Desperate plea...how do you do this and stay sane?

September 4, 2006

How do you do it? My son is 4-ASD We are on week 3 of the diet. First

two, I cut out starch and grain, third week, off all raw fruits and

veggies and starting intro diet. He is more autistic than ever,

stimmy, laughing to himself, making circles in the air with his hands.

I feel like he is slipping away,I am on the pier and thrown him a life

preserver, but hes still drowning and I cant help him.When does the

good stuff start happening? When can I feel good about the decision I

have made? I really need some good positive energy because we are all

sinking here and my husband and parents think I am starving him to

death. He refuses all veggies now and will not eat ANY cooked fruit.

Someone please tell me how you do this?

September 4, 2006

<<When does the good stuff start happening? When can I feel good about the

decision I

have made? I really need some good positive energy because we are all

sinking here and my husband and parents think I am starving him to

death. He refuses all veggies now and will not eat ANY cooked fruit.

Someone please tell me how you do this? >>

....

I'm posting this response that I also just sent to you privately.....but first,

To everyone else: Is there ANYONE out there in the Chicago area that might be

able to connect with ... call her, maybe meet in person?? I wish I wasn't

on the west coast... I'd drive over myself! PLEASE step up.... someone. They

really need help.

Here's the message I just sent off-list:

-----------

,

You asked:

<<Could he be allergic? Or is the die off causing this. >>

No, I don't think he's allergic. I think he just doesn't feel good. It DOES

sound like typical die-off... and it really can be very rough for some kids. I

can't say exactly how long, but typically about a week, maybe longer. ?? It

depends, because each kid is different. Depends on how badly out of whack his

gut was.

Honestly, when a kid has a very damaged gut, you *might* see some food

sensitivities mixed in with die-off symptoms, but that really shouldn't be the

case except with foods you already knew he was reacting to.

I know you're really feeling stressed right now. In part, some kids really do

pick up on the anxious feelings of the parents ...so be sure you're not passing

that along to him when it comes to trying to get him to eat. They are so

sensitive to our moods and feelings. You've gotta have a variety of things

available to him, and just try to maybe offer a mini-meal about every two hours

for a few days. If he even takes two bites, that would be great.

<<This just doesn't seem right. And his Autistic behavior is worse than ever. >>

I know that you did this diet to " make him better " , not worse.... so it's REALLY

hard to see this happening, and accept it as being what is supposed to happen. I

honestly feel that many, many parents start SCD not expecting this at all....

and maybe we don't stress this enough in the information on the website, because

it comes as a surprise to a lot of parents.

But... (forgive me if I'm repeating myself).... when you think about the premise

behind this diet... that the gut is damaged and leaky, causing malabsorbtion of

nutrients, impairing the immune system, AND that the overgrowth of bad bacteria

is constantly excreting toxic waste products that directly causes what we see as

" autistic behaviors " .... this is what the premise of SCD for autism is.

It only stands to reason that those very same bacteria, when they are dying, are

going to give off those SAME TOXIC WASTE PRODUCTS (which are nasty chemicals,

really).... only in far BIGGER amounts, while they are dying. It only makes

sense then, that the autistic behaviors will be worse... for a time.... until

the bad guys have bitten the dust and moved on out. I know I explained this to

you before.... but just keep re-reading it.

I just want you to know that this is logical.... and to be expected... and while

it IS unpleasant, it is something many, MANY other parents have gone through.

Right now, it seems like this is going to go on forever and you're about to lose

your mind, I know. I wish I could pop over there and sit with you.... help make

it all better. I would if I were closer!

*First question I have is..... why are you going with blueberries? Is this a

favorite of his? Are you cooking them first and straining out all the skins and

seeds? You shouldn't just puree raw or frozen blueberries. The skins and seeds

are not for beginners, which makes blueberries a tough choice for now.

*Next question..... are you doing the epsom salts baths??

*Next question..... are you using an acidophilus supplement?? I know I've asked

this before, but you have not replied.

I see that he IS eating..... I mean, I know it isn't the variety of stuff we'd

like to see, but he is eating something. He ate the chicken and one pancake

yesterday... and a popsicle. Today is not over yet.

I would rather you switched to some other type of fruit for the popsicles....

maybe a ripe peach, peeled cooked and pureed. Then if he has to have the

blue/purple color, you could cook the blueberries and strain them really well...

but those tiny seed would be irritating to his gut right now, so we really need

to get them all out... so use a fine mesh strainer.

<<I feel like a horrible mom starving my child.I don't want to give up,

but I can see why people do>>

You're not a horrible mom!! I know you feel that way when your child feels so

rotten.... but PLEASE don't give up. You've started this process... for HIS

SAKE.... don't give up now! In fact, if you did, you might cause more harm than

good, because the bacteria that are still hanging on... that haven't quite died

yet.... would only become that much stronger and resistant to leaving the body

later on if they ended up getting some of their favorite foods at this point.

They are still very much CRAVING those foods... and it is THEM who want you to

give up on this diet more than anyone else! They still want to control your

child's body! Don't give in to them!!

<<This is worse than any treatment he has gone

through....nystatin, gfcf,yeast free. I am so afraid I am doing this wrong. >>

Think this through.... nystatin was an anti-fungal. It works on yeast only....

not on the bacteria. Nystatin has a really bad track record of killing yeast

WHILE YOU TAKE IT, but then letting it bounce back as soon as you stop. And

especially if there are still sugars and starches in the diet.

Then, GF/CF does NOT typically kill off any yeast or bacteria. ALL GF/CF does is

take out gluten and casein, because those proteins are the ones that leak into

the child's bloodstream and cause the icky behaviors.... but the only reason

they are able to do this is that the GUT IS LEAKY!! GF/CF does NOT REPAIR THE

LEAKY GUT! Plus, it doesn't take out ALL forms of gluten.... only the most

typical ones. A lot of formerly GF/CF parents are shocked to learn this. In

fact, GF/CF makes the situation worse because you end up using a lot of rice and

other starches which feed the bacterial colonies that have their roots dug DEEP

into the gut wall.... and which are CREATING the tiny perforations in that gut

tissue.

Next, the yeast free diet, like Nystatin, also does NOT address the bacteria....

and from what I've learned about SCD, yeast tends to overgrow when there is an

overgrowth of bad bacteria in the gut.... the two go hand in hand.

Anyway, it doesn't surprise me that what you're seeing now is " worse " than what

you ever saw with those approaches, because I doubt they were ever very

effective! What you're seeing now is the diet WORKING.... I know this is hard to

wrap your mind around.... but it truly is working.

<<Im sorry, it's been a really BAD couple of days since I removed fruit and

Nut flour. >>

OK.... I'm confused again. You said you've removed fruit? But.... you've given

him blueberries? Right? Removed what fruit? I'm not sure why. I remember you

saying that you didn't want to give him bananas because he reacts to them or

something. But, you removed ALL fruit? Why?

You should be able to give him applesauce, pearsauce, cooked peaches, etc.

Now, you removed nut flour because you thought it was causing a problem? Please

remind me.... because I thought I had saved all your messages but now can't find

them all.

Why are you not using any nuts? I would like to see him be able to have the

peanut butter brownies or something. I did suggest those before, didn't I?

I really wouldn't worry so much right now about keeping out certain foods for

other reasons.... I mean, obviously you don't want to do dairy, I know that.....

but I would keep all the other legal SCD foods that are appropriate for this

stage as options.

Take a deep breath.... and do the best you can to make a variety of different

things that he can try..... but don't make yourself crazy. Don't let him see you

getting all super-stressed..... try to stay calm and tell him it's going to be

okay. If he eats even one bite of something, tell him that's fine.... that he

can have more later. Keep a positive, calm mood going.... because if YOU are

feeling at your wits end, and I know you are.... but you SHOW that to him.... he

will pick up on it.

DO THE EPSOM SALTS BATHS.... they REALLY help!!!

If worse comes to worse, a few bites of a peeled raw apple would not be the end

of the world.... that would be better than going off the diet altogether.

Generally, he really should stick to all cooked.... but if you just desperately

need him to eat something, go ahead with just a little of that. Pear would be

better.

REMEMBER.... that as those bacteria die, they leave behind very fresh, new,

tender tissue underneath where they were attached. For that reason, you need to

try to stay with foods that are EASY TO DIGEST.... making it as easy on his gut

as possible.

Stay calm.... with every single thing he refuses, just say " that's okay " ...

we'll try again later. No problem. Just comfort him... or distract him.... in

any way you know how.

Remember to BREATHE...... and know that you are doing the right thing for him.

If you need to call me, you can.... I know I'm not anywhere near you (I'm in

Washington state), but I am open to that if you just need to talk to someone.

Patti

Desperate plea...how do you do this and stay sane?

How do you do it? My son is 4-ASD We are on week 3 of the diet. First

two, I cut out starch and grain, third week, off all raw fruits and

veggies and starting intro diet. He is more autistic than ever,

stimmy, laughing to himself, making circles in the air with his hands.

I feel like he is slipping away,I am on the pier and thrown him a life

preserver, but hes still drowning and I cant help him.

September 4, 2006

Yes, Patti,

I will send her some SCD Pals that have been on the SCDiet over a year in the

IL area and a doctor.

Thank you for letting me know where she lives to be able to help.

Loving Care, Grammy Gay

Patti wrote:

<<When does the good stuff start happening? When can I feel good about

the decision I