days could the die-off reaction last?

One more question, do anyone know if the Cod Liver Oil from Nordic Naturals

" Children's DHA " (formerly known as Berry Keen) is SCD legal?...

I contacted Nordic Naturals customer service and they " swear " that it's

legal. I particularly questioned the Strawberry essence for disaccharides

and polysaccharides, sweeteners, grains, etc. And they mentioned that it

does not contain them. I asked for the ingredients of this essence, and they

mentioned that it's a proprietary blend, and they can't disclose it.

Thanks in advance for your help!

Gerardo

Father of Karla 3 ½ yr (ASD)

[Guest guest]

Thanks Sheila, Meleah, Patti, all, for your quick reply to my message!

Let me tell you that last night Karla slept all the way through the night,

and me too!!!; let see how she continues sleeping the following nights.

During the day she has been hyper and continues with voice stims, but not

that bad.

Thanks for your response; I’ll continue using the CLO from Nordic Naturals

then.

Patti, let me respond to some of your questions…

Were you giving your daughter melatonin BEFORE she started SCD? Or is this

new?

>>> Yes I have used melatonin with Karla for many months now, and it has

been a blessing. It really helps her to go to sleep when she is hyper at bet

time, and to go back to sleep when she wakes up in the middle of the night.

Can you tell us exactly what she is eating right now?

Karla is a very picky eater child, and I guess this may be helping with the

SCD diet… Fewer things to replace.

She is eating almond bread and cookies. Chicken in tomato-peanut sauce,

Guacamole & Salsa on Pork rinds, fruits (banana, pear, apple, grapes), juice

(orange and apple cider), meatballs, chicken nuggets & chicken-pancakes. She

may eat a bite or two of each of the choices, depending on how hungry she

is. But she seems to be eating better lately.

We have noticed that she is really craving for her “old” food, looking here

and there (but everything is gone now). She is still non-verbal, so can’t

tell us what she wants, but she takes us to the fridge and the places were

we had the old food, and looks disappointed when can’t find what she wanted…

it’s kind of sad, though.

Best regards,

Gerardo

Father of Karla 3 ½ yr (ASD)

[Guest guest]

Jerardo,

I'm concerned about some of the foods that you've listed. Tell me how long she

has been on SCD again. I believe it's only been a few days, right? If so, she

shouldn't be eating any raw foods like salsa or the fruits that you've listed(if

they're raw, too). Pears and apples would be fine if you are cooking

them...pear/applesauce, steamed pears or apples. I wouldn't recommend grapes so

early. Personally, I feel like the nut flour foods are too soon as well. Are

you using almond flour or almond butter? You also might want to consider

switching to pecan because many kids just digest it more easily. Are you

diluting the juices half and half with water? It's good that she slept through

the ngiht for you. It's common for kids to miss their old favorites. I know

what you mean about it being kind of sad. I feel sad sometimes for my son

because he can't have certain things that others eat. I remember him wandering

around in the kitchen at my house and in friends' homes as well just searching

for food that he wanted. My friends would say that he was hungry. I felt sad

for him that he was so confused and probably just unsettled. He got over it

after several weeks though. You're doing what's best for her health, and you

can feel good about that. Just keep reminding yourself of that.

Meleah

Re: New to SCD... questions

Thanks Sheila, Meleah, Patti, all, for your quick reply to my message!

Let me tell you that last night Karla slept all the way through the night,

and me too!!!; let see how she continues sleeping the following nights.

During the day she has been hyper and continues with voice stims, but not

that bad.

Thanks for your response; I'll continue using the CLO from Nordic Naturals

then.

Patti, let me respond to some of your questions.

Were you giving your daughter melatonin BEFORE she started SCD? Or is this

new?

>>> Yes I have used melatonin with Karla for many months now, and it has

been a blessing. It really helps her to go to sleep when she is hyper at bet

time, and to go back to sleep when she wakes up in the middle of the night.

Can you tell us exactly what she is eating right now?

Karla is a very picky eater child, and I guess this may be helping with the

SCD diet. Fewer things to replace.

She is eating almond bread and cookies. Chicken in tomato-peanut sauce,

Guacamole & Salsa on Pork rinds, fruits (banana, pear, apple, grapes), juice

(orange and apple cider), meatballs, chicken nuggets & chicken-pancakes. She

may eat a bite or two of each of the choices, depending on how hungry she

is. But she seems to be eating better lately.

We have noticed that she is really craving for her " old " food, looking here

and there (but everything is gone now). She is still non-verbal, so can't

tell us what she wants, but she takes us to the fridge and the places were

we had the old food, and looks disappointed when can't find what she wanted.

it's kind of sad, though.

Best regards,

Gerardo

Father of Karla 3 ½ yr (ASD)

[Guest guest]

Hello..... How did you get your information on how to start SCD? Are you

working with a physician? Or just the book? It seems that you are new to this

list.... and I do honestly wish you had joined us before starting the diet.

I don't know why people are being told that pork rinds are an SCD legal food.

They might *seem* to be legal, but I'm here to tell you..... you need to pull

those out immediately. We have had other kids here on this list who have not

done well at ALL while eating them. I would not consider them a food fit for any

child to eat.... let alone an SCD child. Just my opinion, but that would be the

first thing to pull, if I were you.

Also....you mentioned a " peanut sauce " . I assume made with peanut butter? We

have found that many SCD kids do not do very well with peanut butter in the

beginning stages of the diet. Just so you know.... if she does not make

dramatic and dazzling progress, ongoing, I'd consider swapping that for another

nut butter. Peanuts are legumes.... not nuts.... and legumes are considered an

advanced food, not to be introduced for several months.

I don't see much in the way of vegetables.... except for tomatoes. You mention

salsa... which I assume might contain onion? This would be a much more advanced

food.... certainly not for a beginner. Have you seen the " stages " chart on

www.pecanbread.com ? It gives you a guideline for which foods are easier to

digest, and therefore better to introduce first. Look in the " Food Preparation "

section and scroll down.

Patti

Re: New to SCD... questions

She is eating almond bread and cookies. Chicken in tomato-peanut sauce,

Guacamole & Salsa on Pork rinds, fruits (banana, pear, apple, grapes), juice

(orange and apple cider), meatballs, chicken nuggets & chicken-pancakes. She

may eat a bite or two of each of the choices, depending on how hungry she

is. But she seems to be eating better lately.

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[Guest guest]

Meleah, Patti, all,

Thanks for your responses, encouraging words, questions, and knowledge

share. I really appreciate taking the time to reply to my message.

Karla had her second in a row good sleeping night, so things are looking

good in this field.

Today is the 7th day that Karla is 100% on the diet, but we started a good

part of the transition 2 weeks ago. I started the SCD with the information

in the book mainly. I joined the SCD list early December, and I have been

trying to read the posts.

Let me give you some additional background. Karla's BM's have always seemed

to be fairly good; she does not have diarrhea or constipation. We have been

giving digestive enzymes since last September with each of her meals, and we

are continuing them on the SCD diet. We are using H.N. No-Fenol, ZymePrime

and AFP-Peptizyde. My assumption was that the enzymes would help her

intestine to digest the foods.

After your comments, I'm a little bit confused about the foods. The BTVC

book mentions that at the beginning of the program, when diarrhea and

cramping are severe, a basic diet should be followed for 5 days, and in

other cases 1-2 days are sufficient. It also says that raw fruits &

vegetables should not be introduced until diarrhea is in control. Since

Karla does not have diarrhea, my interpretation was that it was OK to keep

giving them to her after the 2 initial days (and the same for the nut

flours).

She has not had any reaction with the foods I listed, so I thought that they

were OK. Could you comment?

***Meleah, let me answer your questions:

Tell me how long she has been on SCD again. I believe it's only been a few

days, right?

>>>Seven days.

If so, she shouldn't be eating any raw foods like salsa or the fruits that

you've listed(if they're raw, too). Pears and apples would be fine if you

are cooking them...pear/applesauce, steamed pears or apples. I wouldn't

recommend grapes so early.

Personally, I feel like the nut flour foods are too soon as well. Are you

using almond flour or almond butter?

>>> I'm using almond & walnut flour

You also might want to consider switching to pecan because many kids just

digest it more easily.

Are you diluting the juices half and half with water?

>>>Yes

***Patti, let me answer your questions:

Hello..... How did you get your information on how to start SCD? Are you

working with a physician? Or just the book? It seems that you are new to

this list.... and I do honestly wish you had joined us before starting the

diet.

>>>. I started the SCD with the information in the book mainly. I joined

the SCD list early December, and I have been trying to read the posts.

I don't know why people are being told that pork rinds are an SCD legal

food. They might *seem* to be legal, but I'm here to tell you..... you need

to pull those out immediately. We have had other kids here on this list who

have not done well at ALL while eating them. I would not consider them a

food fit for any child to eat.... let alone an SCD child. Just my opinion,

but that would be the first thing to pull, if I were you.

>>> We were using the pork rinds as a tortilla chips substitutes, since my

daughter loved the chips. I got the idea from one of the links locate at the

pecanbread.com - recipes web site: " Pictures of some fun SCDT kid-friendly

foods along with the recipes can be found at:

SCD Kid's Foods <http://www.geocities.com/momtobandj/scdpictures.html> "

http://www.geocities.com/momtobandj/chickensaladsalsa.html... I was not

aware that they were that bad, but I can definitely stop them. I was trying

to use crackers as substitute, but I have not been able to successfully bake

them (after baking the crackers, they easily break just by touching them)

>>> Do you know of a good recipe for dairy free crackers?

Also....you mentioned a " peanut sauce " . I assume made with peanut butter? We

have found that many SCD kids do not do very well with peanut butter in the

beginning stages of the diet. Just so you know.... if she does not make

dramatic and dazzling progress, ongoing, I'd consider swapping that for

another nut butter. Peanuts are legumes.... not nuts.... and legumes are

considered an advanced food, not to be introduced for several months.

>>> Yes, I was using peanut butter. So I can substitute it with cashew or

almond butter then.

I don't see much in the way of vegetables.... except for tomatoes.

>>> My daughter won't eat vegetables other than tomatoes.

You mention salsa... which I assume might contain onion?

>>> Yes

This would be a much more advanced food.... certainly not for a beginner.

Have you seen the " stages " chart on www.pecanbread.com ? It gives you a

guideline for which foods are easier to digest, and therefore better to

introduce first. Look in the " Food Preparation " section and scroll down.

>>> I had not. I just took a look of it, and I have a question: how long

should each stage last?

Thanks again, and Happy New Year!!!

Gerardo

[Guest guest]

There's no set time on how long the stages should take. Just remember to move

slowly. My son has been using SCD for almost 7 mths. now, but we're still

staying in the stage 2 area for the most part...still all cooked and pealed

fruits and veggies, but occassionally whole nuts. The BMs are a good way to

tell if she is ready to move on, but you also need to watch for other signs like

changes in behavior, red cheeks, dark circles under eyes, red ears, ect.

Unreadiness to move to more difficult to digest foods can come in many forms.

Also, do not switch to cashew butter. They are one of the starchiest of nuts,

and a very advanced food. Try the almond butter...blanched is best, but I only

know of buying that through digestivewellness.com...or you can make your own

pecan butter by grinding whole, shelled pecans with a little oil in the blender

or food processer. As Patty mentioned in another post, she was corrected that

pork rinds are OK on SCD, but it probably isn't a good idea to allow your

daughter to have them so early in the diet. When you say that your daughter

won't eat veggies, what exactly does she do when they are presented to her? She

needs vegetables in her diet. This is so, so important. Have you tried juicing

any in combination with freshly made fruit juices? Also, there are some pretty

sneaky ways to get the cooked vegetables in her. I really don't have to deal

with that. Fortunately, my son will eat them if I tell him that he must eat

them. He won't do it himself, but will allow me to feed them to him. I know

that Patty has some good ideas on sneaking the beggies in, and I hope that

others will also share their tricks. The digestive enzymes are fine as long as

you are certain that you're using an SCD legal one.

Meleah

Re: New to SCD... questions

Meleah, Patti, all,

Thanks for your responses, encouraging words, questions, and knowledge

share. I really appreciate taking the time to reply to my message.

Karla had her second in a row good sleeping night, so things are looking

good in this field.

Today is the 7th day that Karla is 100% on the diet, but we started a good

part of the transition 2 weeks ago. I started the SCD with the information

in the book mainly. I joined the SCD list early December, and I have been

trying to read the posts.

Let me give you some additional background. Karla's BM's have always seemed

to be fairly good; she does not have diarrhea or constipation. We have been

giving digestive enzymes since last September with each of her meals, and we

are continuing them on the SCD diet. We are using H.N. No-Fenol, ZymePrime

and AFP-Peptizyde. My assumption was that the enzymes would help her

intestine to digest the foods.

After your comments, I'm a little bit confused about the foods. The BTVC

book mentions that at the beginning of the program, when diarrhea and

cramping are severe, a basic diet should be followed for 5 days, and in

other cases 1-2 days are sufficient. It also says that raw fruits &

vegetables should not be introduced until diarrhea is in control. Since

Karla does not have diarrhea, my interpretation was that it was OK to keep

giving them to her after the 2 initial days (and the same for the nut

flours).

She has not had any reaction with the foods I listed, so I thought that they

were OK. Could you comment?

***Meleah, let me answer your questions:

Tell me how long she has been on SCD again. I believe it's only been a few

days, right?

>>>Seven days.

If so, she shouldn't be eating any raw foods like salsa or the fruits that

you've listed(if they're raw, too). Pears and apples would be fine if you

are cooking them...pear/applesauce, steamed pears or apples. I wouldn't

recommend grapes so early.

Personally, I feel like the nut flour foods are too soon as well. Are you

using almond flour or almond butter?

>>> I'm using almond & walnut flour

You also might want to consider switching to pecan because many kids just

digest it more easily.

Are you diluting the juices half and half with water?

>>>Yes

***Patti, let me answer your questions:

Hello..... How did you get your information on how to start SCD? Are you

working with a physician? Or just the book? It seems that you are new to

this list.... and I do honestly wish you had joined us before starting the

diet.

>>>. I started the SCD with the information in the book mainly. I joined

the SCD list early December, and I have been trying to read the posts.

I don't know why people are being told that pork rinds are an SCD legal

food. They might *seem* to be legal, but I'm here to tell you..... you need

to pull those out immediately. We have had other kids here on this list who

have not done well at ALL while eating them. I would not consider them a

food fit for any child to eat.... let alone an SCD child. Just my opinion,

but that would be the first thing to pull, if I were you.

>>> We were using the pork rinds as a tortilla chips substitutes, since my

daughter loved the chips. I got the idea from one of the links locate at the

pecanbread.com - recipes web site: " Pictures of some fun SCDT kid-friendly

foods along with the recipes can be found at:

SCD Kid's Foods <http://www.geocities.com/momtobandj/scdpictures.html> "

http://www.geocities.com/momtobandj/chickensaladsalsa.html... I was not

aware that they were that bad, but I can definitely stop them. I was trying

to use crackers as substitute, but I have not been able to successfully bake

them (after baking the crackers, they easily break just by touching them)

>>> Do you know of a good recipe for dairy free crackers?

Also....you mentioned a " peanut sauce " . I assume made with peanut butter? We

have found that many SCD kids do not do very well with peanut butter in the

beginning stages of the diet. Just so you know.... if she does not make

dramatic and dazzling progress, ongoing, I'd consider swapping that for

another nut butter. Peanuts are legumes.... not nuts.... and legumes are

considered an advanced food, not to be introduced for several months.

>>> Yes, I was using peanut butter. So I can substitute it with cashew or

almond butter then.

I don't see much in the way of vegetables.... except for tomatoes.

>>> My daughter won't eat vegetables other than tomatoes.

You mention salsa... which I assume might contain onion?

>>> Yes

This would be a much more advanced food.... certainly not for a beginner.

Have you seen the " stages " chart on www.pecanbread.com ? It gives you a

guideline for which foods are easier to digest, and therefore better to

introduce first. Look in the " Food Preparation " section and scroll down.

>>> I had not. I just took a look of it, and I have a question: how long

should each stage last?

Thanks again, and Happy New Year!!!

Gerardo