Jump to content
RemedySpot.com

Re: CAN YOU PLS GIVE ME SOME ADVICE

Rate this topic


Guest guest

Recommended Posts

Please respond to this message here on the board or through email.

Thanks,

Tina

" antonitsaantoniou " <antonitsaantoniou@...>

Hi,

I live in a small island in the medeteranean sea and I have a 6.7

year old son with no speech.We tried everything but nothing seems to

help.At the age of 2.5 we started him on speech therapy for about 5

months and he started saying some words.Then we found an educational

phycologist who suggested that signs would promote his speech.So me

and my son traveled to Greece and stayed there for 3 months to start

him on signs, since no one here knew anything about that,but we

stopped speech therapy as I was told it was not needed. Strangely as

soon as we started signs his words stopped.

At this school in Greece he picked up a constant humming sound from

another kid, which remains until this day ,only worse.He was learning

signs but no words.They told me that we needed to build on his

receptive first and then he will speak.

The phychatrist of the centre said that he could not give me a

diagnosis but he was sure it was not autism.But after we tryied

ritalin for a few days and I didn't want to continue with it I left.

Back to my country I found a girl who could help us wiyh signs, but

after a while the signs were too many and my son who doesn't have

good fine motor skills (or gross motor and co ordination )was not

able to do them very well.She said that we'll have to shape it,but he

just couldn'tdo them correctly.He knew the signs, but could not do

them proberly.Plus she was teaching him 10 new signs every other

week, which made it more difficult for him.

Now after 3 years we are trying to switch into picture exchange

communication system which he picked up fast but he does not like it.

A year ago after suspecting that he might have apraxia I joined this

group.I also found a therapist who could give him oral motor therapy

once a week.Now he can say the sounds he learned which are only few -

a,o,ou,i,p,m,f but tries to say more.

The speech therapist at school after I said that I believe he has

apraxia now says she thinks he has ,cause he knows the words but

doesn't know how to use his mouth to tell them.

As far as the supplementetion is concerned I started biomed and

gfcfsf diet 2 years ago, with a DAN doctor in the US.We changed

doctor few months back since we found one in Turkey which is nearer

to us.

We tested for heavy metals and his Lead levels were 9 times the

acceptable ,so we started chelation .We visited Turkey twice were we

stayed for about a month each time and did 100 HBOT sessions.

He takes a lot of supplements for 2 years now,but he speech is not

making any progress.Plus he became more hyper and his poor focus and

concentration is almost non excistant now.

I believe that he is severly apraxic and because he was not getting

treatment when he was younger, it's worse now.

Can you please help? I know that I can't see any of the specialist

you might suggest but any advice would be appreciated.On supplements

or excersises or links to specialists I can speak over the phone.

We have nearly spend $150.000 over the past 4 years and we have no

results,and this for a child who the numerous specialists I took him

told me not to worry ,he'll be speaking soon, or he is so bright

there is nothing wrong with him.Although 2 of them did say he had

autistic characteristics and one of them said he has autism.

But I don't care about the label as long as I can help my child

speak,but I think it's this mix up with the diagnosis that brought us

were we are today.

Sorry Iam writing off list but this was very long and I didn't think

others would be interested.Next time I'll use the group mail.

Thank you in advance

Antonitsa

Link to comment
Share on other sites

HI TINA,

THANKS

>

> Please respond to this message here on the board or through email.

> Thanks,

> Tina

> " antonitsaantoniou " <antonitsaantoniou@...>

>

> Hi,

> I live in a small island in the medeteranean sea and I have a 6.7

> year old son with no speech.We tried everything but nothing seems to

> help.At the age of 2.5 we started him on speech therapy for about 5

> months and he started saying some words.Then we found an educational

> phycologist who suggested that signs would promote his speech.So me

> and my son traveled to Greece and stayed there for 3 months to start

> him on signs, since no one here knew anything about that,but we

> stopped speech therapy as I was told it was not needed. Strangely as

> soon as we started signs his words stopped.

> At this school in Greece he picked up a constant humming sound from

> another kid, which remains until this day ,only worse.He was

learning

> signs but no words.They told me that we needed to build on his

> receptive first and then he will speak.

> The phychatrist of the centre said that he could not give me a

> diagnosis but he was sure it was not autism.But after we tryied

> ritalin for a few days and I didn't want to continue with it I left.

> Back to my country I found a girl who could help us wiyh signs, but

> after a while the signs were too many and my son who doesn't have

> good fine motor skills (or gross motor and co ordination )was not

> able to do them very well.She said that we'll have to shape it,but

he

> just couldn'tdo them correctly.He knew the signs, but could not do

> them proberly.Plus she was teaching him 10 new signs every other

> week, which made it more difficult for him.

> Now after 3 years we are trying to switch into picture exchange

> communication system which he picked up fast but he does not like

it.

> A year ago after suspecting that he might have apraxia I joined this

> group.I also found a therapist who could give him oral motor therapy

> once a week.Now he can say the sounds he learned which are only

few -

> a,o,ou,i,p,m,f but tries to say more.

> The speech therapist at school after I said that I believe he has

> apraxia now says she thinks he has ,cause he knows the words but

> doesn't know how to use his mouth to tell them.

> As far as the supplementetion is concerned I started biomed and

> gfcfsf diet 2 years ago, with a DAN doctor in the US.We changed

> doctor few months back since we found one in Turkey which is nearer

> to us.

> We tested for heavy metals and his Lead levels were 9 times the

> acceptable ,so we started chelation .We visited Turkey twice were we

> stayed for about a month each time and did 100 HBOT sessions.

> He takes a lot of supplements for 2 years now,but he speech is not

> making any progress.Plus he became more hyper and his poor focus and

> concentration is almost non excistant now.

> I believe that he is severly apraxic and because he was not getting

> treatment when he was younger, it's worse now.

> Can you please help? I know that I can't see any of the specialist

> you might suggest but any advice would be appreciated.On supplements

> or excersises or links to specialists I can speak over the phone.

> We have nearly spend $150.000 over the past 4 years and we have no

> results,and this for a child who the numerous specialists I took him

> told me not to worry ,he'll be speaking soon, or he is so bright

> there is nothing wrong with him.Although 2 of them did say he had

> autistic characteristics and one of them said he has autism.

> But I don't care about the label as long as I can help my child

> speak,but I think it's this mix up with the diagnosis that brought

us

> were we are today.

>

> Sorry Iam writing off list but this was very long and I didn't think

> others would be interested.Next time I'll use the group mail.

>

> Thank you in advance

> Antonitsa

>

Link to comment
Share on other sites

Hi Antonitsa,

Did you read The Late Talker?

My heart goes out to you. If the following message appears a bit

strong it is based on the direction of this group recently since you

say you have been a member here for a year and your poor child is

nonverbal at almost 7 years old and your family has spent way more money

than most of us -150 thousand in 4 years on alternatives and

misinformation and it appears missed out on all the proven

traditionals and the basics. If you are reading this message and

want to help a new member and help this group become more rounded

this is the perfect family for us to reach out and help as a group.

Let's see what we can do to help this mother and her son. Please,

let's use this message as a wake up call to all of us that have

children that are verbal and that are doing well that someone was

there to help us in the early days with basic and proven information -

and that it appears nobody was there for this unfortunate family.

And Antonitsa I want you to keep us up to date as much as possible on

any changes to your son. I want to see if we can now get your son

the help he so desperately needs.

There is some scientific backing that sign language triggers the same

areas of the brain as speech -however the jury is out whether

advanced vs. simple sign language is appropriate for all with

communication impairments and I know none who would suggest that sign

language alone is the only therapy needed by anyone but a child that

is hearing impaired or deaf who does not have an underlying speech

impairment -well none outside of your story. Is your child deaf?

There are positive reasons for sign with an apraxic child don't get

me wrong -but not instead of speech therapy! And if your child does

have a hearing impairment there is the oral based school of thought

that one can learn sign at any age -but if a deaf child isn't verbal

by the age of 5 they probably never will be verbal. In the oral deaf

world -sign language is understood but not encouraged.

I know there are some Dan professionals in this group that are

responsible and very caring people. But being Dan is unregulated and

just about anyone can be a Dan if they attend a conference or

something be very careful about this unless you are at least already

knowledgeable about the basics and have the extra money and time many

of us don't need to spend. Also being that a Dan person can be

anyone from a social worker who is not an MD or PhD (so shouldn't be

called a " doctor " ) to a respected medical doctor (and then can be

called a Dan doctor) there are no set protocols- I have no idea what

it means. I do know that at times in this group the passion for Dan

borders on cultish. Just because you believe in a therapy or method

doesn't mean you like every aspect of it and jump on anyone who

questions any aspect of it. Not saying parts aren't credible-but may

not be necessary for most.

I do know that I had two children that were in therapy almost daily -

one with very severe injuries from birth trauma and one apraxic -and

we did do both traditional and alternative and we spent no where near

the amount of money you spent in 4 years! 150 thousand dollars? How

does your medical care work where you live? What did the majority of

that money go towards?!!! Was anything covered or is it all out of

pocket? Are there other children like your son that live around you

for you to start a support group? I and others would help you. Are

there professionals in this group that can reach out to help

Antonitsa and her son- please answer her here or private.

Antonitsa as I always say - if your child isn't progressing in a few

months examine therapy, therapist, diagnosis again. If a

professional is a good one and they believe they are not making

headway with a child they will refer that child to another

professional -they won't just keep going and going and going and

sucking you and your family dry of money!

And please do let those of us that don't know what type of

supplements are you giving your child? I know the 'basic' fish oil

formula that works for most and it's not high DHA and it's not cod

liver oil it's and omega 3/6 formula -either proEFA, EyeQ or Efalex.

if you are going to use Coromega you can add a bit of primrose or

borage seed oil to make it an omega 3/6. If you are giving your

child the right formula (proEFA, EyeQ or Efalex) and you add cod

liver oil or any other DHA (as Holly's DAN had her do and then her child

stopped progressing) that changes the formula and raises the Omega

3 -but the wrong omega 3 -it raises the DHA not EPA and you probably will

stop seeing progression just like others in this group that follow

this false advice. As far as some of the unknown supplements -please

list them for us so we can as a group know what they are.

If I were in a situation that I had that amount of money to spend on

alternative therapies in four years I'd first make sure of the

following:

1. My child had an appropriate diagnosis from a respected

neurodevelopmental medical doctor like Dr. Marilyn Agin -my co author

of The Late Talker. At her office I know she works with speech

therapists as well and the evaluation is intensive. Her contact info

Marilyn Agin, MD

79 Laight Street #1A

New York, NY 10013

212-274-9180 (O)

212-219-3688 (F)

2. I would make sure that my child received daily appropriate speech

therapy and occupational therapy too. If needed I would also look at

physical therapy. There are things to look for in a good therapist.

3. Being your child is profound impaired at this point in regards to

his expressive ability -do you have an augmentative device for him?

If not he needs one today.

4. I'd make sure that my son was getting a private tutor to either

bring him up to speed or make sure he stays there based on the fact

he is nonverbal. (what grade is your child in now and on what level

academically -what type of placement) If needed I'd pay for an

advocate or special ed attorney -but also an appointment with someone

like Dr. Agin could help secure proper therapy and placement in the

US -not sure how it works in your part of the world.

4. Yes continue some of the alternatives that you believe help -but

I'd stop all the expensive supplements and treatments and fire every

single professional that is working with your son and start over.

Please again continue to keep us up to speed on what is going on.

Please don't hesitate to ask us any question no matter how silly you

believe it to be. I so wish I could give both you and your son a hug

right now and say I'm so sorry. Because of the direction of this

group part of me feels responsible. I won't censor it -but I'm again

pleading with everyone to help me keep this group rounded so that

situations like this don't happen again. That means everyone -not

just one view.

We are here for you!

=====

Link to comment
Share on other sites

I have some questions regarding DAN Dr's. My son has issues with gluten. I

have posted before that he craves carbohydrates and when he eats too much, he

gets a red yeast infection that sometimes bleeds. He has not had any pizza

for three weeks, he doesn't care for the gluten free kind although I do still

offer it to him. My Father is a retired physician and from the description

that is given for Celiac's disease he just does not feel that these symptoms

fit my son. We have an appointment with a DAN Dr in June. He is also an MD,

he was in family medicine before. Most or all of these Dr's don't take

insurance and I don't even want to know how much they charge I am scared. I

worked for a Chiropractor for a few years and I felt the use of some of the

supplements were a waste of money. Here are the things I know, my son has

apraxia, PDD NOS (Autism spectrum) and symptoms from too much gluten. He has

great

eye contact, social relationships, but is severely speech delayed in the

expressive area do to the apraxia. He is getting speech at our home once a

week

from a speech therapist that specializes in Apraxia, he is in early childhood

education and is getting OT and speech there, he is going to start OT next

week once a week at a facility near our home. He also has an Autism specialist

come to the house once a week. I have been trying to do a lot of reading

regarding these special diets, etc. I do believe there is something to this for

I don' think my son would get this red irritation if he didn't have a

problem. I don't want to waste money and I don't want to upset my son, he

doesn't

like Dr's much, he is four. I have concerns about the MMR shots, etc that

children get when they are five, I was told to do a titer. Here is the

question. Can a DAN do something that I 's mother cannot??? Blood tests

are

ordered and you do them at your Pediatricians office. I know children can

benefit from some supplements, especially if they are not eating dairy. How do

you know if dairy is a problem, is there a test for that? My son doesn't like

milk, but loves ice cream, I have been giving him soy ice cream which he

will eat, but then I read that that can cause problems with the digestive tract

if too much soy is eaten. I guess my question is should I get started with

this DAN thing, or skip it, now I am confused.

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

Link to comment
Share on other sites

<<Because of the direction of this group part of me feels

responsible. I won't censor it -but I'm again pleading with everyone

to help me keep this group rounded so that situations like this

don't happen again. That means everyone -not just one view.>>

,

As always, you've given some really great substantive advice here.

I too am hopeful that some/all/any of it helps this mother and her

son. She appears to have gone to great lengths to find help and an

answer that works, which is what I see every mother here doing in

her own way. I so wish her the best in her continuing exploration

of professionals, alternatives, diagnoses, theories and treatments

for her son.

I, however, fail to see how your decision not to censor the group

has contributed in any way to the difficulties faced by this mother

and child. Please try not to be so hard on yourself. Laying blame -

- on yourself or this group, its direction, or any of its member(s) -

- helps no one and makes no sense to me in this context.

Carmen

>

> Hi Antonitsa,

>

> Did you read The Late Talker?

>

> My heart goes out to you. If the following message appears a bit

> strong it is based on the direction of this group recently since

you

> say you have been a member here for a year and your poor child is

> nonverbal at almost 7 years old and your family has spent way more

money

> than most of us -150 thousand in 4 years on alternatives and

> misinformation and it appears missed out on all the proven

> traditionals and the basics. If you are reading this message and

> want to help a new member and help this group become more rounded

> this is the perfect family for us to reach out and help as a group.

> Let's see what we can do to help this mother and her son. Please,

> let's use this message as a wake up call to all of us that have

> children that are verbal and that are doing well that someone was

> there to help us in the early days with basic and proven

information -

> and that it appears nobody was there for this unfortunate family.

> And Antonitsa I want you to keep us up to date as much as possible

on

> any changes to your son. I want to see if we can now get your son

> the help he so desperately needs.

>

> There is some scientific backing that sign language triggers the

same

> areas of the brain as speech -however the jury is out whether

> advanced vs. simple sign language is appropriate for all with

> communication impairments and I know none who would suggest that

sign

> language alone is the only therapy needed by anyone but a child

that

> is hearing impaired or deaf who does not have an underlying speech

> impairment -well none outside of your story. Is your child deaf?

> There are positive reasons for sign with an apraxic child don't get

> me wrong -but not instead of speech therapy! And if your child

does

> have a hearing impairment there is the oral based school of thought

> that one can learn sign at any age -but if a deaf child isn't

verbal

> by the age of 5 they probably never will be verbal. In the oral

deaf

> world -sign language is understood but not encouraged.

>

> I know there are some Dan professionals in this group that are

> responsible and very caring people. But being Dan is unregulated

and

> just about anyone can be a Dan if they attend a conference or

> something be very careful about this unless you are at least

already

> knowledgeable about the basics and have the extra money and time

many

> of us don't need to spend. Also being that a Dan person can be

> anyone from a social worker who is not an MD or PhD (so shouldn't

be

> called a " doctor " ) to a respected medical doctor (and then can be

> called a Dan doctor) there are no set protocols- I have no idea

what

> it means. I do know that at times in this group the passion for

Dan

> borders on cultish. Just because you believe in a therapy or

method

> doesn't mean you like every aspect of it and jump on anyone who

> questions any aspect of it. Not saying parts aren't credible-but

may

> not be necessary for most.

>

> I do know that I had two children that were in therapy almost

daily -

> one with very severe injuries from birth trauma and one apraxic -

and

> we did do both traditional and alternative and we spent no where

near

> the amount of money you spent in 4 years! 150 thousand dollars?

How

> does your medical care work where you live? What did the majority

of

> that money go towards?!!! Was anything covered or is it all out of

> pocket? Are there other children like your son that live around

you

> for you to start a support group? I and others would help you.

Are

> there professionals in this group that can reach out to help

> Antonitsa and her son- please answer her here or private.

>

> Antonitsa as I always say - if your child isn't progressing in a

few

> months examine therapy, therapist, diagnosis again. If a

> professional is a good one and they believe they are not making

> headway with a child they will refer that child to another

> professional -they won't just keep going and going and going and

> sucking you and your family dry of money!

>

> And please do let those of us that don't know what type of

> supplements are you giving your child? I know the 'basic' fish oil

> formula that works for most and it's not high DHA and it's not cod

> liver oil it's and omega 3/6 formula -either proEFA, EyeQ or

Efalex.

> if you are going to use Coromega you can add a bit of primrose or

> borage seed oil to make it an omega 3/6. If you are giving your

> child the right formula (proEFA, EyeQ or Efalex) and you add cod

> liver oil or any other DHA (as Holly's DAN had her do and then her

child

> stopped progressing) that changes the formula and raises the Omega

> 3 -but the wrong omega 3 -it raises the DHA not EPA and you

probably will

> stop seeing progression just like others in this group that follow

> this false advice. As far as some of the unknown supplements -

please

> list them for us so we can as a group know what they are.

>

> If I were in a situation that I had that amount of money to spend

on

> alternative therapies in four years I'd first make sure of the

> following:

>

> 1. My child had an appropriate diagnosis from a respected

> neurodevelopmental medical doctor like Dr. Marilyn Agin -my co

author

> of The Late Talker. At her office I know she works with speech

> therapists as well and the evaluation is intensive. Her contact

info

>

> Marilyn Agin, MD

> 79 Laight Street #1A

> New York, NY 10013

> 212-274-9180 (O)

> 212-219-3688 (F)

>

> 2. I would make sure that my child received daily appropriate

speech

> therapy and occupational therapy too. If needed I would also look

at

> physical therapy. There are things to look for in a good

therapist.

>

> 3. Being your child is profound impaired at this point in regards

to

> his expressive ability -do you have an augmentative device for him?

> If not he needs one today.

>

> 4. I'd make sure that my son was getting a private tutor to either

> bring him up to speed or make sure he stays there based on the fact

> he is nonverbal. (what grade is your child in now and on what

level

> academically -what type of placement) If needed I'd pay for an

> advocate or special ed attorney -but also an appointment with

someone

> like Dr. Agin could help secure proper therapy and placement in the

> US -not sure how it works in your part of the world.

>

> 4. Yes continue some of the alternatives that you believe help -

but

> I'd stop all the expensive supplements and treatments and fire

every

> single professional that is working with your son and start over.

>

> Please again continue to keep us up to speed on what is going on.

> Please don't hesitate to ask us any question no matter how silly

you

> believe it to be. I so wish I could give both you and your son a

hug

> right now and say I'm so sorry. Because of the direction of this

> group part of me feels responsible. I won't censor it -but I'm

again

> pleading with everyone to help me keep this group rounded so that

> situations like this don't happen again. That means everyone -not

> just one view.

>

> We are here for you!

>

>

> =====

>

Link to comment
Share on other sites

I am not sure I even understand this. This child is almost 7. Is the

implication that because in recent months the biomed options

discussed here had anything to do with all this child has been

through? It sounds like these interventions wee taken without the

benefit of this board and before this stuff was talked about.

This is where I a coming from:

As far as the supplementetion is concerned I started biomed and

> > > gfcfsf diet 2 years ago, with a DAN doctor in the US.We changed

> > > doctor few months back since we found one in Turkey which is

> nearer

> > > to us.

> > > We tested for heavy metals and his Lead levels were 9 times the

> > > acceptable ,so we started chelation .We visited Turkey twice

> were we

> > > stayed for about a month each time and did 100 HBOT sessions.

> > > He takes a lot of supplements for 2 years now,but he speech is

> not

> > > making any progress.Plus he became more hyper and his poor

focus

> and

> > > concentration is almost non excistant now.

> > > I believe that he is severly apraxic and because he was not

> getting

> > > treatment when he was younger, it's worse now.

> > > Can you please help? I know that I can't see any of the

> specialist

> > > you might suggest but any advice would be appreciated.On

> supplements

> > > or excersises or links to specialists I can speak over the

phone.

> > > We have nearly spend $150.000 over the past 4 years and we have

> no

> > > results,and this for a child who the numerous specialists.

Unless this kind of stuff was directed to her two years ago I am not

following. Part of the benefit of the exchange, and I am the first to

admit the negatives, the stuff is unstudied formally, is if someone

is taking this route or contemplating another person can say things

like I have heard here: " All he did was charge me a fortune, do a

bunch of things I never knew which helped and could not afford to

keep it up. "

Link to comment
Share on other sites

1) Can your father not answer any of this?

2) Why, if you want to know about celiac and milk, would you not see

a gastroenterologist first?

3) Have you talked to your pediatrician about any of this?

You have posted about this before. You don't just do these things,

you research them...you. Like is it the gluten in pizza? the cheese?

the tomatoe sauce? the vinegar?

There are several routes you can take and in my opinion, and it is

just that, the uneducated opinion of a mom, I would take them first,

as I have:

Discussing these things with the pediatrician, the allergist, testing

genetics, the gastroenterologist. All, by the way, covered by

insurance.

There is no easy way to know any of this but there are many, many

resources available to you for free and covered by insurance.

Specifically, at the library, on the internet, and in the doctors

office.

>

> I have some questions regarding DAN Dr's. My son has issues with

gluten. I

> have posted before that he craves carbohydrates and when he eats

too much, he

> gets a red yeast infection that sometimes bleeds. He has not had

any pizza

> for three weeks, he doesn't care for the gluten free kind although

I do still

> offer it to him. My Father is a retired physician and from the

description

> that is given for Celiac's disease he just does not feel that

these symptoms

> fit my son. We have an appointment with a DAN Dr in June. He is

also an MD,

> he was in family medicine before. Most or all of these Dr's don't

take

> insurance and I don't even want to know how much they charge I am

scared. I

> worked for a Chiropractor for a few years and I felt the use of

some of the

> supplements were a waste of money. Here are the things I know, my

son has

> apraxia, PDD NOS (Autism spectrum) and symptoms from too much

gluten. He has great

> eye contact, social relationships, but is severely speech delayed

in the

> expressive area do to the apraxia. He is getting speech at our

home once a week

> from a speech therapist that specializes in Apraxia, he is in

early childhood

> education and is getting OT and speech there, he is going to start

OT next

> week once a week at a facility near our home. He also has an

Autism specialist

> come to the house once a week. I have been trying to do a lot of

reading

> regarding these special diets, etc. I do believe there is

something to this for

> I don' think my son would get this red irritation if he didn't

have a

> problem. I don't want to waste money and I don't want to upset my

son, he doesn't

> like Dr's much, he is four. I have concerns about the MMR shots,

etc that

> children get when they are five, I was told to do a titer. Here

is the

> question. Can a DAN do something that I 's mother cannot???

Blood tests are

> ordered and you do them at your Pediatricians office. I know

children can

> benefit from some supplements, especially if they are not eating

dairy. How do

> you know if dairy is a problem, is there a test for that? My son

doesn't like

> milk, but loves ice cream, I have been giving him soy ice cream

which he

> will eat, but then I read that that can cause problems with the

digestive tract

> if too much soy is eaten. I guess my question is should I get

started with

> this DAN thing, or skip it, now I am confused.

>

>

>

> **************The year's hottest artists on the red carpet at the

Grammy

> Awards. Go to AOL Music.

> (http://music.aol.com/grammys?NCID=aolcmp00300000002565)

>

>

>

Link to comment
Share on other sites

Re: I know children can benefit from some supplements, especially if

they are not eating dairy.

Where did you hear this?

>

> I have some questions regarding DAN Dr's. My son has issues with

gluten. I

> have posted before that he craves carbohydrates and when he eats

too much, he

> gets a red yeast infection that sometimes bleeds. He has not had

any pizza

> for three weeks, he doesn't care for the gluten free kind although

I do still

> offer it to him. My Father is a retired physician and from the

description

> that is given for Celiac's disease he just does not feel that

these symptoms

> fit my son. We have an appointment with a DAN Dr in June. He is

also an MD,

> he was in family medicine before. Most or all of these Dr's don't

take

> insurance and I don't even want to know how much they charge I am

scared. I

> worked for a Chiropractor for a few years and I felt the use of

some of the

> supplements were a waste of money. Here are the things I know, my

son has

> apraxia, PDD NOS (Autism spectrum) and symptoms from too much

gluten. He has great

> eye contact, social relationships, but is severely speech delayed

in the

> expressive area do to the apraxia. He is getting speech at our

home once a week

> from a speech therapist that specializes in Apraxia, he is in

early childhood

> education and is getting OT and speech there, he is going to start

OT next

> week once a week at a facility near our home. He also has an

Autism specialist

> come to the house once a week. I have been trying to do a lot of

reading

> regarding these special diets, etc. I do believe there is

something to this for

> I don' think my son would get this red irritation if he didn't

have a

> problem. I don't want to waste money and I don't want to upset my

son, he doesn't

> like Dr's much, he is four. I have concerns about the MMR shots,

etc that

> children get when they are five, I was told to do a titer. Here

is the

> question. Can a DAN do something that I 's mother cannot???

Blood tests are

> ordered and you do them at your Pediatricians office. I know

children can

> benefit from some supplements, especially if they are not eating

dairy. How do

> you know if dairy is a problem, is there a test for that? My son

doesn't like

> milk, but loves ice cream, I have been giving him soy ice cream

which he

> will eat, but then I read that that can cause problems with the

digestive tract

> if too much soy is eaten. I guess my question is should I get

started with

> this DAN thing, or skip it, now I am confused.

>

>

>

> **************The year's hottest artists on the red carpet at the

Grammy

> Awards. Go to AOL Music.

> (http://music.aol.com/grammys?NCID=aolcmp00300000002565)

>

>

>

Link to comment
Share on other sites

In a journal article on nutrition from a Magazine called Health and

Wellness. If a child is not getting any form of calcium for their bones or

teeth it

is important that they receive some form of supplementation to make up for

these missing minerals.

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

Link to comment
Share on other sites

I have been researching this, it is very confusing to me, sorry if it

appears I have not done my home work. I just felt someone else could help me

too.

My son doesn't seem to have any obvious problems with milk, I just sometimes

know it goes along with the gluten free diet. These are not allergies they

are intolerance's some of the time so a test for allergies is not what I am

looking for. It seems like you are angry with me for not knowing these things,

people post duplicate questions all the time, I don't think anyone has all

the answers including you. A lot of the tests that the DAN Dr's do medical

MD doctors don't believe in or know anything about. My Father has a general

knowledge of medicine but he is retired and he is just giving his opinion. The

symptoms of celiac disease don't fit my son. Please from now on don't respond

to my questions if you cannot give respectful answers. You act like I have

done something wrong, just be happy you know more than me.

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

Link to comment
Share on other sites

I have been told by a professional nutritionist to make sure my son who is

30 lbs gets 1000mg daily of calcium/magnesium. I use Kirkman. What kind do

you use?

Re: [ ] Re: CAN YOU PLS GIVE ME SOME ADVICE

In a journal article on nutrition from a Magazine called Health and

Wellness. If a child is not getting any form of calcium for their bones or

teeth it

is important that they receive some form of supplementation to make up for

these missing minerals.

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music. <http://music.aol.com/grammys?NCID=aolcmp00300000002565>

aol.com/grammys?NCID=aolcmp00300000002565)

Link to comment
Share on other sites

I go back and forth on the DAN thing daily. My son , 5-1/2,

has age-appropriate speech, but some auditory processing issues and

mediocre handwriting. For him, I tried and tried to go the

mainstream medical route for answers. I was able to rule out some

things, but every one of my solutions came from the " alternative "

category:

--fish oil was a miracle for speech (integrated public preschool with

speech and OT was also tremendously important)

--homeopathy cleared up non-stop nasal congestion

--digestive enzymes cleared up loose stool

--eliminating dairy greatly improved behavior and probably stool (we

still use enzymes)

--NACD program is helping us a lot with the auditory issues, and also

getting us ahead on academics

What didn't help us? The two developmental pediatricians, the two

GI's, the allergist, the ENT, the regular pediatrician, and the

regular preschool. I may even be forgetting some. What didn't I

mention? A DAN doctor. I have been able to get VERY FAR on

my own, with no doctor at all. I have tried other supplements, some

good, some no effect. I have messed around with dosages. I have

tried diets. You can definitely do a lot of this without a doctor,

but you are flying blind. Even though he is doing great, I am

constantly wondering if I would learn something from good lab work.

Now my baby has low-average motor skills and a big communication

delay. For him, I decided to go with the guidance of a DAN doctor,

and I don't regret this despite the cost. I feel that at his young

age, I want to do everything I can not just to improve his skills but

to avoid a regression into bigger problems. The lab work was very

interesting and has guided our treatment plan. We have been able to

use prescription yeast fighters (Nystatin and Diflucan), and we have

just started mB12 shots (I'm optimistic -- he has been communicating

better this week).

The bottom line is going to a DAN is very very very expensive (most

of the time, but there are a few exceptions), but can save you time

and open up your options. BUT you can do a lot on your own, at least

to get started. That's what I did with , and as I said, it

has worked out pretty well for us. Here's my advice:

--Buy that 4-A's Bock book. It is fantastic and very up-to-date and

very parent friendly. You can get very far with that one book alone.

--Try to figure out food intolerances and allergies the mainstream

way. Depending on the food item, a trial period of 100% total

elimination works well. You can figure out dairy issues in just

three weeks. Gluten can take longer (minimum three months). This is

also useful because eliminating a problem food often makes some of

the other interventions unnecessary.

--Do your best to make some of the dietary changes any DAN will

recommend. You know the drill: more whole foods, no artificials,

organic when possible, etc.

--Try to tackle the yeast on your own with probiotics, limiting sugar

and juice, and possibly try some of the natural cures out there.

(They do work for people I know, but I haven't tried any of them

personally.)

--I can't remember what supplements you have already tried, but fish

oil, vitamin E, and carntine have been successful for many in this

group. (I would add CoQ10 if taking carnitine, as they work

synergistically and are good for tone issues. You can buy it in

chewable format.)

These are all things that you can try and observe results with your

own two eyes. No DAN needed. After that, a DAN can really guide

you. mB12 shots supposedly help a lot with communication, especially

for spectrum kids. They like DMG a lot, but it did nothing for us

speech-wise (it also helps with methylation, but I think mB12 is

better.)

I'm not sure if that is helpful or more confusing. I have been and

continue to be in your shoes, so I know how frustrating this decision

can be. Email me offline if you have any questions.

in NJ

>

> I have some questions regarding DAN Dr's. My son has issues with

gluten. I

> have posted before that he craves carbohydrates and when he eats

too much, he

> gets a red yeast infection that sometimes bleeds. He has not had

any pizza

> for three weeks, he doesn't care for the gluten free kind although

I do still

> offer it to him. My Father is a retired physician and from the

description

> that is given for Celiac's disease he just does not feel that

these symptoms

> fit my son. We have an appointment with a DAN Dr in June. He is

also an MD,

> he was in family medicine before. Most or all of these Dr's don't

take

> insurance and I don't even want to know how much they charge I am

scared. I

> worked for a Chiropractor for a few years and I felt the use of

some of the

> supplements were a waste of money. Here are the things I know, my

son has

> apraxia, PDD NOS (Autism spectrum) and symptoms from too much

gluten. He has great

> eye contact, social relationships, but is severely speech delayed

in the

> expressive area do to the apraxia. He is getting speech at our

home once a week

> from a speech therapist that specializes in Apraxia, he is in

early childhood

> education and is getting OT and speech there, he is going to start

OT next

> week once a week at a facility near our home. He also has an

Autism specialist

> come to the house once a week. I have been trying to do a lot of

reading

> regarding these special diets, etc. I do believe there is

something to this for

> I don' think my son would get this red irritation if he didn't

have a

> problem. I don't want to waste money and I don't want to upset my

son, he doesn't

> like Dr's much, he is four. I have concerns about the MMR shots,

etc that

> children get when they are five, I was told to do a titer. Here

is the

> question. Can a DAN do something that I 's mother cannot???

Blood tests are

> ordered and you do them at your Pediatricians office. I know

children can

> benefit from some supplements, especially if they are not eating

dairy. How do

> you know if dairy is a problem, is there a test for that? My son

doesn't like

> milk, but loves ice cream, I have been giving him soy ice cream

which he

> will eat, but then I read that that can cause problems with the

digestive tract

> if too much soy is eaten. I guess my question is should I get

started with

> this DAN thing, or skip it, now I am confused.

>

>

>

> **************The year's hottest artists on the red carpet at the

Grammy

> Awards. Go to AOL Music.

> (http://music.aol.com/grammys?NCID=aolcmp00300000002565)

>

>

>

Link to comment
Share on other sites

I think I misunderstood your post to mean they can only benefit from

supplements off milk and that confused me. Sorry about that.

>

> In a journal article on nutrition from a Magazine called Health

and

> Wellness. If a child is not getting any form of calcium for their

bones or teeth it

> is important that they receive some form of supplementation to make

up for

> these missing minerals.

>

>

>

> **************The year's hottest artists on the red carpet at the

Grammy

> Awards. Go to AOL Music.

> (http://music.aol.com/grammys?NCID=aolcmp00300000002565)

>

>

>

Link to comment
Share on other sites

Hi ,

When I first started looking into all of this " Biomed stuff " last

year, I too was extremely confused.

Two books really helped me understand all of the different options

and gave me some guidence. They are " Healing the Childhood

Epidemics, The 4 A Disorders: Autism, Alergies, Asthma & ADHD " by Dr.

Bock (A truly wonderful book) and the second book

is " Children with Starving Brains " by Dr. McCandless.

Both of these books are great at explaining what is going on with the

child medically and they really help you understand the testing and

such.

I actually began supplementing on my own long before I found my

current doctor who is not a DAN doctor but an Environmental doctor.

I am in Canada and could not find a DAN. I was able to really change

my son's diet on my own and work on my own to determine which foods

were disagreeing with him. When I finally got to see my doctor, my

son had been on basic supplements for months and we had already

healed his gut! Thus, we did what we could beforehand therefore

potentially saving $$$.

In addition, if you go to http://www.autism.com and type in the word

webcast into the search engine, you will be able to locate all of the

FREE DAN seminars which serve as an introduction into the world of

diets, biomed and pretty much everything you need to know to get

started in that world.

There are some wonderful webcasts on diet that really gave me a lot

of perspective when I was first starting the 'food journey'. The

webcasts were a lot more compelling than the books and they convinced

me to 'give it a go'. These seminars and such will really help you to

make decisions.

You are the only one who truly knows your son and though many people

could advise me on Mark.... I really had to see what he responded to

as an individual and work through his diet as a family. It was slow

going at times but now we are casien free, artificials free, msg free

and my son has really flourished in the process.

What works for him may or may not work for your boy. It is uniquely

individual.

YET.... for my son, while cleaning up his diet and working his gut

permeability issues has been absolutely important, it really has been

the daily therapy that has helped him the most.

Daily therapy and doing speech exercises as well as OT over

breakfast, in the car, and just before bedtime had been the mainstay

of our recovery thus far.

Good luck and give those videos a look see. The books are absolutely

worth a read as well. I actually brought them to my Environmental

Doctors office with the pages appropriately keyed off for reference!

I wanted to make sure that my doctor covered everything I needed and

for that, I absolutely had to have my Biomed References! :)

Dr. Bock actually lists different tests by tier group so that you get

an understanding of how it all works.

Personally, I do think that you need to work with a doctor but the

more you read means the less time he has to spend 'teaching' you and

the more you can concentrate your work on healing your child. You

can do a lot of preliminary work on your own and then use him for the

stuff that you absolutely must have a doctor for.

In addition, your dad may be able to help you with many of the items

as well.....

Hopes this gives you a little help with your dilema. I do know what

it feels like for until I did the reading and watched the ARI

webcasts, I was completely lost and confused.

I am much happier now that we have a direction and progress is being

made.

Good luck with this.

Janice

Mother of Mark, 13

Link to comment
Share on other sites

. Excellent post. You mirror me!

[ ] Re: CAN YOU PLS GIVE ME SOME ADVICE

I go back and forth on the DAN thing daily. My son , 5-1/2,

has age-appropriate speech, but some auditory processing issues and

mediocre handwriting. For him, I tried and tried to go the

mainstream medical route for answers. I was able to rule out some

things, but every one of my solutions came from the " alternative "

category:

--fish oil was a miracle for speech (integrated public preschool with

speech and OT was also tremendously important)

--homeopathy cleared up non-stop nasal congestion

--digestive enzymes cleared up loose stool

--eliminating dairy greatly improved behavior and probably stool (we

still use enzymes)

--NACD program is helping us a lot with the auditory issues, and also

getting us ahead on academics

What didn't help us? The two developmental pediatricians, the two

GI's, the allergist, the ENT, the regular pediatrician, and the

regular preschool. I may even be forgetting some. What didn't I

mention? A DAN doctor. I have been able to get VERY FAR on

my own, with no doctor at all. I have tried other supplements, some

good, some no effect. I have messed around with dosages. I have

tried diets. You can definitely do a lot of this without a doctor,

but you are flying blind. Even though he is doing great, I am

constantly wondering if I would learn something from good lab work.

Now my baby has low-average motor skills and a big communication

delay. For him, I decided to go with the guidance of a DAN doctor,

and I don't regret this despite the cost. I feel that at his young

age, I want to do everything I can not just to improve his skills but

to avoid a regression into bigger problems. The lab work was very

interesting and has guided our treatment plan. We have been able to

use prescription yeast fighters (Nystatin and Diflucan), and we have

just started mB12 shots (I'm optimistic -- he has been communicating

better this week).

The bottom line is going to a DAN is very very very expensive (most

of the time, but there are a few exceptions), but can save you time

and open up your options. BUT you can do a lot on your own, at least

to get started. That's what I did with , and as I said, it

has worked out pretty well for us. Here's my advice:

--Buy that 4-A's Bock book. It is fantastic and very up-to-date and

very parent friendly. You can get very far with that one book alone.

--Try to figure out food intolerances and allergies the mainstream

way. Depending on the food item, a trial period of 100% total

elimination works well. You can figure out dairy issues in just

three weeks. Gluten can take longer (minimum three months). This is

also useful because eliminating a problem food often makes some of

the other interventions unnecessary.

--Do your best to make some of the dietary changes any DAN will

recommend. You know the drill: more whole foods, no artificials,

organic when possible, etc.

--Try to tackle the yeast on your own with probiotics, limiting sugar

and juice, and possibly try some of the natural cures out there.

(They do work for people I know, but I haven't tried any of them

personally.)

--I can't remember what supplements you have already tried, but fish

oil, vitamin E, and carntine have been successful for many in this

group. (I would add CoQ10 if taking carnitine, as they work

synergistically and are good for tone issues. You can buy it in

chewable format.)

These are all things that you can try and observe results with your

own two eyes. No DAN needed. After that, a DAN can really guide

you. mB12 shots supposedly help a lot with communication, especially

for spectrum kids. They like DMG a lot, but it did nothing for us

speech-wise (it also helps with methylation, but I think mB12 is

better.)

I'm not sure if that is helpful or more confusing. I have been and

continue to be in your shoes, so I know how frustrating this decision

can be. Email me offline if you have any questions.

in NJ

>

> I have some questions regarding DAN Dr's. My son has issues with

gluten. I

> have posted before that he craves carbohydrates and when he eats

too much, he

> gets a red yeast infection that sometimes bleeds. He has not had

any pizza

> for three weeks, he doesn't care for the gluten free kind although

I do still

> offer it to him. My Father is a retired physician and from the

description

> that is given for Celiac's disease he just does not feel that

these symptoms

> fit my son. We have an appointment with a DAN Dr in June. He is

also an MD,

> he was in family medicine before. Most or all of these Dr's don't

take

> insurance and I don't even want to know how much they charge I am

scared. I

> worked for a Chiropractor for a few years and I felt the use of

some of the

> supplements were a waste of money. Here are the things I know, my

son has

> apraxia, PDD NOS (Autism spectrum) and symptoms from too much

gluten. He has great

> eye contact, social relationships, but is severely speech delayed

in the

> expressive area do to the apraxia. He is getting speech at our

home once a week

> from a speech therapist that specializes in Apraxia, he is in

early childhood

> education and is getting OT and speech there, he is going to start

OT next

> week once a week at a facility near our home. He also has an

Autism specialist

> come to the house once a week. I have been trying to do a lot of

reading

> regarding these special diets, etc. I do believe there is

something to this for

> I don' think my son would get this red irritation if he didn't

have a

> problem. I don't want to waste money and I don't want to upset my

son, he doesn't

> like Dr's much, he is four. I have concerns about the MMR shots,

etc that

> children get when they are five, I was told to do a titer. Here

is the

> question. Can a DAN do something that I 's mother cannot???

Blood tests are

> ordered and you do them at your Pediatricians office. I know

children can

> benefit from some supplements, especially if they are not eating

dairy. How do

> you know if dairy is a problem, is there a test for that? My son

doesn't like

> milk, but loves ice cream, I have been giving him soy ice cream

which he

> will eat, but then I read that that can cause problems with the

digestive tract

> if too much soy is eaten. I guess my question is should I get

started with

> this DAN thing, or skip it, now I am confused.

>

>

>

> **************The year's hottest artists on the red carpet at the

Grammy

> Awards. Go to AOL Music.

> (http://music. <http://music.aol.com/grammys?NCID=aolcmp00300000002565>

aol.com/grammys?NCID=aolcmp00300000002565)

>

>

>

Link to comment
Share on other sites

You can even talk to a nutritionist, www.Dorfman.com. She is excellent.

Re: [ ] Re: CAN YOU PLS GIVE ME SOME ADVICE

I don't yet, I don't know which one to go with, I have one, a liquid I

ordered from Kirkman but I thought I would wait and ask the DAN which he

thought

was good.

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music. <http://music.aol.com/grammys?NCID=aolcmp00300000002565>

aol.com/grammys?NCID=aolcmp00300000002565)

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...