New Member

Posted June 23, 2004 · June 23, 2004

Hi Lori,

Welcome!!! I think he should get more than Ix a week speech. I think my son

received 3x week speech at 21 mos.( he's now 41/2 and 4x week speech). I love

the explanation of that they would be therapied out. Not true. Our children

need 1on1 therapy. The more 1 on 1 they get the better. Now the only way they

get therapied out is if the therapist are not good or not doing their job. If

there is a good therapist, the therapy will the best thing the child will get.

sorry on a soap box but I hate the way they spin reasons of why they can't give

children more therapy time.

the testing he gets will get him the proper therapy he deserves. hopefully

good luck and this a great list to get info.

chris

Lori <lebinko@...> wrote:

Hi My name is Lori and I have a 20 month old little boy with

Di syndrome including congenital heart defect and

developmental delays. He is in the early intervention program but

only just started speech therapy.

He says " eow " for the cat, " mama " , and " oom, oom " for car / truck.

He signs about 10-15 words. His receptive language is slightly

delayed but not too far behind. He had nasal regurgitation

(improving tremendously but still occasionally). He can drink from a

straw now :-). When he blows (bubbles, candles, hot food)- he blows

through his nose (which doesn't work- but it's cute).

He doesn't have a label yet- I don't know if he's apraxic or has

VPI. We are taking him to CHOP for a full spectrum evaluation in

August and maybe then we'll have some idea on what to expect long

term.

We've had lots of problems getting speech started here for a couple

of reasons. He qualifies for speech 30 minutes once a week. I think

it is so low due to funding. They are changing the EI program from a

medical model to an educational model starting in July. For this

reason, many ST have left or aren't accepting new patients. I

finally have a therapist- except she's 7 months pregnant. But I'll

take her for as long as I can- and actually she seems rather

competent and encouraging.

Is 30 minutes a week enough? The ST told me there is not much they

can do at this age except expose, model, and play. When he ges a

little older, they can begin more structured therapy. Also he

receives PT and an EI specialized teacher, so we don't want

him " over therapied " . Rather we'll begin more gradually. Is this in

line with what you have been told for a child his age? He's been in

the hospital so much that now we are in catch up mode. I'd like him

to have all the help possible so he can make up for lost time.

Now that I can focus more on 's development instead of just his

health, I look foward to learning how to help him communicate and

process this big new world.

Thank you for listening. Any ideas would be awesome!

Lori

Mother of 4: 12, 10, Ally 5, and my special , 20

months VCFS, HRHS, low immunity, hypocalcemic, hypotonia, chronic

cylothorax, developmental and speech delays, 3 surgeries, 10

hospitalizations, and WALKING everywhere and he's into everything!

Loves music, can clap in time with a song, and loves to " play " the

piano. My little miracle boy!

Posted June 23, 2004 · June 23, 2004

Hi ,

Think 25mg is as high as they allow you to go over here. I am on the same

along with 200mg of Ciclosporin and Indocid.(Rattle, Rattle)

Take care,

Posted June 23, 2004 · June 23, 2004

Hi - I'm a new member. Was diagnosed with Lyme 6 days ago, Still

reeling from the news. My doctor has been suspicious of a Lyme

infection since I started seeing him 3 years ago. We did one lab

test, I can't remember which one, which was negative and went to see

the Doctor's " Lyme Guy " who said " No Lyme " . My doctor kept his Lyme

suspicions in spite of the two negatives. He finally did an Igenex

and lo and behold. After looking at the results - I can't fathom how

to read what they say. Are there any directions to do this posted

anywhere?

We are both resistant to antibiotics, and he is starting me on

Samento. The information I was referred to by someone on another list

really makes the Samento seem like the treatment of choice for me. I

did a search on the archives of this group and there is only one

reference to Samento. Does anyone here take it? It hit me like a ton

of bricks. I had to decrease my starting dosage way down to be able

to stand the herxxing. I'm starting to get a little used to it, but I

only take a half drop per day! It will take a bit for me to build up

the dosage. At least the herxxing shows me that it's working. (Jump,

jump, clap, clap)

I relate to a few of the recent messages I have read so far - the

weight gain in the belly and the cyclic nature of the illness. Both

of which my doctor says are reasons he was so suspicious of Lyme. Not

only is my belly fat, it is also bloated and sticks way out, like I'm

pregnant. This is a hard nut to crack for a person who never weighed

over 115 pounds, ever. I try to eat low carb, but if I don't have

carbs, I get hypoglycemic. I haven't been able to give up pasta, yet,

but I have cut down greatly. (I'm an Italian - my grandmother is

probably rolling in her grave).

I hope I can find hope in this group - right now I feel discouraged

and depressed.

Thanks for listening,

Laureen

Posted June 23, 2004 · June 23, 2004

Hi .....Maybe we share an ancestor. Even here in San Diego, CA I had

to fail on 2 mainline drug therapies before my insurance would cover the

Enbrel and then it only pays 80%. MTX made me sick as a dog and

Sulfasalazine was ineffective. Enbrel has been my miracle drug. I started

Enbrel before it was approved for PA. I was even in remission for over a

year on no drugs at all after using Enbrel for 1.5 years. I was one of

those lucky people that had stunning and immediate relief. I have recently

had to go on Enbrel again but am only doing one injection per week. The

injections are not painful or difficult. Definitely try it if you can. It

could turn your whole life around. In my opinion the sooner you use a

biologic drug in the disease process the better your chance of having a

positive result.

Cheers Ronnie E.

[ ] New member

> Hi all,

>

> I've had PA since I was 22 I'm now 30 been on all sorts of different

medication.

> Started on Indomethicin and codeine it eased the pain but caused me to

have a hyatis hernia. Tried Celebrex, Viox and I'm now on Voltorol which

probably isn't doing my stomach any good.

> Also on MTX, Tramadol and Amiliryptiline. I'm on a high dose of MTX 10

tablets 2.5 once a week (does this seem high, need some advice on that).

> I really want to try Enbrel but don't know if it's available where I live,

I know that a consultant at the local Hospital has his RA patients on it I

live in the North Wales area.

>

> Bye for now

>

Posted June 24, 2004 · June 24, 2004

Laureen wrote:

> We are both resistant to antibiotics, and he is starting me on

> Samento. The information I was referred to by someone on another

list

> really makes the Samento seem like the treatment of choice for me.

I

> did a search on the archives of this group and there is only one

> reference to Samento. Does anyone here take it? It hit me like a

ton

> of bricks. I had to decrease my starting dosage way down to be able

> to stand the herxxing.

Hi,

I take it myself (day 236, 21 drops daily)....

The starting dose should be one drop per day in a pint of filtered

water for the first three days. How did you reduce this? Or did you

start too high? It is recommended that you detox before taking

Samento and modify your diet.

Best wishes

Kezzi. . . (the Samento Kid!!)

The Samento FAQ

http://samento-faq.eu.kz

Posted June 25, 2004 · June 25, 2004

Hi , thanks for the advice and yes my consultant is quite old but I don't

go to him anymore. He put me on MTX without telling me it causes deformities in

childbirth, so obviously I had a second opinion my new consultant is very good.

Yes I did mean Amytriptaline (my spelling ain't so good on these medications).

I take Lo-Sec for the stomach problem it seems to work.

The A is much worse than the P, I only have the P on my scalp I don't have any

side affects from the MTX thankfully, I just don't like being on it for obvious

reasons. The MTX just doesn't seem to be working that's why my mum and I have

been researching Enbrel, the only thing we don't know is that if it's available

for me in my area. I'm tryin to get an appointment at Broadgreen Hospital in

Liverpool as it's a teaching hospital and maybe go on trials fingers crossed.

PS I only live down the road from Ruthin.

z

Posted June 25, 2004 · June 25, 2004

> Hello everyone,

> I have a beautiful 6 yr old little girl. Her name is and she

> is diagnosed with Autism Spectrum Disorder. My husband and I are

> researching some information on chelation treatments. A friend on

> another site told me about this group. I would appreciate any

> information or experiences (positive/negative).

Here are several dozen people's comments on chelation--- mostly

positive, a few negative:

http://home.earthlink.net/~moriam/LOVE_LETTERS.html

good wishes,

Moria

Posted June 29, 2004 · June 29, 2004

Hi and welcome from all us fellow little angels.

Sorry to read about your other health issues. The Arthritis is bad enough

without having to contend with all of that too. Hopefully though reading some

of the posts here will do your heart a bit of good eh?.

Look after yourself,

.

Posted June 29, 2004 · June 29, 2004

laura, sorry to hear about your spat. just remember to take one day at a time.

don't get too discouraged because there is always another day.rachel

laura_thelittleangel <oldham22002@...> wrote:hi there to all

my name is laura from melbourne australia...

i have been having psoriatic arthritis for the past 18 years

i havent been taking much of meds, over the years . panadol and

the odd pain killers for the arthritis... just endured the pain

it started one day in december .. waking up and i couuldnt move for

a month...

just over 10 yrs ago my heart started to collapse on me with leaking

valves... and finally two yrs ago i had open heart surgery..

then the meds started again ... the arthritis was also about more

i started using celebrex..

i am finally seein a rheumatologist next month .. the pain as been

very severe this last month.. pain being every where..

well thats me hope to talk to you out there soon

laura

Posted June 29, 2004 · June 29, 2004

-Welcome,,

Good Luck at your rheum appt. I have a good friend in melbourne. I

live in nebraska, U.S.A. and take remicade...a biologic that i don't

think is given for pa in Australia yet.

Maybe they will start you out with a med called methotrexate.

Marti

-- In , " laura_thelittleangel "

<oldham22002@y...> wrote:

> hi there to all

>

> my name is laura from melbourne australia...

> i have been having psoriatic arthritis for the past 18 years

> i havent been taking much of meds, over the years . panadol and

> the odd pain killers for the arthritis... just endured the pain

>

> it started one day in december .. waking up and i couuldnt move for

> a month...

> just over 10 yrs ago my heart started to collapse on me with

leaking

> valves... and finally two yrs ago i had open heart surgery..

> then the meds started again ... the arthritis was also about more

> i started using celebrex..

>

> i am finally seein a rheumatologist next month .. the pain as

been

> very severe this last month.. pain being every where..

>

> well thats me hope to talk to you out there soon

>

> laura

Posted June 30, 2004 · June 30, 2004

>>>> My name is Ruth and I have 7 children - all of which are on the

autistic spectrum to greater or lesser degrees.

Okay...I am already overwhelmed just thinking about that...

I have 2 kids and it works out.

A lot of food intolerances can be related to leaky gut...which is

related to bacteria or yeast problems. Sounds like that might have

something to do with your sons' situations.

Hopefully, we can streamline the learning curve. I keep a lot of

stuff on enzymes at www.enzymestuff.com. One good way to start is to

read through the links on the left hand side starting at the top

under Enzyme Basics. Topics are arranged in a logical order of

learning. The section titled Related Topics talks about other issues

very common with digestion and nutrition. Lots of nice, cost-

effective ideas there.

Since you are looking at gluten intolerance, consider Peptizyde by

Houston Nutraceuticals at www.houstonni.com. I know it is mentioned

often but it reall is the King of casein and gluten digestion. Other

enzymes help with other foods or aspects of digestion, but Peptizyde

is the proven workhorse for use instead of GFCF diet. Some people

still need such a diet, but most can leave it if they like. Since you

already tried the diet route, this could be the alternative you need.

Then consider a broadspectrum digestive enzyme product for helping

with all over digestion and gut healing. Addressing all foods will

help deplete any food supply that bacteria or yeast may be feeding

on. The ones I like are:

- Zyme Prime from Houston

- Digest Gold from Enzymedica

- Ultra-zyme Plus from Thropps Nutrition

There are many, many average broad-spectrum enzyme products on the

market, but these have repeatedly proven more effective and 'the

cream of the crop'. If you find another product that works for you,

great. This is just to offer a reliable short-cut through the maze of

marketing and so-so products out there.

Now, because the dark circles, giggling, carb-binging, and sleep

problems, it sounds like there might be a bacteria or yeast

problem...or both. The giggling in particular is characteristic of

yeast by-products (alcohol).

For yeast, consider No-Fenol by Houston (or Candidase by Enzymedica).

Combine that with a good yeast killer. If you have a doctor that

prescribes a yeast-killer, that will do. If not, you can use

grapefruit seed extract or oil of oregano from a health food store or

pharmacy. These 2 are herbs sold over the counter. Take the enzymes

and herb between meals whereas you take the other enzymes with meals.

The point of taking enzyme between meals is since there is no food to

act on, the enzymes proceed down the system and start working on

destroying the pathogens.

Now how to start enzymes....pick one and start with it. Usually the

broad-spectrum one is good. Start with about 1/2 capsule at a couple

meals for a couple days. Then go up to 1/2 capsule at all meals and

snacks for a couple days. Then increase to 1 full capsule at all

meals...snacks if you want to.

Then start with the strong protease product (such as Peptizyde). Same

way. About 1/2 a capsule at a couple meals for a couple days. Up to

all meals. Then up to 1 full capsule at all meals. Then if you take a

specialty enzyme product such as No-Fenol for yeast, begin that in

the same way.

Since you might have bacteria or yeast, know that the proteases

enzymes and No-Fenol have a much bigger impact on healing. Thus they

can also cause bigger adjustments. Review the link that talks about

What to Expect. No one has all these adjustments, it is just a

sampling of what some people see some of the time. Most all go away

in a few days to a few weeks once the body adjusts to enzymes.

http://www.enzymestuff.com/discussionadjustments.htm

But you can ask about the yeast/bacteria after you get started with

the other enzymes. Many people have been down that path, so there is

lots of support and ideas to go around.

Mixing Ideas: Here is a link to many ideas for getting enzymes into

kids. You can mix enzymes in any food or drink so just find something

that your kids will accept. A popular item is to make chocolate

wafers. Basically melt some choc chips. Cool to the touch. Mix in the

enzymes you want and have the kids eat one at the beginning of a

meal. The amount of chocolate consumed is really small. These will

last in the freezer about 2 weeks so you can make some up in advance.

Other people mix in drinks, honey, applesauce, ketchup, whatever. My

kids prefer swallowing capsules so I haven't had to be as creative as

other parents are.

http://www.enzymestuff.com/discussionmixing.htm

I'll stop here so I won't overwhelm you. Your kids sound like

excellent candidates for improving with enzymes. A number of the

behaviors you noted (aggressiveness, sleep problems, meltdowns) are

often resolved once the digestion and bacteria/yeast problems are

addressed.

.

Posted July 1, 2004 · July 1, 2004

Hi

Thank you so much fo your extensive reply to my questions. I am going to start

them ASAP. It was interesting that you picked up on th yeast problem cos I

forgot to mention it but one of the boys been plague with yeast infections since

he was tiny.

Thank you.

Ruth

Posted July 1, 2004 · July 1, 2004

Hello ,

I am new here as well and wanted to say hello and welcome.

I look forward to getting to know you

Fawn

Posted July 2, 2004 · July 2, 2004

>>He has a bloated stomach, is windy and has black rings around his

eyes and he is very giggly and he screams and spins around lot and

doesn't sleep well.

These are typically signs of yeast overgrowth

http://www.danasview.net/yeast.htm

Can also be food allergy/intolerance issues also.

>>The only fruit he eats is bananas He has red ear tips and normal

bowel movements but complains of stomach ache a lot. He only sleeps

two hours a night and is aggressive and has majormeltdown at east 20

time a day. He also is very sensitive and cries alot over nothing

very much.

This sounds like phenol intolerance [bananas are high phenol] and the

symptoms can also often imitate yeast symptoms

http://www.danasview.net/phenol.htm

> I have looked at enzymes and it is a minefield and seems complicated

to me and I have no idea what to buy.

My kids did very well with HNI enzymes

http://www.houstonni.com/

Good luck.

Dana

Posted July 2, 2004 · July 2, 2004

I agree with Dana--this sounds like yeast. My daughter get giggly and

stimmy when she has yeast. She also has sleep issues, but all of

those things subside with yeast treatment. Also, bannanas really feed

yeast, as well as grapes, because they both ferment. I can not let my

daughter eat eithr one. I give her pears instead, as they are not

suppose to feed yeast.--Tod

> >>He has a bloated stomach, is windy and has black rings around his

> eyes and he is very giggly and he screams and spins around lot and

> doesn't sleep well.

>

> These are typically signs of yeast overgrowth

>

> http://www.danasview.net/yeast.htm

>

> Can also be food allergy/intolerance issues also.

>

> >>The only fruit he eats is bananas He has red ear tips and normal

> bowel movements but complains of stomach ache a lot. He only sleeps

> two hours a night and is aggressive and has majormeltdown at east 20

> time a day. He also is very sensitive and cries alot over nothing

> very much.

>

> This sounds like phenol intolerance [bananas are high phenol] and

the

> symptoms can also often imitate yeast symptoms

>

> http://www.danasview.net/phenol.htm

>

> > I have looked at enzymes and it is a minefield and seems

complicated

> to me and I have no idea what to buy.

>

> My kids did very well with HNI enzymes

>

> http://www.houstonni.com/

>

> Good luck.

>

> Dana

Posted August 22, 2004 · August 22, 2004

Welcome . There a few ADHD kids who have been

helped by enzymes. Have you read the book Enzymes For

Autism? The author, Defelice, has a website:

http://www.enzymestuff.com

P

--- angela_s64063 <angela_s64063@...> wrote:

> Boy amd I glad that I got this invite. I have been

> thinking about

> enzymes and how they effect kids with Autism. I

> have a 7 year old

> son who is PDD/NOS, ADHD and has some Anxiety

> issues. He (and his

> sister who is ADHD and ODD) have been on a gluten

> and casein free

> diet since March of this year and have been doing

> detox baths

> (bathing in Epsom Salts or a mixture of baking soda

> and salt) off

> and on for the last two years (2-3 times a week

> since starting the

> diet). What more can I do for him?

>

> Righy now he is on so many different meds (5) that I

> would hate to

> have to force him to take anymore.

>

> HELP!!!!!!!!!!!!

>

Posted August 23, 2004 · August 23, 2004

No, everytime I go to the library to check it out, it is never available. So, I

placed a hold for it.

Fred Davies <mrrva@...> wrote:Welcome . There a few ADHD kids who

have been

helped by enzymes. Have you read the book Enzymes For

Autism? The author, Defelice, has a website:

http://www.enzymestuff.com

P

--- angela_s64063 <angela_s64063@...> wrote:

> Boy amd I glad that I got this invite. I have been

> thinking about

> enzymes and how they effect kids with Autism. I

> have a 7 year old

> son who is PDD/NOS, ADHD and has some Anxiety

> issues. He (and his

> sister who is ADHD and ODD) have been on a gluten

> and casein free

> diet since March of this year and have been doing

> detox baths

> (bathing in Epsom Salts or a mixture of baking soda

> and salt) off

> and on for the last two years (2-3 times a week

> since starting the

> diet). What more can I do for him?

>

> Righy now he is on so many different meds (5) that I

> would hate to

> have to force him to take anymore.

>

> HELP!!!!!!!!!!!!

>

Posted August 26, 2004 · August 26, 2004

,

My son (Evan, 33 mo) has not been dx'd with anything (except his

cleft palate/Pierre Robin Sequence, dx'd shortly after birth) yet,

but PDD-NOS has been mentioned as a possibilitly.

First off, have you requested an evalutation from Early Intervention

yet? He would almost definitely be eligible, and, depending on where

you live, he would probably be eligible for quite a few hours of

services. I would request a Speech/Language assessment, an

Occupational Therapy assessment (including a sensory integration

component), a cognitive assessment, and possibly a Physical Therapy

assessment. Also, if he qualifies for SSI and/or Medicaid, that

could get him a lot of therapy paid for and or give you extra money

to pay for the therapy or any specialist visits that your son's

doctor believes that he needs.

Also, have you looked into taking your son to a DAN! doctor (Defeat

Autism Now! doctor). Do a google search with the words Defeat Autism

Now!, and a bunch of links should pop up. One of the first ones

should have a listing of DAN! practitioners. Some are MD's, while

others are Nutritionists/Dietitians, Allergists, etc. I haven't

personally taken my son to one yet, but I may decide to do that,

depending on the results of his upcoming tests (brainstem hearing

test, EEG, MRI, blood work). I do know a couple of local moms who

have brought their children to DAN! doctors and their children have

made amazing progress. DAN! doctors typically perform tests that

check biochemical aspects of the child's body/brain, and then

possibly recommend special diets (such as Gluten Free Casein Free

diet), supplements such as Essential Fatty Acids and

vitamins/minerals, heavy metal chelation, hormones such as Secretin,

etc. BTW, some of the doctors made be covered for the visits if they

are in-network, but most likely the supplements, special food and

some of the tests would not be covered.

ABA (Applied Behavioral Analysis) is well-researched with autistic

children and is often recommended. I recently attended a 3-day

workshop on a form of ABA called " Verbal Behavior. " I don't know

that much about traditional ABA (also called Lovaas Therapy), but

from what I understand about it, the Verbal Behavior Therapy seems

more positive and based on rewards for appropriate behavior rather

than punishments/negative reinforcers.

Check out www.verbalbehaviornetwork.com.

Another link you might check out is: www.linkstolanguage.com.

Links to Language is more like traditional speech therapy with a very

behavioral approach, but doesn't seem as gentle/positive as Verbal

Behavior, based on a 2-day workshop that I attended on that form of

therapy.

Another form of therapy that is somewhat controversial (but I have

heard many parents rave about it) is Auditory Integration Therapy

(AIT) and other sound therapies such as Tomatis therapy,

Bioacoustics, The Listening Program, etc. Most of the sound

therapies are rather pricey, but if you have the resources (we don't

at least at this time) you might check into it. I have also heard of

some schools paying for it. AIT might possibly be paid for through

insurance, if you have a really good policy.

Check out www.thedaviscenter.com. (I think that is the link...if it

doesn't work, try www.thedaviscenters.com or www.daviscenters.com or

www.daviscenter.com.) It is run by Dorinne , who is an

audiologist/sound therapy practitioner.

Also, I would seriously consider joining a parent support group that

specifically deals with autism in addition to this group. Online

groups are great, but if you can find a local group that would be

ideal because there's nothing like face-to-face interaction and being

able to share your concerns, joys, etc with those who know exactly

what you are going through.

I hope that this has been helpful and that I haven't told you a bunch

of stuff that you already knew.

Good luck, and keep the group posted on Dylan's progress!

Laurel, mom to Evan (33 mo, PRS, non-verbal)

> HI MY NAME IS BRANDY, I HAVE A 2YR. OLD SON WITH AUTISM WHO HAS NO

> SPEECH. HE WAS DIAGNOSED IN JUNE OF THIS YEAR. IF ANYONE KNOWS OF

> ANYTHING THAT SEEMS TO WORK IN TEACHING THEM TO SPEAK PLEASE LET ME

> KNOW.

> THANKS BRANDY

> (MOM OF DYLAN 2YR. AUTISTIC)

Posted August 26, 2004 · August 26, 2004

HI LAUREL, THANKS SO MUCH FOR YOUR RESPONSE. IT HAD A LOT OF GREAT INFO. IN

IT. HE IS REC. EARLY INTERVENTION THERAPY AT HOME RIGHT NOW. AND HE SCHEDULED

FOR A SCREENING AT CHILD DEVELOPMENT CENTER TO BE PUT IN A AUTISTIC CLASS. I

WILL KEEP YOU POSTED. THANKS SO MUCH.

BRANDY, MOM OF DYLAN (AUTISTIC)

Posted August 26, 2004 · August 26, 2004

thanks so much for responding. I will be looking into signing more so maybe

we can get Dylan started on that. Because he throws a lot of tantrums because

we don't understand what he wants .

thanks

brandy

Posted August 27, 2004 · August 27, 2004

> HI MY NAME IS BRANDY, I HAVE A 2YR. OLD SON WITH AUTISM WHO HAS NO

> SPEECH. HE WAS DIAGNOSED IN JUNE OF THIS YEAR. IF ANYONE KNOWS OF

> ANYTHING THAT SEEMS TO WORK IN TEACHING THEM TO SPEAK PLEASE LET ME

> KNOW.

> THANKS BRANDY

> (MOM OF DYLAN 2YR. AUTISTIC)

Our son Conor is 2yrs 9mths. The day after his second b-day, his

doctor told us that he may have PDD Autism. His only words were mama,

dada and juice. He was making no progress in his speech, he was

actually loosing words. He seemed to be regressing at a steady rate.

We were referred to an autism specialist who has been wonderful. As

our insurance would not cover the OT and ST he needed, she refferred

us to the State where he is now enrolled in the Early Intervention

program which is free. EI covers children up to the age of 3 and then

they roll under the school district which is also free. We have seen

much improvement over the past several months. His ST is wonderful.

It's been slow but he finally started attempting words. Some are

quite clear, others don't even resemble the word but at least he

tries which is a huge milestone. He doesn't use these new words to

communicate, hopefully he will one day. One of the biggest things

that helped him is Sign Language. There is a series of childrens

videos called Signing Time, there website is www.signingtime.com.

These have been our breakthrough. It took about 2-3 weeks before

Conor got the concept of signing but once he did, he never stopped. I

read a lot about PDD and he seemed to fit the criteria, it was like

reading my son's biography. Since he started signing, I've seen

another side of him that I didn't know existed. His tantrums and

frustration levels have improved greatly, he is more outgoing and

confident. Because of his improvement, the doctor thinks that he

probably doesn't have PDD and it looks more like apraxia.

Also we use picture boards. All you need is felt and velcro. We cut

out pictures from the boxes of the foods he eats (which is very

limited). He then points out what he wants, i.e - if he wants yougurt

and milk he will point to them. We also have a bedtime routine

picture board - him sitting on the potty, brushing his teeth, wearin

his pjs. Sorry for going on so much...I guess what I'm saying at the

end of the day is - speech is the only means for your son to

communicate - USE WHATEVER WORKS. You will be as proud of your son's

first sign as much as his first word....goodluck!!

Posted September 9, 2004 · September 9, 2004

Welcome ! This group has been so helpful and always open to

questions and are great listeners too! -Clare

Posted September 9, 2004 · September 9, 2004

Welcome! How old is your son? What types of therapies are you using? Have you

read the book The Late Talker or The Out of Sync Child (and the sequel, The Out

of Sync Child at Play)? You'll find a lot of info here, and many, many people

who will share their experiences and opinions. Again, welcome!

Sherry

cindyroyster <cindyroyster@...> wrote:

Hi! I am new to the group. My son was initially diagnosed with pdd

almost a year ago but since his diagnosis is believed to be apraxia

with some sensory issues. He is progressing wonderfully. I joined

the group so that I could exchange information with other parents

and hopefully learn alot more. I look forward to hearing from all

of you. Thanks.

Posted September 9, 2004 · September 9, 2004

I'm new too. Our story is the same as yours, PDD initial diagnosis

but now apraxia with sensory issues. How is your son with eating?

Ours will only eat one flavor of Trix yougurt and various dried

crackers and cereal. God help us if Trix ever goes out of business.

We can't seem to get him to eat anything else. He's seeing a ST and

OT which is helping grately. His sensory issues are comming along and

he is even trying to say some words. We mostly use sing language

which was our best discovery. It's slow moving but its moving!!!

Posted September 10, 2004 · September 10, 2004

Welcome!

Funny you should talk about how your child eats only crackers, cereal and

yogurt. If we didn't use applesauce with every meal, our son would have

probably eaten only applesauce, crackers, and cheerios. I got recipes for

crackers and started making them at home with healthier stuff in them (veggie

crackers with real veggies, wheat germ, etc.) 'cuz I knew Josh would eat an

entire roll of Ritz if I'd let him!

Sherry

tonieire <galhub1@...> wrote: