Re: discouraged need help

[Guest guest]

,

I just wanted to offer some words of encouragement

from one warrior mom to another. The process of

healing the kids is a slow one. While many kids can

run with a " magic bullet " , there are five times as

many that experience that one step forward, two

steps back regression. Like you, I am blessed with the happy

kid - and let me tell you, I don't take that blessing

lightly. For us, language is the ultimate frustration,

been at this almost 5 yrs now and my son is still

non verbal.

Gluten takes a long time to leave the body, months actually,

and the healing is ongoing in the gut for years.Do not be anxious

about testing if you can't afford it right now, just work on what you

can. Are you working with a DAN, are there other treatments

you have researched that you want to implement? It is all

very overwhelming, but know that as you systematically

work through it, our support is here for you and try not

to stress about it - you are doing a really great thing

for your child!

>

> We have been gfcf free for five weeks now. We were making great

progress. Even tried to say a couple of words. But it seems as if we

are at a stand still or maybe even a little regression. I know we

need the oats test but financially unable until after christmas. I

was hoping may be you guys would have some input i could move on

until then.

>  This is what we are doing now. He takes mb12 shots three times a

week

>                                                multi vitamin

>                                                 clo

>                                               green tea extract

>                                              probiotic

>                                              enzyme

>  My son is four years old weighs 27lbs. We dont have issues with

temperment. We are so lucky in that regard. I hear of others with

those issues. He is alwys happy. He just to me seems a little foggy

again.  Sorry so long but just kind down. Dont want to waste anytime

until i get get some testing done/.  thanks

>

[Guest guest]

Thank you so much for the encouraging words. It just seems some days i get a little overwhelmed. I want to do all i can i dont want to let him down. Just wanted to say thanks. it was much appreciated.

Subject: Re: discouraged need helpTo: mb12 valtrex Date: Wednesday, December 3, 2008, 3:42 PM

, I just wanted to offer some words of encouragementfrom one warrior mom to another. The process ofhealing the kids is a slow one. While many kids canrun with a "magic bullet", there are five times asmany that experience that one step forward, two steps back regression. Like you, I am blessed with the happykid - and let me tell you, I don't take that blessinglightly. For us, language is the ultimate frustration,been at this almost 5 yrs now and my son is stillnon verbal. Gluten takes a long time to leave the body, months actually,and the healing is ongoing in the gut for years.Do not be anxious about testing if you can't afford it right now, just work on what youcan. Are you working with a DAN, are there other treatmentsyou have researched that you want to implement? It is allvery overwhelming, but know that as you systematicallywork through it, our support is here for you

and try notto stress about it - you are doing a really great thingfor your child!>> We have been gfcf free for five weeks now. We were making great progress. Even tried to say a couple of words. But it seems as if we are at a stand still or maybe even a little regression. I know we need the oats test but financially unable until after christmas. I was hoping may be you guys would have some input i could move on until then. > This is what we are doing now. He takes mb12 shots three times a week>

multi vitamin> clo> green tea extract>

probiotic> enzyme> My son is four years old weighs 27lbs. We dont have issues with temperment. We are so lucky in that regard. I hear of others with those issues. He is alwys happy. He just to me seems a little foggy again. Sorry so long but just kind down. Dont want to waste anytime until i get get some testing done/.

thanks>

[Guest guest]

We've been doing biomeds for a year now and my daughter was nonverbal

when we started. She didn't start talking (not well) until about 6

months into biomeds and diet. After a year she is still mostly using

one or two words and her articulation is very poor for the most part.

But lately I am seeing big changes and this is after a year of trial

and error.

It's very up and down and very slow for a lot of kids. We have a very

long way to go, but I can see recovery down the road.

Hang in there, this is probably the hardest thing you will ever do

(aside from childbirth!). I know it's been the hardest thing I've ever

done. It's hard to read stories of kids who immediately respond to

something when yours doesn't, but in time you will see the changes.

My days are good and bad now. I was expecting a lot more after a year,

but after watching old videos I realize how far she's come. Take

videos now if you can, it's amazing to see the changes. You forget

where they started and once you see an old video you will be shocked.

We get so used to the new things that we need reminders.

Keep going Mama!

> >

> > We have been gfcf free for five weeks now. We were making great

> progress. Even tried to say a couple of words. But it seems as if we

> are at a stand still or maybe even a little regression. I know we

> need the oats test but financially unable until after christmas. I

> was hoping may be you guys would have some input i could move on

> until then.

> > This is what we are doing now. He takes mb12 shots three times a

> week

> > multi vitamin

> > clo

> > green tea extract

> > probiotic

> > enzyme

> > My son is four years old weighs 27lbs. We dont have issues with

> temperment. We are so lucky in that regard. I hear of others with

> those issues. He is alwys happy. He just to me seems a little foggy

> again. Sorry so long but just kind down. Dont want to waste anytime

> until i get get some testing done/. thanks

> >

>

[Guest guest]

You will have many of these sessions. Over the years you'll go

through this many times. It's all part of cleansing and developing

new pathways as the body repairs.

It's great you are getting a response. In five weeks we saw

something that most wouldn't have even recognized as progress. My

husband and I knew something was different. We didn't have an

immediate response. We didn't double our language in 2 weeks because

we didn't have any lang to start with. His was all lost at the

regression. Our son was completely in his own world.

What you can do in the meantime is work on diet. GFCF is step

one. You can work to take away gfcf foods that resemble the

standard american diet.

A gfcf chicken nugget for example isn't healthy....it's just less

toxic.

I'd look into SCD or body ecology diets. We had great success with

step by step body ecology diet. I love some SCD recipes though and

often go to pecanbread to find new ideas.

It took me 9 months to go from a basic gfcf diet to eating mostly

vegetables, good fats, minerals, fermented foods, digestable

proteins.

WOW this was much healthier than gfcf cookies, nuggets, and

waffles. He really responded and the fog lifted. This is when our

ABA therapist said " you don't need us anymore. " Of course he still

has delays in social, he missed most of his early development. But

he is very recovered too. We are now using sonrise to address

social milestones and continue to add biomedical.

Best to you

>

> We have been gfcf free for five weeks now. We were making great

progress. Even tried to say a couple of words. But it seems as if we

are at a stand still or maybe even a little regression. I know we

need the oats test but financially unable until after christmas. I

was hoping may be you guys would have some input i could move on

until then.

>  This is what we are doing now. He takes mb12 shots three times a

week

>                                                multi vitamin

>                                                 clo

>                                               green tea extract

>                                              probiotic

>                                              enzyme

>  My son is four years old weighs 27lbs. We dont have issues with

temperment. We are so lucky in that regard. I hear of others with

those issues. He is alwys happy. He just to me seems a little foggy

again.  Sorry so long but just kind down. Dont want to waste anytime

until i get get some testing done/.  thanks

>

[Guest guest]

What enzyme are you using, and how much? He may need more to help

him digest and absorb nutrients. Also, which probiotic and how

much?

If you are at a stand still after a couple weeks of GFCF, I would

suspect that perhaps he is reacting to something still in his diet.

The usual suspects are soy, corn, rice, eggs. If there is one food

in particular that he seems to be eating a lot of, that is usually

the food to suspect. They seem to crave the foods they can't

tolerate. We ran into this problem about 3 weeks into GFCF, but

after removing rice (he was craving his rice milk) we saw huge

improvements again.

HTH,

Sheri

>

> We have been gfcf free for five weeks now. We were making great

progress. Even tried to say a couple of words. But it seems as if we

are at a stand still or maybe even a little regression. I know we

need the oats test but financially unable until after christmas. I

was hoping may be you guys would have some input i could move on

until then.

>  This is what we are doing now. He takes mb12 shots three times a

week

>                                                multi vitamin

>                                                 clo

>                                               green tea extract

>                                              probiotic

>                                              enzyme

>  My son is four years old weighs 27lbs. We dont have issues with

temperment. We are so lucky in that regard. I hear of others with

those issues. He is alwys happy. He just to me seems a little foggy

again.  Sorry so long but just kind down. Dont want to waste anytime

until i get get some testing done/.  thanks

>

[Guest guest]

,

I suggest you read a book or two in the time before your next appointment. I always get fired up and find some new things to try out that helped a kid in the book with a similar symptom as mine. There are some new books out there, too. Some of my favorites are:

Enzymes for Autism by Defelice (2006, second edition)

Recovering Autistic Children by Edelmand & Rimland (from ARI, 2006)

Hope for Children on the Autistic Spectrum by Sally Kirk. (2008)

a book am intrigued with and plan to read is:

Natural Treatments for Tics and Tourette's: A Patient and Family Guide by Sheila (2008, reviewed on ARI website)

sally

To: GFCFKids ; mb12 valtrex Sent: Wednesday, December 3, 2008 8:57:29 AMSubject: discouraged need help

We have been gfcf free for five weeks now. We were making great progress. Even tried to say a couple of words. But it seems as if we are at a stand still or maybe even a little regression. I know we need the oats test but financially unable until after christmas. I was hoping may be you guys would have some input i could move on until then.

This is what we are doing now. He takes mb12 shots three times a week

multi vitamin

clo

green tea extract

probiotic

enzyme

My son is four years old weighs 27lbs. We dont have issues with temperment. We are so lucky in that regard. I hear of others with those issues. He is alwys happy. He just to me seems a little foggy again. Sorry so long but just kind down. Dont want to waste anytime until i get get some testing done/. thanks

[Guest guest]

He is taking probiotic acidolphilus and gluten ease enzyme. Are these okay? I got them at the health food store. Maybe i should have gotten them somewhere like kirkman's I seem to stay confused on which is best. You ask what he is eating. He is eating pizza I make it with gluten casein free crust made with rice flour. spaghetti sauce and sausage. And an occasional waffle. He'll eat chicken. I hide fruit in his waffles. The only thing i see in these may be rice. Thanks for the input and encouragemnt knowing someone is out there helps.

Subject: Re: discouraged need helpTo: mb12 valtrex Date: Thursday, December 4, 2008, 11:47 PM

What enzyme are you using, and how much? He may need more to help him digest and absorb nutrients. Also, which probiotic and how much? If you are at a stand still after a couple weeks of GFCF, I would suspect that perhaps he is reacting to something still in his diet. The usual suspects are soy, corn, rice, eggs. If there is one food in particular that he seems to be eating a lot of, that is usually the food to suspect. They seem to crave the foods they can't tolerate. We ran into this problem about 3 weeks into GFCF, but after removing rice (he was craving his rice milk) we saw huge improvements again. HTH,Sheri>> We have been gfcf free for five weeks now. We were making great progress. Even tried to say

a couple of words. But it seems as if we are at a stand still or maybe even a little regression. I know we need the oats test but financially unable until after christmas. I was hoping may be you guys would have some input i could move on until then. > This is what we are doing now. He takes mb12 shots three times a week> multi vitamin> clo>

green tea extract> probiotic> enzyme> My son is four years old weighs 27lbs. We dont have issues with temperment. We are so lucky in

that regard. I hear of others with those issues. He is alwys happy. He just to me seems a little foggy again. Sorry so long but just kind down. Dont want to waste anytime until i get get some testing done/. thanks>

[Guest guest]

Thank you very much. I went online and ordered recovering autistic children last night. I just finished Children with Starving Brains. It was kind of hard to understand for me.

Subject: Re: discouraged need helpTo: mb12 valtrex Date: Friday, December 5, 2008, 2:44 AM

,

I suggest you read a book or two in the time before your next appointment. I always get fired up and find some new things to try out that helped a kid in the book with a similar symptom as mine. There are some new books out there, too. Some of my favorites are:

Enzymes for Autism by Defelice (2006, second edition)

Recovering Autistic Children by Edelmand & Rimland (from ARI, 2006)

Hope for Children on the Autistic Spectrum by Sally Kirk. (2008)

a book am intrigued with and plan to read is:

Natural Treatments for Tics and Tourette's: A Patient and Family Guide by Sheila (2008, reviewed on ARI website)

sally

From: Hinshaw <hinshaw.linda@ yahoo.com>To: GFCFKids@yahoogroup s.com; mb12 valtrex@ yahoogroups. comSent: Wednesday, December 3, 2008 8:57:29 AMSubject: discouraged need help

We have been gfcf free for five weeks now. We were making great progress. Even tried to say a couple of words. But it seems as if we are at a stand still or maybe even a little regression. I know we need the oats test but financially unable until after christmas. I was hoping may be you guys would have some input i could move on until then.

This is what we are doing now. He takes mb12 shots three times a week

multi vitamin

clo

green tea extract

probiotic

enzyme

My son is four years old weighs 27lbs. We dont have issues with temperment. We are so lucky in that regard. I hear of others with those issues. He is alwys happy. He just to me seems a little foggy again. Sorry so long but just kind down. Dont want to waste anytime until i get get some testing done/. thanks

[Guest guest]

An acidophilus based probiotic should be alright, provided it is

GFCF. Some are cultured on milk and may have some casein in the end

product. Do you know how strong it is? It should list how many CFUs

(colony forming units) somewhere on it. Most of our kids need at

least 20+ billion CFUs per day, but many kids need much more than

that. My kids (ages 2 & 3.5) are taking 70+ billion CFUs daily, and

I know of others whose children are taking more than 100 billion per

day.

GlutenEase does contain DPP-IV, so that's great in case of accidental

infractions or cross contamination. It also contains amylase which

is good at breaking down starches. However, your little guy would

likely benefit from a much broader digestive enzyme that can help

break down proteins and fats as well. The company that makes the

GlutenEase, Enzymedica, also makes a great broad enzymes called

Digest Gold which I know many people use and like. I have also used

Tri-Enza from Houston Nutraceuticals, and Enzym Complete DPP-IV from

Kirkman Labs, and like them both.

I hope this helps a bit,

Sheri

> >

> > We have been gfcf free for five weeks now. We were making great

> progress. Even tried to say a couple of words. But it seems as if

we

> are at a stand still or maybe even a little regression. I know we

> need the oats test but financially unable until after christmas. I

> was hoping may be you guys would have some input i could move on

> until then.

> >  This is what we are doing now. He takes mb12 shots three times a

> week

> >                                                multi vitamin

> >                                                 clo

> >                                               green tea extract

> >                                              probiotic

> >                                              enzyme

> >  My son is four years old weighs 27lbs. We dont have issues with

> temperment. We are so lucky in that regard. I hear of others with

> those issues. He is alwys happy. He just to me seems a little foggy

> again.  Sorry so long but just kind down. Dont want to waste

anytime

> until i get get some testing done/.  thanks

> >

>