Re: where do we start??? information overload!

[Guest guest]

Toby -

I know what it feels like in the beginning - you want to start

everything at once and you are totally overwhelmed with information

on what you should be doing.

We did the diet without any testing - we were in too much of a hurry

to wait and we saw success so we felt like we didn't need to test. We

tested later on to fine tune things. We did things a step at a time

and took notes. We did just what you did by removing milk first and

then tackling wheat. It takes a while to get it all out and sometimes

we slip up, but we are always moving forward.

I think it is great that you got a diagnosis at 19 months! That gives

you a great edge - time. Also getting started on an intensive

behavioral intervention right away is also excellent. I think that

starting with the 4 hours a week to get him used to it, but

definitely go up to 25 as soon as he is ready. Also, try not to loose

the speech when you do. Speech therapists are working on different

things than ABA therapists and your son will need both.

We are currently working with a doctor in Florida - even though we

live in California. Dr. Jerry Kartzinel who is part of the Good News

Doctor practice in Palm Bay. Dr. Jeff Bradstreet is head of that

practice. Their web site is www.gnd.org (If your are a recovering

Catholic like me, don't be put off by the biblical images on the

site, they don't try to convert you, they are just deeply Christian

and I think that works well for the possitive thinking aspect of this

whole process.)

I looked into a lot of stuff that Karyn mentions in her book and then

some stuff I forgot would get mentioned on one of these lists and I

would look into at that time.

A bit of advice - take video tape of your child so you can look back

on it and see how far you have come. This helps when you have had a

bad day. Try to keep a journal so that you jot down little

breakthroughs as they occur or little set backs - this will help you

to track anything that may be helping, or hindering your little guy.

Expect resistance to change and withdrawal from gluten. We ended up

in the ER one night because my son woke up screaming and kept

screaming for over an hour and then mysteriously stopped. The ER said

to give him antibiotics just in case - we didn't. This was a

withdrawal from gluten. He was halucinating and screaming and

something we couldn't see - it was freaky, but he made a leap in

functioning after that, like his system was clearing up.

Also, don't let professionals (particularly the school district) tell

you that your child isn't that badly affected so he doesn't need that

much in the way of services - he does! We delayed getting a 40 hour a

week one-on-one because we believed that this was for extreme cases

and our boy wasn't that bad - that was false comfort, he is doing so

much better with his 40 hour program I could kick myself for not

starting it right away. Also, what I tell new parents to do is hire

an Advocate - we got what we needed without too much of a fight when

we had an advocate sitting next to us at these meetings. We got our

recommendation for a good advocate at a parental support group

meeting - a fantastic resource for information about your local area

and the services available.

Last bit of advice - keep fighting and trust your gut.

Hang in there.

Moira

mom to Vico (4 ASD) and Culzean (15 months)

>

>

>

> Hi all. I have just read Karyn Seroussi's book--WOW!! That book

gave me so

> much hope, but I am left feeling quite confused and overwhelmed.

My son is

> 19 months and was diagnosed with PDD 2 weeks ago. He has started

an ABA

> school, but its only for 4 hours a week right now; he will go for

25 hours

> starting in January. He has received speech therapy in our home

for 2

> months now for 2 hours a week, and will continue this until ABA

starts full

> time. The developmental ped recommended atleast 20 hours a week of

intense

> therapy for him at this time. I am thinking of trying to take

classes to

> learn to do the ABA myself at home, but I have no idea where I can

find

> these classes. (we live in NY, between Albany and Syracuse). I

read so

> much about all these different therapies from the diet, (we have

started the

> dairy free a week ago, and plan to start the gluten free this week)

to the

> secretin, the nystatin, seeing a GI specialist. I just dont know

what to do

> first, what would be best for my son, and how to test for these

problems

> such as candida and peptide levels???? Anyone with help, thank you

so much.

> I would just like to know some parents stories about what

therapies have

> worked for them, and how to start all of this. My sons

pediatrician is a

> bit skeptical (and still does not believe that the diagnosis is

correct),

> but compliant with basically most things I suggest. There are no

DAN

> doctors in our area either Thanks again

>

> Toby in NY, Mom to , 19 months PDD

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

Moira;

That was an excellent posting and you hit the nail on the head!! We to

felt comfort in the fact that the school district felt our son needed

only a short program a not a full blown ABA class. Now we are sorry we

did not act sooner and are getting the full day program starting next

month.

Toby;

I am curious what your son's symptons were at 19 months. We really did

not not know until ~32 months.

Regards,

Greg Fanelli

Father to:

Nicky 3.2 ASD

age 9 NT

Dana age 13 NT

> >

> >

> >

> > Hi all. I have just read Karyn Seroussi's book--WOW!! That book

> gave me so

> > much hope, but I am left feeling quite confused and overwhelmed.

> My son is

> > 19 months and was diagnosed with PDD 2 weeks ago. He has started

> an ABA

> > school, but its only for 4 hours a week right now; he will go for

> 25 hours

> > starting in January. He has received speech therapy in our home

> for 2

> > months now for 2 hours a week, and will continue this until ABA

> starts full

> > time. The developmental ped recommended atleast 20 hours a week

of

> intense

> > therapy for him at this time. I am thinking of trying to take

> classes to

> > learn to do the ABA myself at home, but I have no idea where I can

> find

> > these classes. (we live in NY, between Albany and Syracuse). I

> read so

> > much about all these different therapies from the diet, (we have

> started the

> > dairy free a week ago, and plan to start the gluten free this

week)

> to the

> > secretin, the nystatin, seeing a GI specialist. I just dont know

> what to do

> > first, what would be best for my son, and how to test for these

> problems

> > such as candida and peptide levels???? Anyone with help, thank

you

> so much.

> > I would just like to know some parents stories about what

> therapies have

> > worked for them, and how to start all of this. My sons

> pediatrician is a

> > bit skeptical (and still does not believe that the diagnosis is

> correct),

> > but compliant with basically most things I suggest. There are no

> DAN

> > doctors in our area either Thanks again

> >

> > Toby in NY, Mom to , 19 months PDD

> >

> >

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp

[Guest guest]

A good book to read is " Special Diets for Special Kids " by .

It has alot of great recipes in it, explains how to start the diet and

explains all about the diet, cooking, etc. It does mention supplements

and tests, but again this is a personal decision, I don't do supps. or

all these fancy tests, but the allergy test./

OK, my son has been on this diet for a little over 15 months and doing

great. I advise to first have him allergy tested for foods so that you

are not replacing the gluten and casein with other offending foods.

I had IgE blood tests run. I know there is another kind and I really

don't know what the difference is, sorry. They took vials from a tiny

butterfly into LJ. He got tested for

eggwhite corn

orange

beef pork

shrimp

tomato barley

carrot

chicken codfish

crab

cow milk oat

peanut

rye soybean

strawberry

tuna bakers yeast

wheat

cashews chocolate

almond

carob bean rice

grape

sweet potato white potato

banana

pear

He also got tested for some environmental things (dust, mold, duck,

feathers, etc) and he came up allergic to cats and dogs.

My son LJ is on Medicaid. I took him to a regular allergist who wrote a

prescription for me to go across the street to the lab inside the

hospital and they ran the tests and sent the results to the allergist.

I eliminated ALL foods that he showed even the slightest reaction to,

thus allowing for the GFCF diet to work to its fullest potential.

Good luck. I tend to stay clear of all these

other fancy tests and meds, etc.. I didn't do any testing with my son

prior to or now other than allergy testing. He gets a complete physical

every year witha complete blood work done and other then that I stay

clear of all, except for a 100% GFCF diet, no artificial colors or

flavors and ne preservatives.

But I would first take it slow and remove the casein first, then the

gluten.

There are many other recipes once you begin the people on the list here

will help you with, but first get the book and do the allergy testing.

My son is now reading, extremely verbal, pretty good eye contact, is not

so easily frustrated anymore, calmer (use to run from room to room and

back again), able and wanting to learn, absorbs and retains what he is

taught. Along with this diet I do alot of work with LJ besides his full

day at school. He is in an ABA program at school, but will be

transitioning out of ABA after school starts in Sept.. He is 6 1/2 years

old and has been in ABA since 23 months of age and now is doing so great

he is ready to move on.

As far as mailorder and web order I am a great fan of Miss Robens at

www.missroben.com and you can call them at 1-800-0083 for a catalog. I

like the catalog and to order by phone so that if I have questions they

are very helpful and nice. They have snacks, cake and cookie mixes,

condiments, flours, BOOKS (they have " Special Diets for........... "

too),pastas, soups, cereals, etc..

As far as packaged luncheon meats I only buy Applegate farms or Shelton

brands - both are at my HFS. Also Trader Joes I know has the Applegate

Farms (don't know if they have Sheltons). I buy these brands because

they have no preservatives or additives.

Fish is ok on the GFCF diet. Many avoid it or limit it due to the

mercury issue. Thats a personal choice. We eat fish at least 2x a

month. If you are buying tuna fish youhave to make sure you don't buy a

brand that has casein in it - many contain it.

I make my own breading crumbs. You probably will buy alot of different

breads and cereals trying to find ones your child likes - well don't

throw out the unliked ones, put them in the blender along with some gfcf

rice crackers and you now have bread crumbs. You can also buy some

premade ones through Miss Robens.

For oils I use olive oil, and also I buy Spectrums shortening at my HFS,

or else I use corn oil.

For potato chips I buy UTZ available in regular supermarkets. Only the

plain and rippled, don't buy the flavored ones.

Trader Joes has many GFCF chips (tortilla ones too). They have the list

at there store as to what ones to buy. There is a whole gluten free

foods list they have. Then you just have to check ingredients for dairy.

They have GF waffles, vitamins, sauces, tuna, pastas, milk substitutes,

cereal, etc

Hope this helps some. Everyone on the list here is willing to help.

on Long Island New York

*

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