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WELCOME!!!!! you found the right place for questions. everyone here

has been great. it helped me to look over old posts and some of the

pictures. i'm no expert (sons in helmet only 2 weeks) but if i can

help, just give a yell-lisa

> I wanted to take a minute and introduce myself. My son, Braedon (10

> months), was diagnosed Fri. with Plagio. We were also " molded " on

> the same day. His helmet should be in in about 2 weeks. That is,

if

> we can get the insurance company to agree....either way, he will be

> in a helmet in 2 weeks, even if we have to pay for it ourselves!

>

> I have read some of the posts, and am looking forward to getting to

> know everyone! I am sure I will have alot of questions as time goes

> on!

>

>

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> WELCOME!!!!! you found the right place for questions. everyone here

> has been great. it helped me to look over old posts and some of the

> pictures. i'm no expert (sons in helmet only 2 weeks) but if i can

> help, just give a yell-lisa

>

Welcome to the group. My son will be in his band for 1 week this

Tues. I'm sure you will find much help here. If you need anything,

let me know.

(sam)

> --- In Plagiocephalyegroups, " Ward " <mmward1@p...>

wrote:

> > I wanted to take a minute and introduce myself. My son, Braedon

(10

> > months), was diagnosed Fri. with Plagio. We were also " molded "

on

> > the same day. His helmet should be in in about 2 weeks. That

is,

> if

> > we can get the insurance company to agree....either way, he will

be

> > in a helmet in 2 weeks, even if we have to pay for it ourselves!

> >

> > I have read some of the posts, and am looking forward to getting

to

> > know everyone! I am sure I will have alot of questions as time

goes

> > on!

> >

> > W

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Welcome to the group !

Kendra

Ward wrote:

> I wanted to take a minute and introduce myself. My son, Braedon (10

> months), was diagnosed Fri. with Plagio. We were also " molded " on

> the same day. His helmet should be in in about 2 weeks. That is, if

> we can get the insurance company to agree....either way, he will be

> in a helmet in 2 weeks, even if we have to pay for it ourselves!

>

> I have read some of the posts, and am looking forward to getting to

> know everyone! I am sure I will have alot of questions as time goes

> on!

>

>

>

>

> eGroups Sponsor

[Get 3 CDs for ONLY $9.99!]

Get 3 CDs for ONLY $9.99!

>

>

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Hi ,

Im new too. Only been on line 2 weeks now. My son is 8months old and is

waiting to get casted for the Doc. You're going to be so happy you found

this group. My son isn't even in the band and Ive learned so much just from

checking in everyday. Its really uplifting to know there ARE others going

through the same thing. Good luck.

Heidi & Luke (still waiting)

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Hi and Braedon!

My daughter Hannah will be the same age as you son when she gets her

DOB band. She is getting casted Wednesday and she will have her band

two weeks later. She will turn 10 months old tomorrow....so, we are

in the same boat as far as the age is concerned. My daughter has

flat sides with a protruding forehead. We are hoping she gets some

filling out in the sides and her forehead pushed back a little.

Feel free to email me direct if you want. We will both be

experiencing this journey with 10 month olds....

Talk with you soon.

Stacey Chapman

Mother of Hannah

rchapman@...

> I wanted to take a minute and introduce myself. My son, Braedon

(10

> months), was diagnosed Fri. with Plagio. We were also " molded " on

> the same day. His helmet should be in in about 2 weeks. That is,

if

> we can get the insurance company to agree....either way, he will be

> in a helmet in 2 weeks, even if we have to pay for it ourselves!

>

> I have read some of the posts, and am looking forward to getting to

> know everyone! I am sure I will have alot of questions as time

goes

> on!

>

>

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-

Welcome to the group! This is a great group!! There is always someone

who knows the answer to any question or they will try to find out. I

too have just started this journey. My daughter was banded on the

12th of January.I don't know everything but learning. If you need

anything just tell me!!Glad you found us.

Amy & Abigail

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  • 3 weeks later...

Gloria,

Welcome to the group! Your son's story sounds so much

like my Tyler's. One difference though is that his

pediatricians were absolutely no help whatsoever and I

reffered him myself to EI and got him started in that.

He was just recently (2 weeks ago), dx'ed with verbal

apraxia, oral motor weakness, and sensory integration

issues. He has not been evaled by OT yet, but we are

working on that right now. The SLP that assessed him

2 weeks ago was the one to point out alot of his

sensory issues, although I knew he has some " wierd "

things he does, just thought it was him and being 2.

He is now 2.4 yrs old and we are hopefully going to be

starting ST within the next 2 weeks. I hope all is

well with you and your sons! I am available for

private email also. Once again, welcome and I hope

you enjoy this group as much as I have for the last

few weeks, everyone here is GREAT!!

Kari

mom to Brittany 9, Spencer 6, and Tyler 2.4 w/verbal

apraxia, oral motor weakness, and SI issues.

Barstow, California

--- glowormia@... wrote:

> Hi. My name is Gloria. I have three sons. Max-8,

> Brad-2 and Sam 7

> weeks. Max was our advanced child (still is) He

> was an early talker.

> Brad wasn't saying much at all and I was very

> concerned at about 20

> months. Our family all said the usual that he is a

> late talkerand he

> will be " fine " and that I was just comparing him to

> Max. I finally took

> my concerns to our pediatrician and we got involved

> with the EI program.

> He is one smart little boy we found out but

> definetely qualified for

> speech therapy! He says a few words very well like

> " Hi " " kitty " and

> " ahhh done! " Everything else is called dah-dat.

> Everyones frusrtration

> level washigh as we could not communicate. They

> taught u signing to

> start cut down on the frustration. He picked it up

> remarkably fast and

> is doing well. He turned two in Jan and is now

> beginning to make sounds

> with the signs and we are very excited about that.

> Recently the Speech

> therapist tried a Nuk brush and Brad was terrorized

> by it. SHE WOuld in

> play lovingly reach over to touch him and he would

> dramatically pull

> back. She asked about other signs. I told her how

> he would eat his

> PBand J like a 'cat' wouldn't pick it up for fear

> of getting some on

> his hands. We tie him down to shave his head

> because he panics during a

> haircut! Many others. We jsut thought they were

> all two year old

> phases, We were then evaluated for SI by an OT and

> Surprise!....he has

> it and we will start therapy probably next week. I

> was suggested to

> talk to our pediatrician about hypotonia and I did

> and he thought I was

> nuts but we think he has the signs of that too.

> Droopy big cheeks,

> mouth open all the time and snores while sleeping.

> I guess I am writing to introduce myself and our

> family and would love

> some warm fuzzies. I have enjoying being a

> recprient of the list for

> about a week now and it feels so good to have

> support out there as I was

> getting very weepy and feeling alone. Here is this

> wonderful little boy

> with so much to say and tries so hard. And even

> though he makes

> progress it is ever so small and we praise him very

> much and love him

> and shower him with it and never make him to feel he

> is different. But

> silently I hurt inside almost all the time as I know

> the road is SO

> long. It is getting difficult for me now when

> people come up to him in

> the store (he is a big boy too which makes him look

> even older) and they

> ask him his name ans mess up their face when he

> doesn't answer. Or when

> kids talk to him and he can't reply. Or my personal

> favorite is when he

> is all excited about something and is yelling

> DAT-DAH and I am answering

> saying, " yes, police car " or whatever it may be and

> people look at us

> like we are both weird! I want to push them. LOL!

>

> Anyway. thank you for letting me vent. Keep those

> warm fuzzies and

> support coming!

> Gloria

>

>

<HR>

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<bgsound

src= " http://www.geocities.com/Heartland/Prairie/4302/angel20McLachlan.mid " >

<body

background= " http://members.tripod.com/~wiggylee/bb/mbaby.jpg " text= " 000000 " >

<table

background= " http://members.tripod.jpg "

width=100%><tr><td>

<img

src= " http://members.tripod.com/tinktink/just/angelsea.gif " height= " 175 " width= " 220\

" boarder= " 0 " >

</body>

</tr>

</td>

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__________________________________________________

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--

hi gloria,

i sure understand , my son is 4 and only now he started to say

some words ,we started therapy before 2 yrs old and the progress is

slow and its over a year that he gets si therapy and boy does it

help and pysiotherapy.its a long road . my concern is that he does

not interact with children or gets very uncomfortable when he goes to

different places or people. this i don't understand.....

edie

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  • 2 months later...
Guest guest

Hi Lane,

Welcome to the list! Were happy you found us too. I also

have a 14 year old that has apraxia and will be a freshman

next year. I nearly (((choked))) saying that, where have

all these years gone by?

Anyhow, there are a few parents on the list that I'm aware,

which have teens and I would enjoy hearing from them also,

but most are lurking, which is welcomed also.

There is H. (Hi ) a new member as well! She has a

teen son with Apraxia and has been sharing to the group

list throughout this past week. It has been truly wonderful

having her here. I'm sure she will pop in and say hello.

Therefore, you are not alone here. We all have traveled

this long road! I understand the hardships in which all our

children have endured throughout the years. And yet I have

celebrated their personal victories more so, knowing how

far they each have come.

Here you will find parents with children of all ages,

rejoicing in their children's small and big triumphs!

There are many parents and professionals on the list,

working hard toward our children's future and reaching out

to each other.

I regret to say I have not had time to meet all the

newcomers just yet, but hope to soon. As this list is

growing daily, I am enjoying reading all that is

contributed and shared here.

As you introduced your son's challenges to us, I knew it

has been difficult for you both. But I know there is another

outlook of your son, which is how magnificent he must be in

all that he can do! We look forward to you sharing his

spirit, goals and triumphs with us! And most of all know

that you are not alone on this journey. Were all here

for you and we want to help.

Sincerely, Mustafa

Mom to Khalid 14 1/2, Jadd almost 7, Danya 9 1/2

>We are so happy to find this source of information. Our

> youngest son is 14

> years old, he is a freshman. He has a severe language

> delay. He can NOT

> read. His cognition is great. We live in San Diego and

> have seen Many

> different doctors. Both the doctors and the educators

> have been reluctant

> to give him a diagnosis. In his IEP's they do use the

> terms apraxia and

> aphasia. For a year we asked them for information about

> finding out more, not

> one would recommend or volunteer where to look next. If

> they did not know

> they were a dead end! Has anyone had similar

> experiences? We are trying to

> find someone that is like our son. We know he isn't the

> only child with his

> particular problems. We want to know if there are Doctors

> that deal with

> these problems. We are anxious for any and all

> information. Thank you.

> Lane

>

>

>

>

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  • 1 month later...
Guest guest

EnzymAid is available from Kirkman Labs, Peptizyde and HN-Zyme Prime

(pronounced " H-enzyme Prime " ) are available from HNI (Houston

Nutraceuticals, Inc.)

> Hello.

>

> I have been looking thru past posts, but I don't have enough

> background to understand it all, even after looking thru the

articles

> on file.

>

> A couple of questions:

>

> Are there basically three enzymes available to buy: Enzymaid,

HNzyme,

> and Peptzyde (sp?)? Where are these available from? What are the

> differences between them? Do they break down different things?

Why

> do some people take two different kinds at the same time?

>

> Thank you for your patience! I am very interested in learning more.

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Guest guest

Hi, welcome,

It can be a lot to read, huh?! There are a couple of posts that

say " enzymes 101 " which may be helpful. But you can also keep asking

the most fundamental questions.

Besides EnzymAid, Peptizyde and HN-Zyme Prime, some people are using

SerenAid from www.serenaid.com. Someone else mentioned Similase Jr.,

Kidzyme (which also contains some probiotics), and a few others.

Enzymes by their nature only act on specific substances, so you need

to get the rights ones. In Parents Guide to Selecting Enzymes there

is a list of which enzymes act on which substances (lipases for fats,

proteases for proteins). The primary ones mentioned on this message

board are designed to help with the problems in autism, although some

also are a good all-purpose enzyme formulation. Devin Houston, who

answers questions on this board, formulated SerenAid, Peptizyde and

HN-Zyme Prime. SerenAid has a few different types of enzymes in it

that are not in Peptizyde. Peptizyde has about 50% more DPP IV, which

is the enzyme that breaks down casein and its derivatives. HN-Zyme

Prime and EnzymAid are all-purpose type enzymes that act on many food

groups. So, it depends on what you are looking for, too. Also, some

people just have a reaction to one product, but then do fine with

another product. This seems to be due to certain things in the

formulation such as papaya or pineapple. Some people take two

different kinds because that covers most food groups. And a few

people noted hyperactivity with just one, and then added another for

other food groups and the hyperactivity stopped.

I choose Peptizyde because dairy is our main problem and it seems to

be the strongest breaking up casein. My two boys and myself have used

it consistently for 6 weeks with no problem. We have left the GFCF

diet, and added ZymePrime for the other food groups.

Hope this helps.

.

> Hello.

>

> I have been looking thru past posts, but I don't have enough

> background to understand it all, even after looking thru the

articles

> on file.

>

> A couple of questions:

>

> Are there basically three enzymes available to buy: Enzymaid,

HNzyme,

> and Peptzyde (sp?)? Where are these available from? What are the

> differences between them? Do they break down different things?

Why

> do some people take two different kinds at the same time?

>

> Thank you for your patience! I am very interested in learning more.

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  • 3 months later...

,

Here's my

two cents on this, take it for what it's worth. Before you get

concerned about life extention, worry about improving the qaulity of the

life you have. I am a 38 year old male, currently at 177

pounds. Four years ago I made a lifestyle change by eliminating

fastfood, burgers and fries for lunch, high fat diet and started eating

better (fruits, vegetables, low fats) and I also started exercising

routinely. I felt much better about myself, improved my energy

levels, and lost weight although I really maintained a weight of about

205. Last April I read Dr. Walford's book " Beyond the

120 year Diet " (as well as his other book published with his

daughter discussing mostly recipes) and it has changed my life. May

1 I began the CRON diet and have lost close to 30 pounds while exercising

less (3 days, 30-45 minutes aerobic exercise) and feeling like I am

eating lots more. I am also certain I am only now in life getting

all the nutrients I need as well as keeping my insulin levels at a

conistent level (see Greg, I do read your posts).

So enough

of my story, I really only bored you with it to show an example of the

programs success. Here are some easy suggestions from someone who

started the diet without really raiding a local health food store (it

took me about 3 months to find one in my area).

1) GET WALFORD'S BOOK!!!!!! Also download the demo softare

from his web page

(http://www.walford.com),

it is priceless (I actually bought the full version).

2) Eat balanced meals and make sure you eat carbs (IMO) but eat low and

mid GI carbs (discussed very well in Walford's book). Eat fruit

and/or vegetables and grains at each meal meal. Try to get protein

at each meal. Hit the produce stand at the local supermarket.

3) Until you really get immersed in this, do not go hungry. Forget

worrying about calories at first (although keep track of them), eat

healthy. Eat some fruit or low-mid GI grains if your hungry.

Fat Free Yogurt is great too.

4) Under the support section there is great advice on eating out.

5) Make sure you change to whole grains, and cut out fats or at least bad

fats: Examples: use brown rice over white rice, wholewheat bread

over white bread, egg whites over whole eggs, wholewheat pasta over

regular pasta, olive oil over butter/bad oils. Throw your

butter/margerine out the window.

6) The members on the forum are very knowledgable and helpful but some

are know for extremes. Do not go crazy over one thing or another,

read about it and think before you rush in. Everyone's approach is

different, but the bottom line is to obtain a healthier and hopefully

longer life through Calorie Restriction and more improtantly Optimal

Nutrition (CRON!!).

7) Worry about reducing your BMI to something acceptable by the general

medicine, something like 25 (about 130 pounds for your height).

When you start hitting that, then you really have to consider whether to

go for the true CRON and get under a set weight to get the age rearding

benefits.

8) This has been constroversal lately on this forum, but the amount of

weight loss should be slow and steady. If you follow the diet, I

would guess weight will drop off fast at first, but after the first few

months you want it to stabilize at 1-3 pounds/week. Reasons are in

Walford's book and you can make your own decision after reading it

One final

point, my wife is 5 foot, 0 inches and weighed 145 pounds May 1.

While ahe is not Cronning, she eats what I cook (she does cheat a decent

amount though) without too much fuss (the stuffed pepper episode I will

not disclose here, just know she almost through Walford's book in the

trash that day). She is now 125 pounds, feeling better than she has

felt in years, and starting to believe in Cronning.

Well, just

my two cents, I am sure there is lots I left out that others will

include. I hope this helps.

Joe

At 09:14 AM 9/19/01 -0400, you wrote:

Greetings,

I am brand new in taking steps toward anti-aging. I am a 34 year

old female, 5'0 " tall and weigh 183 lbs. Health conditions are

chronic asthma, overweight & adult acne. I also have osteo

arthritis and other osteo ailments that i can't spell, from many years of

my childhood and early adulthood taking Prednisone for severe

asthma. There are some other ailments, but not serious enough that

I'm going to mention. My energy is not where I want it to be, and

my physical strength is very weak. Bottom line, I am 34 and my body

feels like it is 64 at times. Luckily, I have always and still do

look young for my age.

My husband gave me the URL for LEF website. He knows that I have

for years talked of how I want to live as long as possible because there

are lots of things I want to do, accomplish & witness. I hear a

lot of people say that they wouldn't want to live into their 90's and

100+ years. Well, I DO.

I have come to the place that I not only want to lose weight and become

healthy, but that I need to, especially for the arthritis. My

husband and I have a VERY active social & love life. We are

very busy working on projects near to our hearts. I enjoy our

active lifestyle and want to become even more active, but I don't have

the stamina for much more at this point.

I would love any feedback on the best way/s to move forward toward my

journey in search of the Fountain of Youth. Unfortunately, monetary

funds are low, so I would appretiate any advice on obtaining materials

and supplementation at economical prices.

I went to

http://members.ozemail.com.au/~gowatson/aging.html

after seeing it in the last digest from this group. I am very interested in starting the Glutamine and APGL supplementation process. Are there any other views or thoughts on this?

I am just starting calorie reduction and fat & carb reduction. Any advice on this for a newbie is also appretiated.

Thank you,

Mrs. Glatt

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----- Original Message -----

From: revrachael@...

Sent: Wednesday, September 19, 2001 10:44 PM

Subject: [ ] New

I am just starting calorie reduction and fat & carb reduction. Any advice on

this for a newbie is also appretiated.

Hi ,

I really suggest you have a good hard look at your diet and work to reduce your

intake of saturated fats and highly

processed carbs. I know you have probably heard this before but you need more

nutritionally dense veggies and some

moderate exercise such as walking a mile or so every day.

While there are supplements which may help, nothing will work unless you alter

your diet.

I suggest you get Dr. Walfords book " Beyond the 120 Year Diet " and read it cover

to cover several times. If you follow

his suggestions, you can't go wrong.

Keep Well,

Greg

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Dear Mrs Glatt,

I read your interesting letter. I also have asthma.

About 10 years ago I started a walking program.

I now walk about 20 miles a week. 15 minute miles.

This seems to have really helped my asthma.

I also moved to Florida. I feel better breathing in warm air

outside rather than the cold winter air of NJ.

I have taken Prednesone in the past but it seems to make

me feel light-headed. I am also new to this site and I want to improve my diet.

Good Luck

Hallandale

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  • 3 weeks later...

Hello All,

I am new to this particular site and not so new to the apraxia

diagnosis. My so Jack is 2.4yrs and has moderate apraxia, SI and is

mildly PDD although his dev.psychologist says he isn't really PDD she

just thinks that his social and play skills are a little delayed. She

wanted him to be in her program so to qualify she gave him the

diagnosis. Jack is a bright little boy who has improved immensely in

the last 2 months he has expanded his vocabulary by 18 words, has

started to use 2 word sentences " more juice " etc. I started him on

Pro EFA's 3 1/2 weeks ago, and his expressive language has gone

through the roof. I almost always know what he is saying because well

I am his mom but other people outside the family are also. We are so

proud of him. My major concern is his behavior, He has tantrums alot.

He will go upstairs into his room and close the door, I have a videw

monitor so I can see him and he will sit on his bed and read, or he

will look out the window. I wonder if any of you have children that

do this? should I be concerned with this behavior? When I say no to

him, like No JAck you can't watch a movie he will sometimes get so

mad hitting me knocking stuff over gets pretty aggressive then will

go upstairs and come down when he feels like it 5-8 min later. Is

this typical I don't know but tend to think not. My other concern

and ? is the amount of time he would like to watch movies. I don't

mean like barney movies I mean like Toy story, Tarzan, Babe, Antz, A

bugs life. I only let him watch once in a while but he wants to watch

TV all the time. He also has memerized all the movies by heart. He

will act out scenes non-verbally just before they happen like he is

always one step ahead of things. Does anyone else have children that

do this?

As far as his tantrums I am truly concerned because they are causing

him to not participate in his sessions with therapy. Today his social

and play therapist for his pdd symptoms came and he would not come

down stairs at all. As soon as they left he came down stairs and was

fine.

Well I hope that I haven't written too much stuff I just could ask

and talk about Jack all day. He and his brother are my pride and joy

and I would not trade Jack's Issues for anything in the world. He has

made me a better mother and he has taught me more than all the things

that I have taught him! THanks for the EAR!

Eileen mom to Jack 2.4 yrs and 10 months

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Hi--I thought for a minute I was reading about my son! My 3 1/2 yr old son

also throws alot of tantrums. In fact, I just got finished delaing with a

15 minute meltdown. His favorite speech therapist came today and he refused

to cooperate. All he wanted to do was watch a movie which he does alot! I

know I shouldn't let him watch so many but usually it is the only way I can

calm him and it saves my sanity. I also think he learns so much from these

movies. He too will memorize the lines and act them out--I THINK this is

good but maybe I am wrong. My son is apraxic and many people think he is

autistic or PDD, as well. He continues to make progress with the language

but his frequent tantrums and meltdowns are concerning to me. He too will

disappear upstairs to his room like he needs some time alone. His social

and play skills are also delayed. Anymore, his tantrums make me end up in

tears. I can't seem to handle them appropriate despite many professionals

advice. Nothing seems to work. I also have a very high strung 2 year old

and I am completely overwhelmed. My husband works night and day and most

weekends so I am left to deal with these tantrums. He definitely throws

these tantrums more for me than anyone else. In fact people close to me

think I am totally over reacting becasue they don't see these tantrums. I

know I havent been able to give you any advice here but I wanted you to know

I understand how difficult these behavior issues are. I am searching for

some answers myself.

Thanks for listening. You can email me directly if you'd like. Good luck

Z

bearcat@...

----- Original Message -----

From: <seanzonigal@...>

Re:new

> Hello All,

> I am new to this particular site and not so new to the apraxia

> diagnosis. My so Jack is 2.4yrs and has moderate apraxia, SI and is

> mildly PDD although his dev.psychologist says he isn't really PDD she

> just thinks that his social and play skills are a little delayed. She

> wanted him to be in her program so to qualify she gave him the

> diagnosis. Jack is a bright little boy who has improved immensely in

> the last 2 months he has expanded his vocabulary by 18 words, has

> started to use 2 word sentences " more juice " etc. I started him on

> Pro EFA's 3 1/2 weeks ago, and his expressive language has gone

> through the roof. I almost always know what he is saying because well

> I am his mom but other people outside the family are also. We are so

> proud of him. My major concern is his behavior, He has tantrums alot.

> He will go upstairs into his room and close the door, I have a videw

> monitor so I can see him and he will sit on his bed and read, or he

> will look out the window. I wonder if any of you have children that

> do this? should I be concerned with this behavior? When I say no to

> him, like No JAck you can't watch a movie he will sometimes get so

> mad hitting me knocking stuff over gets pretty aggressive then will

> go upstairs and come down when he feels like it 5-8 min later. Is

> this typical I don't know but tend to think not. My other concern

> and ? is the amount of time he would like to watch movies. I don't

> mean like barney movies I mean like Toy story, Tarzan, Babe, Antz, A

> bugs life. I only let him watch once in a while but he wants to watch

> TV all the time. He also has memerized all the movies by heart. He

> will act out scenes non-verbally just before they happen like he is

> always one step ahead of things. Does anyone else have children that

> do this?

> As far as his tantrums I am truly concerned because they are causing

> him to not participate in his sessions with therapy. Today his social

> and play therapist for his pdd symptoms came and he would not come

> down stairs at all. As soon as they left he came down stairs and was

> fine.

> Well I hope that I haven't written too much stuff I just could ask

> and talk about Jack all day. He and his brother are my pride and joy

> and I would not trade Jack's Issues for anything in the world. He has

> made me a better mother and he has taught me more than all the things

> that I have taught him! THanks for the EAR!

> Eileen mom to Jack 2.4 yrs and 10 months

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My daughter also used to have tantrums, very big ones, mostly for me. I used to

get so upset by them. Then one day I took her aside, when we were having a good

day just relaxing at home. At the time when we were both in a good mood I told

her that her tantrums really bother me and make me feel bad so I am not going to

watch them any more. I explained that there are times when we feel upset and

want to have a tantrum but as we grow up we find other ways to get rid of those

feelings like by having some time alone, or by cleaning house, or going for a

walk or running around outside. And I told her that from now on, she would have

to go to her room to have her tantrum, until she was finished, or she could go

outside in the back yard to run.

An half hour later, I pretended to get angry at something and I made an

exaggerated show of it, saying how angry I was, and then rating my anger... " I am

so angry and its growing...it was 3 and now its up to 4 and almost 5...now it's

getting to 6 and I HAVE to do something to get rid of it " and then I went into

our backyard and ran around the yard a little.

My daughter watched it all like it was a big fun game that was purely for her

entertainment. And I thought all was lost.

Later, when I told her she had to stop playing her game and get ready for

dinner, she started the tantrum. I immediately took her to her room. She tried

to come out and I reminded her that she had 2 options, to stay in her room until

she was finished with her tantrum or go outside. So she stood in her room with

the door wide open.

I stayed where she could see me, and pretended as if I heard none of it. When

she came out I looked at her surprised and said, " Oh you are having a tantrum?

You know you have to do that away from me " and asked her if she wanted to go to

her room or outside. She responded with a scream, so I led her outside, and

told her to run. Of course she didn't. So I did instead. I'm sure the

neighbors thought I was torturing her because she screamed so loud trying to get

my attention. But I acted as if I couldn't hear and kept jogging around the

yard. Afterwards, I calmly walked past her back into the house saying, " Boy now

I'm thirsty " as I passed her.

This process went on for 3 days straight, me pretending to get angry and going

to my room or going outside, her throwing tantrums as I tried to pretend it

wasn't happening.

But on the 4th day, when I led her outside and told her to run, she did! It

took a few more times of me leading her outside, and later to her room, but

eventually it because a routine for us. That was 5 years ago and now whenever

she gets upset she will hold up her fingers, counting, rating how upset she is,

first 3, 4, 5, and when she hits 6, she gets up and goes to her room or heads

towards the back door.

I don't know if it helps, but I thought I'd share what we did and wish you luck!

----- Original Message -----

Hi--I thought for a minute I was reading about my son! My 3 1/2 yr old son

also throws alot of tantrums. In fact, I just got finished delaing with a

15 minute meltdown. His favorite speech therapist came today and he refused

to cooperate. All he wanted to do was watch a movie which he does alot! I

know I shouldn't let him watch so many but usually it is the only way I can

calm him and it saves my sanity. I also think he learns so much from these

movies. He too will memorize the lines and act them out--I THINK this is

good but maybe I am wrong. My son is apraxic and many people think he is

autistic or PDD, as well. He continues to make progress with the language

but his frequent tantrums and meltdowns are concerning to me. He too will

disappear upstairs to his room like he needs some time alone. His social

and play skills are also delayed. Anymore, his tantrums make me end up in

tears. I can't seem to handle them appropriate despite many professionals

advice. Nothing seems to work. I also have a very high strung 2 year old

and I am completely overwhelmed. My husband works night and day and most

weekends so I am left to deal with these tantrums. He definitely throws

these tantrums more for me than anyone else. In fact people close to me

think I am totally over reacting becasue they don't see these tantrums. I

know I havent been able to give you any advice here but I wanted you to know

I understand how difficult these behavior issues are. I am searching for

some answers myself.

Thanks for listening. You can email me directly if you'd like. Good luck

Z

bearcat@...

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Eileen -

Hi there - I have been where you are, and I sure understand how upsetting and

scary it is. My son was diagnosed with verbal dyspraxia at 2 1/2 years old. He

was also said to be in the autistic spectrum (which he is not) and obsessive

Compulsive (which he is not). This was because of his anxiety, his " meltdowns " ,

and his bad behavior. As his language has grown, and he has matured (he is now

4) it is obvious he is neither of these.

also would " flip-out " and want to go be by himself for a couple of

minutes. We especially noticed this when there were a lot of people around, or

a lot of stimulation. We realized that he was getting too much " input " and if

he was not allowed to escape somewhere by himself he would have a " meltodown "

(this is what I call the tantrums that are un-controllable and HORRIBLE!)

Everytime we would go someplace we would make sure he had someplace to go in

case he needed some " time. " When we were at home and he would get

extremely frustrated, he would do the same the thing - go into his room and

close the door. We accepted this and as long as he wasn't destructive in his

room, he was allowed to go in and close the door. He would also come out about

5 minutes later smiling. Sometimes Kids just need their own space - just as we

as adults do.

The frustration level is so high for these children as they want to communicate,

but feel they are unable too - sometimes they need to cool off. also

went through his " terrible 2's " later than most children because he was/is

behind socially. without being able to communicate until later, it is only

natural that socially he mature a little later. Now that he is 4 I am noticing

that he is catching up fast though!!

Movies - my son LOVES those movies too. I am guessing that your son may get

very angry because he is feeling like he is unable to communicate his needs. In

's case, he would try to tell me he wanted to watch a movie and when I

would say no - he thought I wasn't understanding what he was saying. Usually we

would be so excited when he would communicate with us that we would give him

whatever he was asking for - but when I began saying no, even though he was

communicating me, I think it confused him. I began sitting down with him and

explaining that I understand he wants to watch a movie, but we are not going to

right now - maybe at bed time, Okay?? I always ask him if he understands that I

do hear him, but that sometimes mommy has to say no.

This is all advice from a mom - I just want you to know that I understand how

scary this time is - I spent many nights crying when my son was going through

the same transition. Now that your son is starting to talk more and is on the

Pro EFA (my son is too!) he has a lot of new experiences happening, and it may

be hard for him to adjust at first. Just be patient and give lots of hugs and

kiss. Make sure you and your son laugh each day - if he is grumpy, tickling

always works!! Take each day one at a time and I promise it will get better.

Please feel free to e-mail me anytime if you want to unload, or just chat.

Have a good day today!

Carnell

North Carolina

www.verbalDyspraxia.com

[ ] Re:new

Hello All,

I am new to this particular site and not so new to the apraxia

diagnosis. My so Jack is 2.4yrs and has moderate apraxia, SI and is

mildly PDD although his dev.psychologist says he isn't really PDD she

just thinks that his social and play skills are a little delayed. She

wanted him to be in her program so to qualify she gave him the

diagnosis. Jack is a bright little boy who has improved immensely in

the last 2 months he has expanded his vocabulary by 18 words, has

started to use 2 word sentences " more juice " etc. I started him on

Pro EFA's 3 1/2 weeks ago, and his expressive language has gone

through the roof. I almost always know what he is saying because well

I am his mom but other people outside the family are also. We are so

proud of him. My major concern is his behavior, He has tantrums alot.

He will go upstairs into his room and close the door, I have a videw

monitor so I can see him and he will sit on his bed and read, or he

will look out the window. I wonder if any of you have children that

do this? should I be concerned with this behavior? When I say no to

him, like No JAck you can't watch a movie he will sometimes get so

mad hitting me knocking stuff over gets pretty aggressive then will

go upstairs and come down when he feels like it 5-8 min later. Is

this typical I don't know but tend to think not. My other concern

and ? is the amount of time he would like to watch movies. I don't

mean like barney movies I mean like Toy story, Tarzan, Babe, Antz, A

bugs life. I only let him watch once in a while but he wants to watch

TV all the time. He also has memerized all the movies by heart. He

will act out scenes non-verbally just before they happen like he is

always one step ahead of things. Does anyone else have children that

do this?

As far as his tantrums I am truly concerned because they are causing

him to not participate in his sessions with therapy. Today his social

and play therapist for his pdd symptoms came and he would not come

down stairs at all. As soon as they left he came down stairs and was

fine.

Well I hope that I haven't written too much stuff I just could ask

and talk about Jack all day. He and his brother are my pride and joy

and I would not trade Jack's Issues for anything in the world. He has

made me a better mother and he has taught me more than all the things

that I have taught him! THanks for the EAR!

Eileen mom to Jack 2.4 yrs and 10 months

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Dear ,

Thank you for your reply, I actually felt better after reading it. I

just have a few ?'s for you. Did your son have sensory issues? Jack

they told me is mildly PDD and has some sensory stuff. Today I

brought him to Boston Children's for a physical therapy visit for his

brachial plexus injury and the visit was fine until 5 minutes into it

he decided he wanted to leave. The PT wasn't even touching him, he

just freaked out, He was kicking and screaming, and I was telling him

it was OK and to try and relax. He wouldn't and couldn't calm down. I

wonder if that is related to the sensory stuff and that maybe when he

starts to get upset he gets so out of control and can't regulate

himself. He finally calmed down after about 5 minutes. But not

without a real struggle from me, were talking about a 40lb 38 " 28

month old here that is extremely strong.

I have taken all his movies away where he can't see them, he still

asks for them and I just say not now instead of NO. He has accepted

it for the most part and does not get as upset. He will still go into

his room sometimes when he is upset and I wait 5 minutes and then I

go and tell him he needs to come out and he says NO and pushes me out

the door and closes it behind me. UGH!!! I do not know if I am making

too much of this behavior. He almost always tantrums when it is time

to change his diaper and it literally takes me 5-7 min. to get his

diaper changed. I guess I am just wondering how much of it is just 2

1/2 yr old behavior and a serious problem. There are some days when

he is an absolute angel and other days when he is a nightmare. I am

confident in his speach though, He is using 2 word sentences now

like, MORE JUICE, NO MAMA, MAMA JUICE etc. His volintary speech has

gone through the roof. I attribute all this partly to EFA's he has

now been on them for 5 weeks and his speech got dramatically better

after about 3 1/2 weeks on them.

ANother ? and maybe you or someone else can answer is about carbs. I

have heard all about them being like poision to some children and how

their diet can also have a huge impact on behavior, (PDD, Autisim,)

Do you know or will the LCP solution tell me all that stuff. I am

expecting to get it in the mail this week after ordering it online.

ANyway I don't want to babble just a very frazzled, and tired mother.

Thank you for your time,

Eileen

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, What an awesome response you gave to Eileen! I wish that I had known

six moths ago about what you were saying when you told your son " no. " Once I

figure out that my son thought that I wasn't understanding him when I told

him no things got a lot better for us also. I have printed your email to

refer to when I am feeling alone and when I need inspiration. Your son is

lucky to have such a loving and supportive Mom.

: Mom to Spencer age 3 (Moderate Expressive Language Disorder) and Audrey

7 who is so helpful with her very loved little brother

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Dear Eileen,

Your description of your son sounds EXACTLY like my daughter used to be. She

definately has sensory issues. I have found that the brushing technique REALLY

HELPED a lot with the sensory stuff. It was difficult to do it because of the

time factor involved, but well worth it!

Once my daughter started a big tantrum, it was almost impossible for her to be

pacified immediately. I did believe like you, that she just couldn't regulate

herself. I feel that's why running helped her so much because it helped her to

become distracted. It didn't always work, and running was much more effective,

but when she had a tantrum around others and indoors (like at the PT's office or

doctor's office, etc.) the only thing that I could really do was for us to sit

quietly (acting as if nothing was going on) and then tell her I was waiting when

she was ready to come give me a hug. Once she did come to me, I hugged her very

firmly (for the sensory stuff because a firm hug is better for them as you must

know) and only then was she able to calm down. Embarrassing at times, yes!!

But it was better than making the tantrum worse in public and it's amazing how

strong they seem when they are so little! The key for ME to deal with it was to

continually tell myself to remain calm and tell myself " this too shall pass " :)

so that I was able to not give attention to the tantrum since the tantrum is

much less effective without an audience.

My daughter ALWAYS had a tantrum when we changed diapers and it took us at least

10 or 15 minutes to change. I do believe also this was related to sensory

issues because it we had some trouble at the beginning when she was potty

training but once I put her in clothes with the right texture (she only uses

what she calls the " silky soft " underwear) then all problems with potty training

disappeared.

I also tell her " not now " instead of no and I still do that today mostly out of

habit I suppose. And there are times occassionally that she also still tells me

" NO " and withdraws. It hurts my feelings and I used to take it personal. But

now she says it much more calmly than it used to be when she was younger. And

when she says " NO " and goes back into her room, I tell myself, " What she really

means is that she's not in control of her emotions yet. " It may seem silly to

be doing all this talking to myself, but it keeps my sanity. :)

I don't really know how much of it is 2 year old behavior and how much of it is

sensory. What I do know is that it DOES get better!!! I enjoy those days when

she is an angel and get through the ones where she's a nightmare, and the older

she gets, the less frequent those days are!

That's wonderful about your son's speech!!! I do not know about carbs and

haven't heard about their effect on behavior. I do know of a site that may have

some information about it. This site offers some information about PDD and

Autism specifically but deals with sensory issues and many related topics and

what I love is about it is the message board for parents with kids with PDD to

communicate. The site is at: http://www.nwfl.net/jaynamom/jayna2.html

Please feel free to email me any time. I'd love to hear how your son is doing,

and also if you find any new information, or please email if you just want to

say hi.

Best Wishes!

T97s@...

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Hey !!

THANK YOU!! Thank you so much for the support - sometimes I don't know when I

am doing the " right " things and when I am goofing up - thank you so much for the

vote of confidence!!

Hey - how is the support group going in Atlanta? Is the next meeting coming up

anytime soon?

Carnell

North Carolina

>, What an awesome response you gave to Eileen! I wish that I had known

>six moths ago about what you were saying when you told your son " no. " Once I

>figure out that my son thought that I wasn't understanding him when I told

>him no things got a lot better for us also. I have printed your email to

>refer to when I am feeling alone and when I need inspiration. Your son is

>lucky to have such a loving and supportive Mom.

>: Mom to Spencer age 3 (Moderate Expressive Language Disorder) and Audrey

>7 who is so helpful with her very loved little brother

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  • 9 months later...

Hi and Welcome! You will find a lot of great

listeners here who understanding what you are going

through because we are all in the boat with you.

I have had TMJ for over 30 years and have had three

surgeries. You could have bone spurs in your jaw

joint or a disc that has slipped. See an oral

surgeon. They can do so much for you. I had my first

surgery at 26 and 2 more after 40. They can

cautherize the little nerves that cause the pain. It

has worked for me wonderfully! You may not be ready

for surgery but you could be establishing a

relationship with an oral surgeon in case of emergency

(mine locked up one night and I couldn't open it more

than 1/2 " ). They can also make you a split for

nighttime that helps if you clinch or grind at night

or give you a jawjack to stretch your jaw. If you

have any further questions, write and I'll try to

answer them. Iris

--- lsch99@... wrote:

> I am new to this group. I was recently diagnosed

> with RA. I have been in

> pain for several months now and have finally gotten

> in to see a

> Rheumatologist. He has started me on 2 - 200 mg.

> tablets of

> hydroxychloroquine and 1 tablet of bextra daily. If

> it is working it doing

> so very slowly. My jaw has been hurting terribly

> and for a while I couldn't

> open my mouth or chew. Right now it is just achy.

> Is this a medicine that

> is used for RA?

>

> Thanks

> in Rochester, NY

>

__________________________________________________

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Hi :

Welcome to the group! I too was first prescribed

Plaquenil (hydrochloroquine) and Motrin when diagnosed

with RA three years ago. I also was on Prednisone

until the Plaquenil kicked in - it took about 4 months

to really begin to feel a difference. Plaquenil has

the least amount of side effects as far as your liver

is concerned. The main side effect is damage to the

retina with prolonged use - but that is very rare -

and you need to get a funduscopic eye examination

every six months or so while you are on the medication

to monitor any changes that might occur in your

retina. I was able to do well on Plaquenil and Motrin

for almost two and a half years and then the RA became

aggressive again and I am now on MTX, Arava and

Bextra.

I hope that the Plaquenil begins to help you soon - it

does take a while to kick in but all medications seem

to do that.

Kathe in CA

__________________________________________________

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