Re: so, maybe this isn't working...

[Guest guest]

> I have read several times that after a month you can usually tell if

> the diet is working. We have been doing this for three weeks and I am

> starting to doubt my sanity. This evening Kasam has been more hyper

> than he has for a very long time, jumping on the bed, knocking chairs

> over, running, uncontrolled laughing, screaming, and trying to bite

> (not just me, but also the cat numerous times)

Cindy, this typical die off behavior. Can you hang in a little longer?

Carol F.

Celiac, MCS, Latex Allergy, EMS

SCD 6 years

[Guest guest]

How much longer Carol? I am tired of being up all night everynight

and feeding this kid around the clock not to mention going through

close to ten pull ups a day since we are up close to 24 hours at a

time. We are sleeping about three hour strethces twice per 24 hour

periods. Does this end soon? Neither one of us are truly happy,

mostly grumpy, hungry, and tired. I have never been grumpier and

currently I am not enjoying being a mom, which I can honestly say i

have never felt this way before. So, exactly when should we start

to see some relief in all of this? It better come soon before this

mom retires, which I would hate to see in only three weeks, but they

have been three of the worst weeks of my entire life.

Thanks Carol for your support

cindy

>

> > I have read several times that after a month you can usually

tell if

> > the diet is working. We have been doing this for three weeks

and I am

> > starting to doubt my sanity. This evening Kasam has been more

hyper

> > than he has for a very long time, jumping on the bed, knocking

chairs

> > over, running, uncontrolled laughing, screaming, and trying to

bite

> > (not just me, but also the cat numerous times)

>

> Cindy, this typical die off behavior. Can you hang in a little

longer?

>

> Carol F.

> Celiac, MCS, Latex Allergy, EMS

> SCD 6 years

>

[Guest guest]

> We are going through the same thing !!! I feel like DIE oFFis not

the righrt word for it. I ccan say the frist time we went through it

at the start off the diet it was very hard. But good things will

come. My husband and I never new the child we got after going on this

diet. And my son is giong through a hard time right now but I just

have to pray once he gets over it we are going to see that same new

kid. TI is hard no doubt about it. Some many times I have packed my

bags. at least there is hope we can make the kido s lifes so much

better.

>

> >

> > > I have read several times that after a month you can usually

> tell if

> > > the diet is working. We have been doing this for three weeks

> and I am

> > > starting to doubt my sanity. This evening Kasam has been more

> hyper

> > > than he has for a very long time, jumping on the bed, knocking

> chairs

> > > over, running, uncontrolled laughing, screaming, and trying to

> bite

> > > (not just me, but also the cat numerous times)

> >

> > Cindy, this typical die off behavior. Can you hang in a little

> longer?

> >

> > Carol F.

> > Celiac, MCS, Latex Allergy, EMS

> > SCD 6 years

> >

>

[Guest guest]

> How much longer Carol?

We usually suggest one month as a trial. If you are unhappy after

another week perhaps SCD is not for your child. You have the option of

trying to address the problems and returning to SCD in the future.

Elaine states that although the diet proves effecive in most cases it

may not be for everyone.

Carol F.

Celiac, MCS, Latex Allergy, EMS

SCD 6 years

[Guest guest]

dear j:

.. Now, not all symptoms of worsening are die off reactions. You need to look

at what you are feeding your kids. Yogurt of any kind, honey and some foods

( eg, allergenic IgG or IgE) are not good for some kids, whether on SCD or

not. The Moms are the detectives on this.

If you have a notebook for documenting meals, behaviors, bowel movements,

look at it. Going to the basics usually gives you a lot of information. Some

people have very strong IgG reactions as well. Before you are well into the

diet, this reactions will still affect you since the gut is not healed yet.

If you have any IgG testing done, look at it, review if you see how many and

how much of these foods you are giving your child.

SCD does not heal you immediately, so there might also be overgrowth of some

bugs as some of the other ones are dying. Dr O'hara referred in a previous

DAN conference that if you were not on SCD for at least 6months, you were

not on SCD at all (for ASD). There is a reason for that, the gut needs time

to heal. Rotating foods for us has been a must, since when we started the

diet we had many problems like this. It has worked for us to do this diet

dairy free, nut free, honey free, grape and apple free. Yeasts love our

guts, so we have to be very careful.

I am not saying that I am certain SCD is the answer for you, but before you

decide to stop doing it, the best advice that I can give you is to look in

your documentation or start doing that, think about the testing if your

doctor is accessible, and see how you can do SCD that works for you. SCD is

NOT GENERIC. We all have to do it a little bit different from each other to

make it work for our particular needs. The more you learn about it, the more

advantage you can get, and you can make the decisions for your children if

you learn about it yourself. Verify all advice you get, including this one,

we all have the best intention but nobody knows the details of the situation

better than you, the mom.

I think that you are being a Tremendous Mom right now. During the hard times

is when it matters the most for us to be with them and help them. Take a

deep breath and evaluate the situation carefully before you make any moves.

Best luck,

maria

mom to fiol, 19 mo scd 1/06

>

>

>

> > How much longer Carol?

>

> We usually suggest one month as a trial. If you are unhappy after

> another week perhaps SCD is not for your child. You have the option of

> trying to address the problems and returning to SCD in the future.

> Elaine states that although the diet proves effecive in most cases it

> may not be for everyone.

>

>

> Carol F.

> Celiac, MCS, Latex Allergy, EMS

> SCD 6 years

>

>

>

[Guest guest]

Cindy,

You sound so tired and discouraged. I wish I could come sit with him while you

nap!

I really think it would take longer than one month to give SCD an honest shot...

but I can understand your frustration. It's also impossible for us to say " how

long " for any one kid.... as each is so unique. I hope the DAN doctor can offer

some ideas.

Is there ANY possibility of getting someone to come in and give you 24 hrs

respite to rest and sleep?? It just sounds like that's what you need most....

immediately!

Patti

Re: so, maybe this isn't working...

So, exactly when should we start

to see some relief in all of this? It better come soon before this

mom retires, which I would hate to see in only three weeks, but they

have been three of the worst weeks of my entire life.

Thanks Carol for your support

cindy

[Guest guest]

I'm pretty new to SCD and doing the diet myself for about 3 weeks. I

have compassion for your situation Carol, and try to put myself in

your boy's shoes. I wake up in the middle of the night hungry, but I

can go feed myself. I started SCD without the intro diet, and just

did the intro diet for two days this weekend. The only way I could

stay satiated was to eat about every hour or two. Cooking large

amounts of food and having them on hand when hungry has been key.

I have to be my own detective, and it is frustrating, but I usually

figure out what is bothering me after about a day or two. I keep a

food journal and notes on my stools. Little things like drinking

apple juice alone didn't work for me, but mixed with gelatin it was

ok. This diet is like learning a new language. You have to learn

which foods your child tolerates and does not. Honey does not work

for me at this point. Too much fruit isn't good for me either.

Peeling and cooking my fruit is better, and I'm learning which fruits

to avoid.

At one point, I was so frustrated that I decided I was just going to

eat the easiest thing I could get at that moment because I was so

hungry. I don't think that's necessarily a bad thing, as long as

it's healthy food, but I learned that I have to cook a lot ahead of

time so that I don't get hungry (easier said than done when you have

a full time job). So that day I felt frustrated, I ate brown rice,

and it all came out of me in a unformed heap. Ok, so that didn't

work. Back to square one.

I get cranky because I'm hungry, or maybe I'm having somekind of die

off. My stools were perfectly formed after the intro diet. My

second day on the intro diet, I felt fine. I don't know how it all

works yet, but I'm willing to hang on a little longer to see what

happens. When you are tired, that's hard to do.

I hope you can find someone who can help you cook and/or shop. Maybe

you let your child eat something that isn't SCD legal, and see what

happens. Maybe the results will convince you to go back to SCD.

This certainly isn't an easy diet, but I know at least I'm eating a

lot healthier!

Claire

>

> dear j:

>

> . Now, not all symptoms of worsening are die off reactions. You

need to look

> at what you are feeding your kids. Yogurt of any kind, honey and

some foods

> ( eg, allergenic IgG or IgE) are not good for some kids, whether on

SCD or

> not. The Moms are the detectives on this.

>

> If you have a notebook for documenting meals, behaviors, bowel

movements,

> look at it. Going to the basics usually gives you a lot of

information. Some

> people have very strong IgG reactions as well. Before you are well

into the

> diet, this reactions will still affect you since the gut is not

healed yet.

> If you have any IgG testing done, look at it, review if you see how

many and

> how much of these foods you are giving your child.

>

> SCD does not heal you immediately, so there might also be

overgrowth of some

> bugs as some of the other ones are dying. Dr O'hara referred in a

previous

> DAN conference that if you were not on SCD for at least 6months,

you were

> not on SCD at all (for ASD). There is a reason for that, the gut

needs time

> to heal. Rotating foods for us has been a must, since when we

started the

> diet we had many problems like this. It has worked for us to do

this diet

> dairy free, nut free, honey free, grape and apple free. Yeasts love

our

> guts, so we have to be very careful.

>

> I am not saying that I am certain SCD is the answer for you, but

before you

> decide to stop doing it, the best advice that I can give you is to

look in

> your documentation or start doing that, think about the testing if

your

> doctor is accessible, and see how you can do SCD that works for

you. SCD is

> NOT GENERIC. We all have to do it a little bit different from each

other to

> make it work for our particular needs. The more you learn about it,

the more

> advantage you can get, and you can make the decisions for your

children if

> you learn about it yourself. Verify all advice you get, including

this one,

> we all have the best intention but nobody knows the details of the

situation

> better than you, the mom.

>

> I think that you are being a Tremendous Mom right now. During the

hard times

> is when it matters the most for us to be with them and help them.

Take a

> deep breath and evaluate the situation carefully before you make

any moves.

>

> Best luck,

>

> maria

> mom to fiol, 19 mo scd 1/06

[Guest guest]

This evening Kasam has been more hyper

> > than he has for a very long time, jumping on the bed, knocking

chairs

> > over, running, uncontrolled laughing, screaming, and trying to

bite

> > (not just me, but also the cat numerous times)

>

I found with BJ that certain foods containing too much sugar

(carrots, honey, or too much fruit) cause hyper behaviors because the

yeast has exploded. He will laugh uncontrollably, hit people, have a

hard time following directions without a fight. Then there could be

specific reactions to specific foods. When we took out the nuts,

especially the peanut butter, he stopped hitting his mother.

What is he eating? I'm trying to limit BJ's fruits, but there's so

much in season and the rest of the family wants to eat them, so

there's plenty in the house.

To kill yeast quickly, I'll chop a clove of garlic and put it on a

spoon of applesauce, which he swallows with no problem. But then

again, he'll eat just about anything.

Sue

[Guest guest]

Hi Cindy,

> I was thinking along the lines of yeast as well. We see a DAN dr

in

> a little over a week, is this something he will be able to help us

> with? We are already up tonight, actually we have been up for an

> hour and a half. I am doubting myself greatly. I have no

patience

> for waking up in the middle of the night everynight and wanting to

> eat. What will help make him full prior to going to bed?

> Thanks, Cindy

Please see " Yeast and SCD " at

http://health.groups.yahoo.com/group/pecanbread/files/

If you need prescription antifungals the doctor may prescribe

Nystatin (ask for it without sugar or illegals) or Diflucan.

What foods is he eating? Are his fruits and veggies peeled and

cooked?

Sheila, SCD 2/01, UC 22yrs

mom of and

[Guest guest]

Hi Cindy,

I just discovered after making my first batch of SCD yogurt that it

kept me full longer than with the other SCD stuff I'm eating. I

intentionally made it with half-and-half so that it would be

thicker. It's pretty high in fat, and the fat content is what's

keeping me feeling fuller longer. So, if you can feed your son more

fat, that might keep him fuller longer.

You might want to try making the SCD yogurt with half-and-half. I

guess you could make it with cream if you really want the fat, but

the half-and-half seem plenty rich for me, at least. I made the

first batch in my oven as I didn't want to invest in a yogurt maker

right away. It wasn't as difficult to control the temperature as I

thought it would be, and my yogurt turned out great.

Claire

>

> I have read several times that after a month you can usually tell

if

> the diet is working. We have been doing this for three weeks and I

am

> starting to doubt my sanity. This evening Kasam has been more

hyper

> than he has for a very long time, jumping on the bed, knocking

chairs

> over, running, uncontrolled laughing, screaming, and trying to bite

> (not just me, but also the cat numerous times). He is not in the

same

> world as me tonight. I started very small amounts of nut flour in

> pancakes today. Is this what is causing these behaviors? I have

> noticed little improvements in the past three weeks; however, the

> negatives are becoming more than I can handle. We have only slept

a

> maximum of seven nights in the past three weeks, I never have time

to

> sit down due to his constant hunger and fixing him something to

eat.

> He wakes up crying in the night because he is so hungry. This is

way

> far from where we had gotten prior to the diet. Is this diet

> successful for everyone? As a mom I truly feel there is something

> else going on that I am not catching. Any ideas?

> Thanks, Cindy, mom of Kasam 4 1/2 ASD, SCD 3 weeks

>