Re: First morning!

[Guest guest]

On Mon, 30 Jul 2001 09:50:43 -0400 " Clevermoms.com "

writes:

> Hello everyone!

Hi!

I

> am

> wondering, however, how long it will take before my kids are eating

> happily

> without complaint

About as long as it takes you to find a couple of " great find " recipes,

which this group can help you with! (I'm pretty new myself, and am still

in the recipe COPYING phase, and have only tried a few!) Then your kids

will surprise you with something like mine said to me a couple times:

" Mommy!!!!! This is the best _______ I ever had. Can we have this EVERY

night???? " Then they're hooked. Really, I think it's that simple. I've

only been dong this about 8 weeks, and after the first couple weeks, it

was fine all the way around. Good luck!

has anyone started this diet with a 6

> year old,

> who follows it when he is out of the house (school...)

No...but I'm about to. In two weeks! Lots of ideas out there...I think

I saw some in ' book Special Diets for Special Kids, which I

own.

One of the best ideas I saw is something like a prebaked potato with gfcf

margarine tucked into a thermos, for a fun and healthy lunch. Also, I

intend to send out (similar to) ' suggested letter to teachers,

found in her book.

P.S. What's your website about? (I don't go online very much)

> http://www.clevermoms.com

>

Alison

[Guest guest]

On Mon, 30 Jul 2001 17:07:07 -0400 " Toby Mijolovic "

writes:

> Hello. My name is Toby

Hi, Toby.

He never really cried which

> is my

> fault because I never really let him, I always just gave him

> everything he

> needed and wanted without him having to ask for it.

You sound like a wonderful mother.

> Sometimes I feel as if I believe the diagnosis

He does sound a lot like my son at that age. Very much. My NONMEDICAL

gut instinct is that the diagnosis may be correct, even though I agree it

was arrived at much too quickly!!!!

makes eye

> contact with

> my husband and myself

Mine does, too, but the other stuff was there....opening and closing,

sometimes " zoning out " , and facination with minute details of things. I

remember once when he was quite young, perhaps the age of your son, he

found a tiny speck on his tray and reached to remove it. There was a

bunch of large food items on the tray. I didn't think much of it at the

time, and yet I noticed.

I have heard a

> lot about

> the diet and would like to try to take out the dairy products first,

> but I

> just dont know how to go about starting this.

Start with the gfcfdiet.com website, and perhaps Seroussi's book

(which I have not purchased myself, but everyone keeps mentioning it, so

it must be good!). I forget the exact title....Unlocking the Mysteries

of Autism and Pervasive Developmental Disorders, I believe. Also,

' Special Diets for Special Kids (I have this one...it's

great....haven't waded through it all myself, yet).

If anyone can give me any info on

> PDD,

> the usual diagnosing process, the treatments

Someone very recently had a great post answering all these questions. I

forget who it was. (,, ????). Anway, it would have a

message title of NEED HELP...it was from a newcomer. So you could check

the archives of the gfcf Kids site.

Well, I found one for you, myself. From one of the TWO 's who write

in frequently! (I didn't even catch on that there were two until I

scanned all my saved files! ))

___________________________________________________

--------- Forwarded message ----------

To: " 'GFCFKids ' " <GFCFKids >

Date: Wed, 11 Jul 2001 23:43:15 -0700

Subject: RE: New and need support - PHENOLS INFO

Message-ID: <B02560D1B30AD411927C0008C7F36FBB84E7E5@mail>

A couple of things (OK 5!!):

1) Read the book " Unraveling the Mystery of Autism " by Karyn Seroussi.

This book is a great resource and can point out some answers to your

questions for both you and your husband re: diet, medical intervention.

It

has helped me a great deal. If you had to buy ONE book (which I have 58

and

growing daily it seems!) this is it.

2) The Gluten free / casein free diet only works when it is 100% . Being

95% on the diet is not effective at all and can not yield positive

results.

3) Night time laughing for us was Phenols (SEE LONG NOTE AT THE END OF

THIS

EMAIL ON PHENOLS)

4) I have worked with about 100 kids with autism and on this diet...

when

they self limit and have a limited diet, they typically respond well to a

GF

CF diet. It took my son about 2 months to adjust at just under 3 years

of

age. Now he has more variety and eats very healthy... much better than

the

cruddy food he ate before. For some inspiration, you may want to read

the

SUCCESS STORIES on the www.gfcfdiet.com web site. There are some

incredible

stories, ideas and why the diet works for some.

NOTE: If the child keeps getting gluten, even in small amounts, the

withdrawal period lasts longer. Get rid of the gluten to give it a real

try. It is hard, but there are thousands of families doing it. You are

not

alone.

5) The GF CF Diet is not for everyone. But you will never know unless

you

try 100%. The minimum " try " time is 3 months. Many doctors say it must

be

a one year trial.

I wish you all the best in your decision. This is a tough one, but now

the

diet is 2nd nature to our family and our sons health, success and good

behaviors depend on this diet.

A jeffs mom

___________________________________________

Good luck, and welcome!

Alison

Mom to , autistic, age 8; , NT, age 7; Isaac, NT, age 4

, NT, age 2

" Surviving " gfcf by His grace

[Guest guest]

> Truthfully going cold turkey gfcf is very hard

We did choose to do that, and I have four unruly kids (ha) so it can be

done! You can get really excited about making the biggest difference

possible all at once - that's what motivated me. And within a few days

he was saying a couple new words.

But you can do it gradually, too. Just wanted to encourage you that you

CAN do it. I cried the first few days, but then life went on, and so did

I! Enlist the help of friends and family and church members, if

applicable, as MUCH as you can. Tell them you are very stressed out

over this and you need help (if in fact you are stressed!). Many people

responded incredibly to our situation. Some gave us money for the

expensive new foods (!) Others offered to babysit free, during the day,

so I could " read labels " , without being badgered by the kids! Others

came over to babysit at night for extra date nights out with my husband.

I couldn't have done it without any or these people, and without all the

great " helpers " on this site, too! )

I also wanted to agree with F that with all those ear infections,

I'm sure his immune system has suffered (from the frequent antibiotic

use). My son got a million of those, too, as a baby, and even an older

child.

Again, best wishes and hang in there!

Alison

Mom to , autistic, age 8; , NT, age 7; Isaac, NT, age 4

, NT, age 2

" Surviving " gfcf by His grace

[Guest guest]

>Why I didnt pick up on that in the

>office is beyond me. We were also very bothered by the fact that she

>diagnosed him in 10 minutes!

It is very possible to diagnose a child in 10 minutes, especially when you are a

doctor that specalizes in development, and see autistic kids daily.

>This was all because he wouldnt look at her

>she said. He does not do any stimming, toe walking, or other apparent

>behaviors. was always an easy baby, he never cried much and was

>never very animated when he was little. He never really cried which is my

>fault because I never really let him, I always just gave him everything he

>needed and wanted without him having to ask for it.

You've just described my son to a " T " . He still does not exhibit any real

concrete noticeable autistic characteristics, yet he is on the spectrum, just

mildly so.

> The reason we took him

>for the evaluation in the first place was because he had about 5-6 words

>around 11 months, and then lost all his language shortly after his 1st

>birthday. He does not point, he hand leads and brings me things he wants or

>needs. He suffered from 5 ear infection from about 9-11 and half months of

>age, and has been on loads of antibiotics. We have had his hearing checked

>several times and it was good. He has had fluid in his ears for a while, it

>goes in and out and we still talk about tubes with the ENT, we will see in

>the winter months if the infections come back and then decide on the tubes.

Going dairy free will most likely alleviate the ear problems. I wanted to also

note your comment on hand leading. This is a very prominate trait in autistic

kids. Pointing is a babies first form of communication and it usually develops

by 9 months. When it doesn't, a child should be watched for signs of

developmental trouble. Hand leading is a very ineffective form of

communication, but it can be expanded upon. This is the point when you need to

start a behavioral program to address this and other areas of concern. My son

hand lead, and it helped tremendously to expand his use of language. He is now

5.2 and age appropriate for language. He still is very immature, but I'm more

than pleased over his progress.

>He also seemed to be less affectionate with my parents at times too, and he

>doesnt care to socialize with children his age, he will play along side

>them, but not with them. Some other things that made me believe things were

>not quite right was sometimes he seems to be in a daze, this is usually

>while the tv is on, but sometimes when he is playing he will just stare. I

>can easily bring him out of it by calling his name or touching him. He also

>had this " obsession " with opening and closing things for a while, it stopped

>about a month ago. He recently developed an affinity for cars, he loves to

>walk around them and touch the keyholes, and find the license plates and

>seems to really stare at them. I can take him away without a fit, but he

>usually chooses to go back and look at the cars again if he has the chance.

Again, you are describing many characteristics of autism. Yes, they are more

subtle, but typically developing children don't do these things. I have an

older son and a younger daughter, and the difference is quite clear.

>Sometimes I feel as if I believe the diagnosis, and somedays I think no way

>is there anything wrong with my child other than a speech delay. He is a

>very loving little boy, he gives hugs and kisses, and makes eye contact with

>my husband and myself wonderfully, and other people if they have something

>he is interested in. I just dont know what to do.

It's hard coming to terms with the diagnosis, but remember to think more about

getting your son better and addressing areas of concern, rather than stewing

over is he or isn't he. Obviously, something is wrong or you wouldn't be here,

or going to specialists. You are most fortunate to be getting a diagnosis so

early. My son's autism was so mild that it when undiagnosed until 3.4 years of

age. I started searching for answers at 15 months. No one felt he was on the

spectrum but me!! It was very frustrating. I finally took things into my own

hands and said to heck with everyone else, including my husband. He now

realizes how wrong he was. We all go through the denial stage. I went back and

forth all the time. Try not focusing on the label so much. However, seeking

treatment geared towards autistic kids won't hurt him at all. You are simply

playing it safe.

>I have heard a lot about

>he diet and would like to try to take out the dairy products first, but I

>just dont know how to go about starting this. Basically everything my son

>eats contains gluten, and he still drinks about 3 bottles a day of cows

>milk, and is lactose intollerant. If anyone can give me any info on PDD,

>the usual diagnosing process, the treatments, how to impliment the diet, or

>any info that can help us we would greatly appreciate it.

Start by using the gfcfdiet list of acceptable and nonacceptable foods. I

printed it out and put it in a binder. It went to the store with me, and was

basically my bible for months. Try the diet, and stick with it at least 6

months. I truly believe you will be amazed at the results, especially given

your son's age. My son started the diet at 3, and is still on it. I was more

than pleased with the results. I recently had him eval'd and he no longer

qualifies for the autism label under the DSM-IV guidelines. Again, he was much

like your son, mildly affected and considered PDD. I still believe he's on the

spectrum, because he doesn't always get the social aspects of life. He is very

much a self centered individual and I would probably classify him as Asperger's.

By the way, my son never lost and regained speech. By 18 months he had a vocab

of 10 words, and by 2 he could recite the alphabet forwards and backwards. He

knew how to count to 50 and recognized numbers to 50. He also knew his colors.

By 2 he began to label nouns. His language merely developed slowly and oddly.

> I would like to

>know what milk substitute taste the most like milk. What will I feed

> on a daily basis? He usally eats waffles for breakfast, soup for

>lunch, and chicken nuggest, pasta, or whatever we are having for dinner.

>Are there still many things that I can buy him in the regular grocery store?

> Will I have to bake everything from scratch? I am willing to do whatever

I> have to to make my sons life as fruitful as possible, whatever it takes

>for my son to be happy and healthy. Thank you for taking the time to read

>this lengthy letter.

You will have to replicate the nuggets, but you can buy gfcf waffles and pasta.

As far as milk goes, my son never took to any of them. I like Dari Free potato

milk the best, but I only use it for baking and cooking. This diet is easier to

do, if you cook mainly from scratch. It takes some getting use to, but you will

be a pro in no time. Start small and remove the obvious dairy culprits first;

ice cream, cheese, milk, etc. After a couple of weeks move on to the more

hidden dairy offenders. After you've removed those move on to obvious gluten

offenders. After two weeks take away the hidden sources of gluten. Stick to

scratch cooking, and the diet will be much easier. I bake large loads a foods

and freeze tons of the stuff. I freeze; nuggets, pancakes, waffles, pasta,

muffins, cookies, pizzas, pizza crusts, cupcakes. It makes things much easier.

Good luck. You've come to the right place, and you are taking the right steps.

Trust your mommy gut on the autism, and go with it. I did, and I've never

regreted it. In fact, it was my release from the sleepless nights, and the

tormented soul searching.

a - Peoria Illinois mom to Alec 7 (TODAY!!!!!), 5.2 (ASD),

3.5Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Dear a:

It has been two months since my son (2.5) was diagnosed with

PDD-NOS. He is now completely GFCF and is receiving 40 hours per week

of ABA therapy. We have seen unquestionable improvement.

My younger son, Ben (1.5), Thank G-d has reached his milestones. Even

though suffered from late onset Autism, his development

compared to his brothers is night-and-day. An hour does not go by

that I do not fear he will regress. My wife and I have come to the

conclusion that nothing could be more detrimental for Ben then for us

to incorrectly label him too. The fact is that certain children miss

milestones, some children toe walk, some children are shy.... each

symptom of autism is not necessarily AUTISTIC in it of itself. The

incidence of a high number of these symptoms should definitely be

looked at by a Neurologist, Psychiatrist... especially when a child

has affected siblings. However it is important to realize that There

is a 3 to 8% risk of recurrence in families with one affected child;

statistically very unlikely.

My point is that every child id different. No competent physician

would label in 10 minutes. Few competent physicians will label

without the counsel of other physicians (Psychologist, Neurologist...)

There is a long road ahead for patients and caretakers of children

with ASD's. The only way to properly navigate that road is with

information and patience; lots of it. I have spent more then 250

hours researching all aspects of this syndrome, and I am still at the

tip of the iceberg.

I wish much luck to all readers of this forum.

Danny