RE: I need some guidance

March 15, 2001

Dear J -

I also became concerned about my son's speech at 15 mos - my Ped had me wait

it out another 3 months because he felt my son was just a " late talker " -

Of course come to find out he was not a LATE TALKER -

and as a mom we sometimes know these things - it just takes a good PED to

understand that -

Have you had someone come and evaluate your daughter for possible services

such as Speech Therapy and possibly Occupational Therapy ? There are free

services for everyone if you are in US - my son receives therapy for what

they call " global delays " - he also does not speak very well - He is 2 years

7 months and the Speech therapy and just the ability to talk to someone about

his speech issues is a big help -

Sometimes you have to tell the PED exactly what you want - I(most ped's are

ignorant when it comes to services available and you have to hunt these

numbers down in most cases ) have had to ask for audiological tests as well

as the recent referral to the neuro - I know they mean well but the sooner

you can get a DX or some answers the sooner you can start the appropriate

therapies needed to get your daughter talking.

Start with health services check in the front of your white pages or yellow

pages -

Ask about getting your daughter evaluated - they should be able to make an

immediate appt within a week or two to see you and your daughter either in

your home or at a clinic -

It also helps when they come to have your daughter's baby book handy - they

ask many questions about her development - such as if she babbled - when she

first spoke - when she rolled over - sat up - stood up - walked - etc -

Once assigned a case worker keep calling and find out how soon services can

begin - sometimes you mysteriously get lost in the shuffle and you want the

services to start as soon as possible !!

Good Luck

Mom to:

April 15, 1994 Full Term -

Alec July 26, 1998 -2 lbs 14 oz

Born at 29 weeks due to Pregnancy Induced Hypertension - He has Sensory

integration dysfunction - Social & emotionally delays - Speech delays -

Currently attending a preschool therapy program 4 days per week for 3 hours

per day

Undiagnosed at this point -

Seeking DX April 20 when we see a nuerologist

March 16, 2001

Hi,

I'm Pam and my son Corey (now 3 yrs. 4mths) sounds much like your daughter.

He was a very quiet baby. He very rarely cried and when he should have been

making cooing sounds, he wasn't. The pediatrician along with everyone else

told us to wait that he would talk when he was ready. By the time he was 15

months I knew something was wrong and had started doing research myself. I

found the Apraxia website and knew immediately this was what was wrong. We

finally switched to a new pediatrician that would give us the necessary

referral for a speech and hearing evaluation. We then started ST when he

was 2 yrs old 2 times per week. My point is, your the mother and you know

if there is something wrong with your child. Do not let others - even a

doctor - tell you to wait it out. Insist that you know there is a problem

and insist on testing for your child. The earlier you start the better.

Good luck.

Pam

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

From: tagtiger@... [mailto:tagtiger@...]

March 16, 2001

J. Tiger -

I have been where you are now and know how scary and emotional it is. If

you would like to read my son's story I have a website at

www.verbaldyspraxia.com. I too started asking Dr.'s for help at 18 months

of age and was repeatedly told by many different dr.'s that it was my fault

he was not talking and nothing was developmentally wrong. Finally at the

age of 2 1/2 I took matters into my own hands and went to a major hospital

(Duke University) and had him tested by the speech department. Sure enough,

he has severe Verbal Dyspraxia. The first thing I would do is have your

daughter's hearing tested - that will usually be the first question that

anyone asks you, so since you will have to get it done anyway, better to do

it now. Next, most Speech facilities and/or speech departments in hospitals

have FREE speech evaluations. They usually only last 30 minutes and a

speech professional can let you know if further testing is necessary. I

would ask the pediatrician if he has anyone he/she recommends for a speech

evaluation - if he is uncooperative (like ours was) find one yourself - you

can always change if you are not happy with them once you have a diagnosis.

Remember - you know your child better than ANYONE. You are a wonderful

parent for being such a strong advocate for your daughter, and doing what is

necessary to help her. Listen to your instincts and follow them.........

Good Luck and if you would like more information, please e-mail me and I

will be happy to help in anyway I can.

North Carolina

[ ] I need some guidance

> I have a daughter who turned two in Febuary. She has always been a

> quite child . When she was about a year and a half I started to

> become conceirned. She seemed to be slipping back " forgetting " the

> few words that she could speak. I brought this up at her 18 month

> check up and they told me to wait it out. She is now two and she

> doesn't say any words at all. She speaks what sometimes sounds like a

> sentence (ex Da-dA-dA-da?)and she often grunts. She understands what

> I'm saying to her and she can complete tasks. I find she wines and

> throws a lot of tantrums. I often cry myself to sleep wondering what

> I can do to help her. It pains me to see the look in her eyes when I

> ask her a question, she wants to answer me but there's something in

> her holding her back. She usually purses her lip or if I'm lucky she

> may say unt-uh. She goes to see the pediatrician in two weeks and I'm

> wondering if there's any special way of handling this. I'm so sick of

> everyone telling me that she'll grow out of it and that such and

> suches kid didn't talk until he was three. I know there is something

> wrong and I'm hoping there is help out there. thank you for taking

> the time to read this.

> Sincerly,

> J. Tiger

>

March 16, 2001

go with your gut and get a new doctor.

March 16, 2001

J,

Our son is 4 and currently doesn't say more than about 5 words on a regular

basis. We too were told to " wait it out " . While it is true that many kids

just start talking late I feel now that waiting it out is a BIG mistake.

Your child may be fine and is just going to start talking late. My first

advice would be to join 2 other egroups. Late Talking Kids [latetalkkids]

and Late Talkers [latetalkers]. The first group is run buy a wonderful

couple that do research into late talking at Vanderbilt University. The 2nd

group is a list of people with late talking children. These two list will

be invaluable in providing you with information and advice.

The first thing I would do is have your daughter's ears and hearing checked.

Ear infections are a common cause of late talking. By federal law all

states must have an early intervention program to help treat developmental

delays. Your can contact your local early intervention program for help. I

would join the 2 lists that I mentioned before and sent the same email you

sent to this group. I'm sure you will get a lot of advice. There are a

great many symptoms that delayed children exhibit. Some of them are hard to

spot, some are not. I would also start educating myself on the symptoms of

the possible causes of delayed speech. There are almost as many reasons for

late talking as there are people who can dream them up. Start searching the

internet and the library for all the information you can find.

Lastly, if you doctor continues to take a wait and see attitude, I would

find a new doctor. I wish I'd dumped ours 2 years ago!

Your child is probably just going to start talking late. That is usually

the case. But if there is a physical reason for the delay, the sooner you

identify the problem the sooner you can take steps to correct it.

Bill and Charlotte

Toney, Alabama

[ ] I need some guidance

I have a daughter who turned two in Febuary. She has always been a

quite child . When she was about a year and a half I started to

become conceirned. She seemed to be slipping back " forgetting " the

few words that she could speak. I brought this up at her 18 month

check up and they told me to wait it out. She is now two and she

doesn't say any words at all. She speaks what sometimes sounds like a

sentence (ex Da-dA-dA-da?)and she often grunts. She understands what

I'm saying to her and she can complete tasks. I find she wines and

throws a lot of tantrums. I often cry myself to sleep wondering what

I can do to help her. It pains me to see the look in her eyes when I

ask her a question, she wants to answer me but there's something in

her holding her back. She usually purses her lip or if I'm lucky she

may say unt-uh. She goes to see the pediatrician in two weeks and I'm

wondering if there's any special way of handling this. I'm so sick of

everyone telling me that she'll grow out of it and that such and

suches kid didn't talk until he was three. I know there is something

wrong and I'm hoping there is help out there. thank you for taking

the time to read this.

Sincerly,

J. Tiger

March 16, 2001

I could have written your story!

My daughter (she will be three next month) was also a very " quiet "

and " serious " baby who rarely babbled. I mentioned it to her

pediatrician at her 12-month, 18-month and 24-month checkups, but was

always told that she was just a late talker, isn't talking because

her brothers are doing the talking for her, she would eventually grow

out of it, etc. The pediatrician even told me once that my daughter

wasn't talking because she wasn't in daycare! (I told her that my

other kids weren't in daycare and they learned to talk just fine!) At

the 18-month checkup, the doctor asked if I wanted to have my

daughter's hearing checked?! (Duh!)

My daughter saw the ENT and everything checked out fine. The ENT also

told me that she was just a late talker, children develop at

different rates, not to worry about it, etc. I thought they knew best

(they were the doctors, after all!), so I *tried* not to worry.

A few months later, my husband came home from work and told me that a

co-worker's wife had brought their twins (same age as our daughter)

into work and they were both speaking in complete, intelligible

sentences. I had also begun to notice other children our daughter's

age who were talking in intelligible sentences. It was then that I

returned to the pediatrician and *demanded* a referral to a speech

therapist. She didn't argue with me this time.

We weren't in the speech therapist's office two minutes and she knew

there was a problem. She immediately asked us if our daughter had

always been a " mouth breather " (yes), if she snored (no) and if her

tonsils and adenoids had been checked by a pediatric ENT (no). The

SLP did an evaluation and recommended that we take our daughter to

the nearest children's hospital for an evaluation by a developmental

pediatrician and a pediatric ENT and begin intensive speech therapy

right away.

Initially, the SLP thought my daughter had dysarthria, which is a

motor speech disorder that results from muscular impairment. It's

possible that my daughter does have dysarthria. However, we won't

know for sure until she is evaluated by the development

pediatrician/neurologist. We've been on a very long waiting list to

see the specialist -- our appointment is July 12th.

She did see the pediatric ENT and her hearing, tonsils and adenoids

are fine.

We had been going to ST three times a week for about a month when the

SLP told me about verbal apraxia (she called it developmental apraxia

of speech). She is a proponent of the Kaufmann method and has

attended the workshop. She was uncomfortable giving a diagnosis of

verbal apraxia in the beginning because my daughter wasn't saying

enough words to be adequately tested. However, she felt very strongly

that my daughter had verbal apraxia and has been treating her as such.

My daughter has been going to speech therapy three times a week for

three months and her progress has been remarkable -- nothing short of

a miracle, in my opinion. At Christmas, she could say only one

word: " no. " In January, I heard my daughter say " mommy " for the first

time. It brought tears to my eyes. And now she is putting together 3-

and 4-word sentences that are about 50% intelligible.

In hindsight, I should have demanded an evaluation by a speech

therapist much sooner, but I was naive. I had heard stories of

relatives who didn't talk until three, I trusted the doctors, I just

didn't know any better. But I don't spend any time beating myself up

over it. Instead, I spend that time working with my daughter.

I was blessed to find a wonderful SLP who knows about apraxia and,

more important, knows how to treat it. I was also blessed, as we all

were, to find the apraxia.cc website and this discussion list. (Thank

you, .)

Trust your instincts. You know something is wrong with your

daughter's speech. Do some research and find a SLP in your area who

knows all about verbal apraxia (and is in your insurance network, if

necessary). Read everything you can find about verbal apraxia. When

you return to the pediatrician's office, demand a referral to an ENT

to check your daughter's hearing and a referral to that specific

speech therapist.

You are your daughter's best (and sometimes only) advocate. Take it

from someone who has been there. Don't wait any longer. The sooner

you get her some help, the sooner you will hear the words, " I love

you, Mommy. "

Best of luck to you.

Ronda

March 17, 2001

> [ ] I need some guidance

>

>I have a daughter who turned two in Febuary. She has always been a

>quite child . When she was about a year and a half I started to

>become conceirned. She seemed to be slipping back " forgetting " the

>few words that she could speak. I brought this up at her 18 month

>check up and they told me to wait it out. She is now two and she

>doesn't say any words at all. She speaks what sometimes sounds like a

>sentence (ex Da-dA-dA-da?)and she often grunts. She understands what

>I'm saying to her and she can complete tasks. I find she wines and

>throws a lot of tantrums. I often cry myself to sleep wondering what

>I can do to help her. It pains me to see the look in her eyes when I

>ask her a question, she wants to answer me but there's something in

>her holding her back. She usually purses her lip or if I'm lucky she

>may say unt-uh. She goes to see the pediatrician in two weeks and I'm

>wondering if there's any special way of handling this. I'm so sick of

>everyone telling me that she'll grow out of it and that such and

>suches kid didn't talk until he was three. I know there is something

>wrong and I'm hoping there is help out there. thank you for taking

>the time to read this.

>Sincerly,

>J. Tiger

J.:

I would emphasize the regression in language you describe. You don't

mention this, but is she social with other children - does she approach

other children and nonverbally try to engage them ? Can she use " body

language " to express herself effectively ? If your pediatrician does not

initiate the referral process, contact your local Project Child Find to

request an Early Intervention assessment - it is free, and the interventions

are free. Your daughter won't be " labeled " , and you will probably get

expert advise from the therapists who evaluate her. Have her hearing tested

as well - that isn't usually included in the EI assessment.

Larry Laveman, MD

Consultant, CHERAB

http://www.apraxia.cc

December 1, 2010

I'm sorry to hear about your situation. It's very common. And ASD kids can be

loving and affectionate. ASD comes in all shapes and sizes so to speak. Some

kids are verbal, some are not. Some affectionate, some less so.

If you don't think he has yeast...this shouldn't be a problem with chelation.

But almost all ASD or ASD like kids have some gut issues that don't seem obvious

until you start treating them. The description of symptoms in infancy that

required medication and special formula indicate a problem with digestion. This

is pretty typical for a vaccine/mercury child. Not all kids miss milestones. My

son hit all his as well. First words at 9 months....but yet he is on the

spectrum. A child who does not have words at 18 months is not meeting all

milestones.

Viral and yeast issues were never obvious to us either until I started killing

the stuff off. Then we realized that his constipation, dry skin and " being his

own world " were due to yeast, milk allergy etc.

And honestly the non verbal thing is a big deal and does indicate a problem. No

parent wants to admit their kid is ASD but....there is definitely a problem.

Have you done a doctors data hair elements test yet?

I would get one of those. See what metals he has. Then you can look at low dose

Andy Cutler chelation. Yeast if it should occur is completely controllable with

natural antifungals and probiotics. it is a means to an end. Yes, you would be

getting yourself into a lot of work. No lie about that. Chelation is work,

giving supplements is work. But in the long run how much work is it going to be

to have a non verbal 15 year old to take care of?

Get the hair test, and try 5 rounds. See what changes you see.

Jan

>

> Ok so my son had gastro issues from birth, more noticeable after our 2 week

visit and he would " flair up " after doctors visits. He was given zantac, didn't

work. Then was given prevacid after that. I removed him from breast milk and he

had alimentum formula with rice cereal. That combo worked for the most part.

He had a reaction a vaccine(if my memory is right it was the dTAP one). Of

course the doctor was like oh that can be a " normal " side effect. Well he hit

every milestone. Was saying ma and da by 6 months. Till we got a vaccine at 7

months. He stopped talking and it didn't help I was in denial that a vaccine

really could do that. Milestones were always met so I didn't worry. Then at 18

months he was still not verbal. I then began thinking he could be autistic.

Everyone around us said oh no he's to loving, and out going to be autistic.

Finally at 2 years we got him into early intervention and that's when SPD was

brought up. I then was in denial until I decided to educate myself. My son had

sensory seeking moments and would go get lost in his world.(Which I knew he

would go play on his own and again everyone said how lucky I was that he was ok

playing with others or alone). I was told due to the few things he did do one

might say he could be ASD or SPD. So thts when I seeked help thru a

chiropractor in the recovery of my son.

>

> Even though he has autistic like traits, he has so many that aren't. He

doesn't have leaky gut, not allergic to anything. List goes on. I haven't seen

any signs of yeast or viral activity. No " behavioral " issues other than staying

focus on things he's un interested in(school work).

>

> So I've been wanting to do DMSA(chiropractor does too). But I'm scared of

causing a yeast flair up or any of the other side effects that most have. And

always having it.

>

> Any ideas/advice?

>

> Is it pretty much trial and error thing?

>

> Just trying to understand what I'm getting myself into.

> Sent from my BlackBerry® smartphone with Nextel Direct Connect

>

December 1, 2010

So is there a chance that even if he has a yeast issue during chelation that it

can go away(after treatment of course) for good? Or at least back to where we

are now?

We have don't two hair tests, a cdsa(stool test). And. From the hair results

were given detox drops, probiotics, enzymes, and a multivitamin. Can't get him

to he fish oil :/ but a week after starting a year ago he started to speak. So

I know this will help/work. Just want to make sure I fully understand it all.

We did get an upper gi done at 6 months since " all of it was in my head " about

his tummy issues and it digests slower than average. Which also stated my the

results of the csda(what ever the stool test is called).

Sorry on my phone and don't have the kiddos binder of all the info on me

Thank yo much for a response! Its really appreciated!

Sent from my BlackBerry® smartphone with Nextel Direct Connect

[ ] Re: I need some guidance