New and Confused

[Guest guest]

Hi Jodi,

I can understand being confused, especially when trying to find answers on the

internet. I have been a special education teacher for 18 years now and I just

became aware of this disability a few years ago. My son was diagnosed this past

summer at age 11,but when I looked back on his younger years things started to

make sense. I'm not sure about anyone else, so the process I will talk about is

how my son was diagnosed. He was attending therapy sessions when I was first

asked to consider the diagnosis. I looked in to the information on the Internet

like you did and decided that was not my son. After three more people suggested

that my son might have Asperger's Syndrome, I took him for an Independent

Educational Evaluation with an examiner who had extensive experience in working

with students with AS. She completed a long interview with me, observed my son,

and gave him many educational tests. She compared all of this information with

the DSM-IV manual and found he had not only

several criteria for the diagnosis but also a LD in written expression and

sensory integration issues. She referred us to a clinic at the Children's

Hospital where the staff is knowledgable in ASD and could give him the official

diagnosis. This was done and completed at the end of July of this year.

There is no " test " for AS that I know of, but interviews with parents and

teachers to find out characteristics and symptoms.

I have found the information at O.A.S.I.S. to be informative.

http://www.udel.edu/bkirby/asperger/

Please remember as you read the information on the Internet or in books or

talk with other parents that all children do not exhibit all of the same

characteristics. Sometimes I will talk with other parents and our children

sound like clones and sometimes they sound like total opposites. My son has

issues with foods and yours might not have those issues or the same issues. My

son is very literal and yours might or might not be - just depends.

Good luck!

Janice

Jodi <jodilynne74@...> wrote:

First I would like to say hello to you all. I am the mother of 2

wonderful Children Connor 8 and Kylie 5. Recently we were told

through the school theropist that she thought that Connor may have

aspergers syndrome. For me this began to make sense of a lot of

things that are day to day issues with him. However as I read the

information on the net I am getting more and more confused. I can read

10 diffrent articles and on 5 of them I can say yes,yes, yes on the

other Im like no no no. He has been refurred to a nuerologist for a

diagnoises, however we have not been to one yet. I just want to know

what Im talking about before we go in. I guess my question is how do

they test for it and what is the best site to go to if you want the

most accurate information? I also have a mmeting sceduled next week

to determine if Connor should move into 4th grade when he returns from

vaccation. Academically he can do it is his social emotional issues

that make me nervouse about the move. Thanks if you have read this

far.

[Guest guest]

Dear Janice, & Jodi,

That is exactly what is confusing. You can have any number of children DX

with AS and each one is very different! And if they both have the same

concerns. What works for my son might not work for your son. My son & your son

can have AS but nothing is the same. How confused is that! So, what I did is

just learn all about my son and his needs. I look on the Internet & this

support group only to get information that helps me with my sons needs. With

this support group, I look for things that relate to my sons concerns and use

that information. the same with the Internet. Some sites don't relate at all.

We have no use for it, then I move on till I find what relates. I get all that

information and make my list of concerns, then strategies, and try to make that

work. I bring all this to my sons school, team meetings, bring up my concerns

and hear their strategies too. I then take all that information and bring it to

his therapist. My notes, and the schools too. then we

all work together. But, this is what I found that works best for us. It might

sound silly or a waist of time for you. Because each child's needs are so

different. That is the confusing part. each child is unique in a very special

way and each parent has to find that very special way so they can help their

child. It does take time. And when you read Posts from parents with older

children, that are now in College! You can see how well their children are

doing and all that well spent time us parents took to find strategies did work

and our children do, do well. I'm now less confused now that I just focus's on

my 8 year old AS son. I'm sure next year will be another challenge but I will

wait till then to solve that, and work with what I have now. Happy New Year to

you all.

Janice <nascar_momma@...> wrote:

Hi Jodi,

I can understand being confused, especially when trying to find answers on the

internet. I have been a special education teacher for 18 years now and I just

became aware of this disability a few years ago. My son was diagnosed this past

summer at age 11,but when I looked back on his younger years things started to

make sense. I'm not sure about anyone else, so the process I will talk about is

how my son was diagnosed. He was attending therapy sessions when I was first

asked to consider the diagnosis. I looked in to the information on the Internet

like you did and decided that was not my son. After three more people suggested

that my son might have Asperger's Syndrome, I took him for an Independent

Educational Evaluation with an examiner who had extensive experience in working

with students with AS. She completed a long interview with me, observed my son,

and gave him many educational tests. She compared all of this information with

the DSM-IV manual and found he had not only

several criteria for the diagnosis but also a LD in written expression and

sensory integration issues. She referred us to a clinic at the Children's

Hospital where the staff is knowledgable in ASD and could give him the official

diagnosis. This was done and completed at the end of July of this year.

There is no " test " for AS that I know of, but interviews with parents and

teachers to find out characteristics and symptoms.

I have found the information at O.A.S.I.S. to be informative.

http://www.udel.edu/bkirby/asperger/

Please remember as you read the information on the Internet or in books or

talk with other parents that all children do not exhibit all of the same

characteristics. Sometimes I will talk with other parents and our children

sound like clones and sometimes they sound like total opposites. My son has

issues with foods and yours might not have those issues or the same issues. My

son is very literal and yours might or might not be - just depends.

Good luck!

Janice

Jodi <jodilynne74@...> wrote:

First I would like to say hello to you all. I am the mother of 2

wonderful Children Connor 8 and Kylie 5. Recently we were told

through the school theropist that she thought that Connor may have

aspergers syndrome. For me this began to make sense of a lot of

things that are day to day issues with him. However as I read the

information on the net I am getting more and more confused. I can read

10 diffrent articles and on 5 of them I can say yes,yes, yes on the

other Im like no no no. He has been refurred to a nuerologist for a

diagnoises, however we have not been to one yet. I just want to know

what Im talking about before we go in. I guess my question is how do

they test for it and what is the best site to go to if you want the

most accurate information? I also have a mmeting sceduled next week

to determine if Connor should move into 4th grade when he returns from

vaccation. Academically he can do it is his social emotional issues

that make me nervouse about the move. Thanks if you have read this

far.

[Guest guest]

Rose - you should do this 24/7 - at work and at home. It is very confusing

because I have 9 students in my classroom. One is diagnosed with Autism, four

with Mental Retardation, and four with specific learning disabilities. Each

child is different, but they do share some commonalities, too. It can be hard

to get just the right information. Your way sounds the best. Find the

characteristics/symptoms for your child and work on those.

Good luck!

Janice

Rose <beachbodytan2002@...> wrote:

Dear Janice, & Jodi,

That is exactly what is confusing. You can have any number of children DX

with AS and each one is very different! And if they both have the same

concerns. What works for my son might not work for your son. My son & your son

can have AS but nothing is the same. How confused is that! So, what I did is

just learn all about my son and his needs. I look on the Internet & this

support group only to get information that helps me with my sons needs. With

this support group, I look for things that relate to my sons concerns and use

that information. the same with the Internet. Some sites don't relate at all.

We have no use for it, then I move on till I find what relates. I get all that

information and make my list of concerns, then strategies, and try to make that

work. I bring all this to my sons school, team meetings, bring up my concerns

and hear their strategies too. I then take all that information and bring it to

his therapist. My notes, and the schools too. then we

all work together. But, this is what I found that works best for us. It might

sound silly or a waist of time for you. Because each child's needs are so

different. That is the confusing part. each child is unique in a very special

way and each parent has to find that very special way so they can help their

child. It does take time. And when you read Posts from parents with older

children, that are now in College! You can see how well their children are

doing and all that well spent time us parents took to find strategies did work

and our children do, do well. I'm now less confused now that I just focus's on

my 8 year old AS son. I'm sure next year will be another challenge but I will

wait till then to solve that, and work with what I have now. Happy New Year to

you all.

Janice <nascar_momma@...> wrote:

Hi Jodi,

I can understand being confused, especially when trying to find answers on the

internet. I have been a special education teacher for 18 years now and I just

became aware of this disability a few years ago. My son was diagnosed this past

summer at age 11,but when I looked back on his younger years things started to

make sense. I'm not sure about anyone else, so the process I will talk about is

how my son was diagnosed. He was attending therapy sessions when I was first

asked to consider the diagnosis. I looked in to the information on the Internet

like you did and decided that was not my son. After three more people suggested

that my son might have Asperger's Syndrome, I took him for an Independent

Educational Evaluation with an examiner who had extensive experience in working

with students with AS. She completed a long interview with me, observed my son,

and gave him many educational tests. She compared all of this information with

the DSM-IV manual and found he had not only

several criteria for the diagnosis but also a LD in written expression and

sensory integration issues. She referred us to a clinic at the Children's

Hospital where the staff is knowledgable in ASD and could give him the official

diagnosis. This was done and completed at the end of July of this year.

There is no " test " for AS that I know of, but interviews with parents and

teachers to find out characteristics and symptoms.

I have found the information at O.A.S.I.S. to be informative.

http://www.udel.edu/bkirby/asperger/

Please remember as you read the information on the Internet or in books or

talk with other parents that all children do not exhibit all of the same

characteristics. Sometimes I will talk with other parents and our children

sound like clones and sometimes they sound like total opposites. My son has

issues with foods and yours might not have those issues or the same issues. My

son is very literal and yours might or might not be - just depends.

Good luck!

Janice

Jodi <jodilynne74@...> wrote:

First I would like to say hello to you all. I am the mother of 2

wonderful Children Connor 8 and Kylie 5. Recently we were told

through the school theropist that she thought that Connor may have

aspergers syndrome. For me this began to make sense of a lot of

things that are day to day issues with him. However as I read the

information on the net I am getting more and more confused. I can read

10 diffrent articles and on 5 of them I can say yes,yes, yes on the

other Im like no no no. He has been refurred to a nuerologist for a

diagnoises, however we have not been to one yet. I just want to know

what Im talking about before we go in. I guess my question is how do

they test for it and what is the best site to go to if you want the

most accurate information? I also have a mmeting sceduled next week

to determine if Connor should move into 4th grade when he returns from

vaccation. Academically he can do it is his social emotional issues

that make me nervouse about the move. Thanks if you have read this

far.

[Guest guest]

Dear Janice,

You are a very special person to have a job like you do and care for all 9

children! I love my two children but I don't know if I can do what you do. God

Bless You! - Rose

Janice <nascar_momma@...> wrote:

Rose - you should do this 24/7 - at work and at home. It is very confusing

because I have 9 students in my classroom. One is diagnosed with Autism, four

with Mental Retardation, and four with specific learning disabilities. Each

child is different, but they do share some commonalities, too. It can be hard

to get just the right information. Your way sounds the best. Find the

characteristics/symptoms for your child and work on those.

Good luck!

Janice

Rose <beachbodytan2002@...> wrote:

Dear Janice, & Jodi,

That is exactly what is confusing. You can have any number of children DX

with AS and each one is very different! And if they both have the same

concerns. What works for my son might not work for your son. My son & your son

can have AS but nothing is the same. How confused is that! So, what I did is

just learn all about my son and his needs. I look on the Internet & this

support group only to get information that helps me with my sons needs. With

this support group, I look for things that relate to my sons concerns and use

that information. the same with the Internet. Some sites don't relate at all.

We have no use for it, then I move on till I find what relates. I get all that

information and make my list of concerns, then strategies, and try to make that

work. I bring all this to my sons school, team meetings, bring up my concerns

and hear their strategies too. I then take all that information and bring it to

his therapist. My notes, and the schools too. then we

all work together. But, this is what I found that works best for us. It might

sound silly or a waist of time for you. Because each child's needs are so

different. That is the confusing part. each child is unique in a very special

way and each parent has to find that very special way so they can help their

child. It does take time. And when you read Posts from parents with older

children, that are now in College! You can see how well their children are

doing and all that well spent time us parents took to find strategies did work

and our children do, do well. I'm now less confused now that I just focus's on

my 8 year old AS son. I'm sure next year will be another challenge but I will

wait till then to solve that, and work with what I have now. Happy New Year to

you all.

Janice <nascar_momma@...> wrote:

Hi Jodi,

I can understand being confused, especially when trying to find answers on the

internet. I have been a special education teacher for 18 years now and I just

became aware of this disability a few years ago. My son was diagnosed this past

summer at age 11,but when I looked back on his younger years things started to

make sense. I'm not sure about anyone else, so the process I will talk about is

how my son was diagnosed. He was attending therapy sessions when I was first

asked to consider the diagnosis. I looked in to the information on the Internet

like you did and decided that was not my son. After three more people suggested

that my son might have Asperger's Syndrome, I took him for an Independent

Educational Evaluation with an examiner who had extensive experience in working

with students with AS. She completed a long interview with me, observed my son,

and gave him many educational tests. She compared all of this information with

the DSM-IV manual and found he had not only

several criteria for the diagnosis but also a LD in written expression and

sensory integration issues. She referred us to a clinic at the Children's

Hospital where the staff is knowledgable in ASD and could give him the official

diagnosis. This was done and completed at the end of July of this year.

There is no " test " for AS that I know of, but interviews with parents and

teachers to find out characteristics and symptoms.

I have found the information at O.A.S.I.S. to be informative.

http://www.udel.edu/bkirby/asperger/

Please remember as you read the information on the Internet or in books or

talk with other parents that all children do not exhibit all of the same

characteristics. Sometimes I will talk with other parents and our children

sound like clones and sometimes they sound like total opposites. My son has

issues with foods and yours might not have those issues or the same issues. My

son is very literal and yours might or might not be - just depends.

Good luck!

Janice

Jodi <jodilynne74@...> wrote:

First I would like to say hello to you all. I am the mother of 2

wonderful Children Connor 8 and Kylie 5. Recently we were told

through the school theropist that she thought that Connor may have

aspergers syndrome. For me this began to make sense of a lot of

things that are day to day issues with him. However as I read the

information on the net I am getting more and more confused. I can read

10 diffrent articles and on 5 of them I can say yes,yes, yes on the

other Im like no no no. He has been refurred to a nuerologist for a

diagnoises, however we have not been to one yet. I just want to know

what Im talking about before we go in. I guess my question is how do

they test for it and what is the best site to go to if you want the

most accurate information? I also have a mmeting sceduled next week

to determine if Connor should move into 4th grade when he returns from

vaccation. Academically he can do it is his social emotional issues

that make me nervouse about the move. Thanks if you have read this

far.

[Guest guest]

Hi,

Since your son is willing to do the diet and it seems to be helping,

if I were you I'd stick with it for awhile and see where it gets you.

Once you feel like his progress from the diet has leveled off, maybe

you could experiment with infractions with the enzymes to see if he

regresses at all? I would think that if you switch to enzymes now, or

switch soon then you'll never know if he is doing as well on the

enzymes as he would have on the diet. Also, I would add the enzymes

into his diet when he is still GF/CF. A lot of the kids seem to do

better on the diet when they have enzymes even if they aren't eating

gluten or casein.

It seems that lots of kids do fine, or even better, on enzymes with

some or no diet than they did with diet and no enzymes, but different

kids react differently. This question confused me a lot too. My son

is one of the kids who needs to be 100% on the diet even with enzymes,

but the enzymes still help tremendously. How great that he is

communicating more!

-Sierra

>

> Hi everyone, I joined the group after stumbling upon it during one of

> my endless Google searches.

>

> Here it is....My son (Dylan) has been classified as autistic by the

> school district and he is currently attending a special pre-school

> with other autistic kids and getting speech, OT and various other

> therapies as well as socialization skills. I have our first neurology

> appt. on 12/4 for the " official " diagnosis. He has NO speech and is

> hyperactive, stims and can become obsessive cumpulsive. I would have

> to say that his lack of speech and non-compliance are our biggest

> issues. He is an extremely affectionate boy who imitates, sleeps

> pretty well, and can be easily broken of routines.He has never had

> bowel problems and he was fully potty trained at around 3 1/2.

> Because of this he went undiagnosed for a long time (autism truly is

> full of contradictions!)

>

> I have started him on the gfcf diet about 1 week ago, but then I

> found the Houston Enzymes (another google search!). This seems

> exciting to me that perhaps I could use the enzymes instead?!?!?! My

> son was a milk ADDICT!! And he could have happily lived on bread and

> butter alone. The funny thing is that since starting the diet he

> seems to be trying to communicate a bit more and his belly doesn't

> have that " swollen " look. He isn't resistant to the diet since his

> fav. hot dogs are allowed and he likes alot of the stuff that is

> allowed. However, I feel that if I could add the enzymes and allow

> for diet infractions it would releive ME of some of the stress.

>

> I apologize for the length of this question but I am sooo confused!

> No-Fenol, Peptizyde (which I've already ordered), supplements....can

> someone explain some of this to me in PLAIN ENGLISH?!?!

>

> It will be some time before I can see a DAN! dr. and I don't expect

> alot of help from the insurane-provided neurologist, so I only have

> you parents to learn from.....please help!

>

[Guest guest]

Our little 4.5 yr old grandson went on the Casein free diet first.

After only 3 weeks on this he became verbal and the fog lifted from

his little eyes. He was aware of his surroundings and actually said

his first sentence. " I know Sam " (a train). He has

started saying words but not to someone. So his communication is

still a problem. That was just by eleminating MILK. Next we got the

Houston enzymes and started giving those instead of the Gluten diet.

He has been on those for 3 weeks. We also started giving Omega 3.

Both of these have brought his conduct in his school from a D to an

A+. We see a Dan on Jan 3rd and he may put him on the Gluten free

diet, but for now he is doing really well. He takes Peptzydes and

the Zyme.

> >

> > Hi everyone, I joined the group after stumbling upon it during

one of

> > my endless Google searches.

> >

> > Here it is....My son (Dylan) has been classified as autistic by

the

> > school district and he is currently attending a special pre-

school

> > with other autistic kids and getting speech, OT and various other

> > therapies as well as socialization skills. I have our first

neurology

> > appt. on 12/4 for the " official " diagnosis. He has NO speech and

is

> > hyperactive, stims and can become obsessive cumpulsive. I would

have

> > to say that his lack of speech and non-compliance are our biggest

> > issues. He is an extremely affectionate boy who imitates, sleeps

> > pretty well, and can be easily broken of routines.He has never

had

> > bowel problems and he was fully potty trained at around 3 1/2.

> > Because of this he went undiagnosed for a long time (autism truly

is

> > full of contradictions!)

> >

> > I have started him on the gfcf diet about 1 week ago, but then I

> > found the Houston Enzymes (another google search!). This seems

> > exciting to me that perhaps I could use the enzymes instead?!?!?!

My

> > son was a milk ADDICT!! And he could have happily lived on bread

and

> > butter alone. The funny thing is that since starting the diet he

> > seems to be trying to communicate a bit more and his belly

doesn't

> > have that " swollen " look. He isn't resistant to the diet since

his

> > fav. hot dogs are allowed and he likes alot of the stuff that is

> > allowed. However, I feel that if I could add the enzymes and

allow

> > for diet infractions it would releive ME of some of the stress.

> >

> > I apologize for the length of this question but I am sooo

confused!

> > No-Fenol, Peptizyde (which I've already ordered),

supplements....can

> > someone explain some of this to me in PLAIN ENGLISH?!?!

> >

> > It will be some time before I can see a DAN! dr. and I don't

expect

> > alot of help from the insurane-provided neurologist, so I only

have

> > you parents to learn from.....please help!

> >

>

[Guest guest]

>>He has NO speech and is

> hyperactive, stims and can become obsessive cumpulsive.

What my son needed for speech is written here

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

Hyper can be many things, especially intolerances to milk, corn, and

phenols, and yeast overgrowth

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

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

Stims are from many different causes. What are your child's stims?

OCD, at my house, was related to viruses.

> I have started him on the gfcf diet about 1 week ago, but then I

> found the Houston Enzymes (another google search!). This seems

> exciting to me that perhaps I could use the enzymes instead?!?!?!

My son left gfcf with HNI enzymes, but I did have to remove certain

other foods until the end of ALA chelation plus several supplements.

> I apologize for the length of this question but I am sooo confused!

> No-Fenol, Peptizyde (which I've already ordered), supplements....can

> someone explain some of this to me in PLAIN ENGLISH?!?!

Peptizyde: gluten/casein/soy, helps eliminate viruses

AFP Peptizyde: same as above, for kids who don't tolerate

papain/bromelain

No-Fenol: fruits and other high phenol foods, helps with artificials

for some kids, also helps eliminate yeast by digesting the yeast cell wall

Zyme Prime: proteins, carbs, starches, fats, general digestion of

most foods [HN has papain/bromelain, SCD version with cellulose does not]

Dana

[Guest guest]

His stimms are chewing on his sleeves, scrunching up his face, and hand

movements. His obssesive cumpulsive behaviors mostly have to do with

manipulating his enviroment (i.e. moving things from place to place,

" organizing " , putting things in boxes).

Note: It's day 4 of DMG and I noticed in the last 2 days NO SLEEVE CHEWING!!!!

Also, the rash I mentioned is gone. We did have a bout of extremely dry and cold

weather and Dylan's skin chaps easily (he has dry skin to begin with)

danasview <danasview@...> wrote:

>>He has NO speech and is

> hyperactive, stims and can become obsessive cumpulsive.

What my son needed for speech is written here

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

Hyper can be many things, especially intolerances to milk, corn, and

phenols, and yeast overgrowth

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

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

Stims are from many different causes. What are your child's stims?

OCD, at my house, was related to viruses.

> I have started him on the gfcf diet about 1 week ago, but then I

> found the Houston Enzymes (another google search!). This seems

> exciting to me that perhaps I could use the enzymes instead?!?!?!

My son left gfcf with HNI enzymes, but I did have to remove certain

other foods until the end of ALA chelation plus several supplements.

> I apologize for the length of this question but I am sooo confused!

> No-Fenol, Peptizyde (which I've already ordered), supplements....can

> someone explain some of this to me in PLAIN ENGLISH?!?!

Peptizyde: gluten/casein/soy, helps eliminate viruses

AFP Peptizyde: same as above, for kids who don't tolerate

papain/bromelain

No-Fenol: fruits and other high phenol foods, helps with artificials

for some kids, also helps eliminate yeast by digesting the yeast cell wall

Zyme Prime: proteins, carbs, starches, fats, general digestion of

most foods [HN has papain/bromelain, SCD version with cellulose does not]

Dana

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

>

> His stimms are chewing on his sleeves,

For some kids, zinc deficiency. At my house, food intolerance or

yeast overgrowth.

>> scrunching up his face,

Yeast overgrowth.

>> and hand movements.

Depends on the hand movements.

>>His obssesive cumpulsive behaviors

Viral

> Note: It's day 4 of DMG and I noticed in the last 2 days NO SLEEVE

CHEWING!!!!

I have not read about DMG eliminating that issue, but congrats on

finding the cause!

>> Also, the rash I mentioned is gone. We did have a bout of extremely

dry and cold weather and Dylan's skin chaps easily (he has dry skin to

begin with)

For dry skin, folic acid.

Dana

[Guest guest]

Which antiviral would you suggest for obsessive compulsive behavior?

Thanks and Regards,

Sunny

danasview <danasview@...> wrote:

>

> His stimms are chewing on his sleeves,

For some kids, zinc deficiency. At my house, food intolerance or

yeast overgrowth.

>> scrunching up his face,

Yeast overgrowth.

>> and hand movements.

Depends on the hand movements.

>>His obssesive cumpulsive behaviors

Viral

> Note: It's day 4 of DMG and I noticed in the last 2 days NO SLEEVE

CHEWING!!!!

I have not read about DMG eliminating that issue, but congrats on

finding the cause!

>> Also, the rash I mentioned is gone. We did have a bout of extremely

dry and cold weather and Dylan's skin chaps easily (he has dry skin to

begin with)

For dry skin, folic acid.

Dana

[Guest guest]

>

> Which antiviral would you suggest for obsessive compulsive behavior?

I would start with OLE. Vitamin C and lysine are good [give lysine 2

hours apart from OLE]. I also have used Virastop.

Dana

[Guest guest]

Dana,

When you talk about lyseine ... are you talk about l-lyseine the amino

acid? I know I use lyseine in a tube for cold sores on lips and the

stuff is great ... but I haven't seen just plain lyseine as a

supplement???

My son gets cold sores all the time ... it would be great to be able to

administer a preventitive supplement that could break their bonds and

get rid of them.

Thanks, Melinda

> >

> > Which antiviral would you suggest for obsessive compulsive behavior?

>

>

> I would start with OLE. Vitamin C and lysine are good [give lysine 2

> hours apart from OLE]. I also have used Virastop.

>

> Dana

>

[Guest guest]

> Dana,

> When you talk about lyseine ... are you talk about l-lyseine the amino

> acid?

Yes. Lysine the amino acid.

>>I know I use lyseine in a tube for cold sores on lips and the

> stuff is great ... but I haven't seen just plain lyseine as a

> supplement???

Cold sores are related to herpes virus. Lysine works great. I buy it

as capsules at my local health food store.

Dana

[Guest guest]

Thanks,

I will look for it.

Melinda

> > Dana,

> > When you talk about lyseine ... are you talk about l-lyseine the

amino

> > acid?

>

>

> Yes. Lysine the amino acid.

>

>

> >>I know I use lyseine in a tube for cold sores on lips and the

> > stuff is great ... but I haven't seen just plain lyseine as a

> > supplement???

>

>

> Cold sores are related to herpes virus. Lysine works great. I buy

it

> as capsules at my local health food store.

>

> Dana

>

[Guest guest]

Shanon,

Welcome to the list. Consider doing a DDI (Doctor's Data, Inc.) hair elements

test and applying the counting rules. You can order the hair test without a doc

through DLS (Direct Lab Services) and they'll give you a discount if you mention

this group.

S S

[Guest guest]

Hi I'm Krista and all these posts are really confusing me. Let me start by

saying that my son has not been diagnosed with apraxia but I suspect he

eventually will be. Here are some of my questions

1) Is it common for children with apraxia to be " wrongly " diagnosed young with a

spectrum disorder like PDD-NOS?

2) Is there an age that is too young for diagnosis?

3) What services are available for kids that have been diagnosed versus not

diagnosed?

My son is almost 20 months and I been given a lot of mixed advice and mixed

opinions. He is currently receiving private ST and OT that our insurance is

paying (so far) once a week. I am paying out of my pocket for 2 additional ST

sessions a week and 1 group ST/OT every other week. ECI is supposed to come

approximately 1x per week but so far they have only come 1x.

His main issues in my opinion are his speech (which he has a few approximations

but very few and no " real " words), jumping when excited (the arms flap at the

same time which is mostly why ppl think he is on the spectrum), and clumsiness.

I've been told that he has low tone in his trunk but he walked at 11 months and

is physically very in line with his age (if not ahead). There has been some

concern with his size because he is abnormally large at 37 inches and 40 lbs and

yes he will be 20 months on Friday. (No I'm not joking) He has so much to say

but I just can't make sense of most of it. Today he told me " III Da " which

meant " ice cream " . But again, most of the time I can't even make sense of what

he says. He certainly has some sensory issues as he is sensory seeking

especially with his jumping. I cannot possibly go into detail about everything

that we are going through but we are just trying to do the best by our son

because he is so smart and loving and I know his voice is in there.

Thanks for reading and any information is greatly appreciated as we are just

starting all of this process.

Krista

[Guest guest]

I don't have a lot of time to write tonight but did want to say WELCOME! I

started my journey with my son at age 18 mos and remember asking myself a lot of

the same questions that you are asking now. I am SO THRILLED for you that you

have your son in therapy already. It is so good for him to be getting a head

start this early. Keep plugging away, there will be a day when something

happens and all of a sudden you will fulfill your mommy's longing to hear his

voice. In my son's case this summer (when he was around 29 months) he made a

huge leap in comunication. I remember having self doubts and wondering if

he would ever say anything that anyone would ever understand. Now he is able

to say more and more each day. Be encouraged, your son is trying to

communicate and that is great and will help him so much as he develops skills.

My son also has low muscle tone but I just had him get a PT evaluation the other

day and she said that he doesn't need any PT but possibly some OT for the fine

motor skills. The fact that your son is reaching a lot of his milestones

(like walking) is very encouraging.

My best advice to you would be to just keep looking at the puzzle pieces and

trying to help him as best you can. It seems from what I read that every

one of us has had a different journey and gotten to higher levels by different

things. For example, my son's low muscle tone really affected his facial

muscles and I found that his greatest progress was when he began getting oral

motor therapy. I've heard others make the greatest strides from things like

PROMPT or by implementing a new suplement. Keep plugging away. I am glad

personally to have done a sleep study for my son as well as genetics testing.

I believe those two components are things that will help me help my son move

forward in figuring this out.

In answer to some of your questions: (1)My son was never diagnosed on the

spectrum although it seems to me that this does happen to a lot of parents (2)My

son's neurologist officially gave him the diagnosis at around 2.5 years and (3)I

think an official diagnosis from a dr (vs. the SLP) is the best help to you in

continuing to get your insurance to pay for his services.

Good luck!

Sue

[ ] New and Confused

Hi I'm Krista and all these posts are really confusing me. Let me start by

saying that my son has not been diagnosed with apraxia but I suspect he

eventually will be. Here are some of my questions

1) Is it common for children with apraxia to be " wrongly " diagnosed young with a

spectrum disorder like PDD-NOS?

2) Is there an age that is too young for diagnosis?

3) What services are available for kids that have been diagnosed versus not

diagnosed?

My son is almost 20 months and I been given a lot of mixed advice and mixed

opinions. He is currently receiving private ST and OT that our insurance is

paying (so far) once a week. I am paying out of my pocket for 2 additional ST

sessions a week and 1 group ST/OT every other week. ECI is supposed to come

approximately 1x per week but so far they have only come 1x.

His main issues in my opinion are his speech (which he has a few approximations

but very few and no " real " words), jumping when excited (the arms flap at the

same time which is mostly why ppl think he is on the spectrum), and clumsiness.

I've been told that he has low tone in his trunk but he walked at 11 months and

is physically very in line with his age (if not ahead). There has been some

concern with his size because he is abnormally large at 37 inches and 40 lbs and

yes he will be 20 months on Friday. (No I'm not joking) He has so much to say

but I just can't make sense of most of it. Today he told me " III Da " which meant

" ice cream " . But again, most of the time I can't even make sense of what he

says. He certainly has some sensory issues as he is sensory seeking especially

with his jumping. I cannot possibly go into detail about everything that we are

going through but we are just trying to do the best by our son because he is so

smart and loving and I know his voice is in there.

Thanks for reading and any information is greatly appreciated as we are just

starting all of this process.

Krista

[Guest guest]

Hi Krista!

To answer your questions -20 months is probably too young to know for 100

percent sure if your child has verbal apraxia -however it's not too young to

know if your child has oral apraxia. Also if your child has a delay in speech

with co existing symptoms such as motor deficits in the body as you point out

-or low tone or sensory issues -that is a warning sign of apraxia. There are a

number including...is your child's receptive ability higher than his expressive?

Is it really getting that crazy that because a child jumps up and down when

excited that's now viewed as a sign of autism? And to answer your question

-yes. Yes. Yes. I speak to parents almost every single day who have children

with no traditional signs at all -other than " not talking and sensory issues "

for the most part where the diagnosis is PDD or autism...and yesterday one

parent told me that a school professional suggested asperger syndrome

because...her son had speech and sensory issues. Yes there are children with

autism or PDD without apraxia, yes there are children with both autism and

apraxia, and yes there are children with apraxia without autism. Is it asking

too much for professionals that we pay to evaluate our children to know which is

which??? Appropriate diagnosis is so important for appropriate therapy and

placement.

Now your child is still due to his age could still be " just " a late talker. 75

percent of late talkers are just that -children with developmental delays in

speech. The good news is that you are the type of parent that isn't sitting

around ignoring any warning signs -just in case...and because of that your son

is fortunate to be in excellent hands. You may feel like " But I don't even know

what I'm doing " or as you put in your subject " I'm new and confused " Trust me

we've all been there at one point. And just like those mothers that can lift a

car that is on their child- you have the strength in you that you don't even

know to help your child today and going ahead no matter what. And there are

many of us here to help. Yes it has gotten much more complicated in the world

of " late talkers " But the good news is that as you'll read in the following

archive...and as Tammy Ingram and many other " old timers " pointed out...most of

us -the majority of us...didn't have to do much other than therapy and fish oils

to find great success.

Below is an archive- don't hesitate to ask as many questions as you have going

ahead!

The overwhelming majority (if you check the archives) have success

with the basic approach to apraxia.

On the other hand- most of us are dealing with more than verbal

apraxia. We just don't know that when our child is 2 -and we learn

through professionals and observations as they continue to grow and

more and more is expected of them. This is also why it's important

to take your child for a neurodevelopmental medical exam when your

child is suspected of apraxia to confirm or rule out other diagnosis

such as sensory integration dysfunction etc. The earlier you know -

the sooner to start appropriate therapies to get them up to speed by

kindergarten.

Don't let it overwhelm you -perhaps we aren't meant to know more

than what we have to know at each stage. We'll be here to help along

the way. It's OK to have any type of emotion when we find out our

child has more than a simple delay -or " more " than " just " verbal

apraxia. And it's OK to be completely overwhelmed and saddened to

find out your child has apraxia. And as I was one of those parents

it's never " just " apraxia when you find out!!!

It's OK to be upset " just " because your child is a " late talker " too!

Please know that I too believed my son Tanner to just have apraxia,.but down the

road found out he had a few other things we needed to help him

address. The incredible news is that the majority of our children if

you check history are up to speed to be mainstreamed by kindergarten-

and of course many have learned with communication impaired children

that it's best to start kindergarten at 6 vs. 5 to give them that one

extra year of therapy and developmental time.

If you have questions after reading the following please share them.

This group has always been a wealth of information for all of us, no

matter how long we've been here.

Below is a new member archived message to hopefully answer more of

your questions for now (did you read The Late Talker yet?) For updated

information on fish oils and vitamin E and more - please visit the

links section here

/links

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

http://www.cherab.org/information/speechlanguage/oralapraxia.html

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

http://contemporarypediatrics.modernmedicine.com/radio_peds4

Actual article (where you can read it for free)

http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

There are also many activities parents can do at home with their

child to

promote the development of speech. These are detailed in the Guide

for Parents

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1363\

\

15.

This guide was written by

[Guest guest]

Hi Krista My 28 month old son is being tested for Apraxia next week. He does

have an autism dx since he was 22 months old. At 25 months old he had an MRI and

it showed that he had a brain injury from birth called Periventricular

Luekomalcia(PVL). Basically some of the white matter in his brain was thinned

out by a lack of oxygen. It affects his motor planning. (ex. speech and

imitation) and has some sensory problems. Now with this new info his " autistic

like " behaviors can be attributed to the PVL BUT we are keeping the dx Autism

caused by PVL because with an Autism dx he gets SO much more therapy through

Early Intervention. More than he would with just the brain injury or Apraxia(sad

but true) I hated for him to get dx'd BUT his therapies increased drastically

with it. He now is approved for 5x's/wk speech, 5x's/wk Special Ed(cognitively

he is advanced but his lack of speech paired with the dx qualified him for

it), 3x's/wk OT, and something called

" family training " and family support both 3x's/wk. So he now get's 19 hrs a

week and he just got approved for a speech group too. So my feeling is

althouugh it is heartbreaking to have your child labeled in my son's case the

labels are well worth it b/c he gets the help he needs. I am sure he will get

the Apraxia dx next week and then we will switch to a Speech Pathologist that

specializes in Apraxia. Normally here in NY state a child will get 2-3x's/wk

speech for Apraxia but since my son has the Autism dx he will be still

getting 5x's/wk plus the speech group. Also we choose a therapy called

DIR/Floortime as opposed to ABA for him and he has made HUGE strides with it. He

imitates now(somethings are harder than others) Go with your gut since our mommy

instincts are usually always right! If I can help you in any other way please

feel free to contact me. 

" love all, trust a few, do wrong to none "

[Guest guest]

Oh and by the way, I forgot to mention before, just because your son isn't

talking yet or " flapping his arms " when he gets excited doesn't mean he has

Autism. There is usually more criteria involved for a child to be diagnosed

with Autism.

 

" love all, trust a few, do wrong to none "

From: NotefrmSue@... <NotefrmSue@...>

Subject: Re: [ ] New and Confused

Date: Wednesday, December 2, 2009, 10:21 PM

 

I don't have a lot of time to write tonight but did want to say WELCOME! I

started my journey with my son at age 18 mos and remember asking myself a lot of

the same questions that you are asking now. I am SO THRILLED for you that you

have your son in therapy already. It is so good for him to be getting a head

start this early. Keep plugging away, there will be a day when something happens

and all of a sudden you will fulfill your mommy's longing to hear his voice. In

my son's case this summer (when he was around 29 months) he made a huge leap in

comunication. I remember having self doubts and wondering if he would ever say

anything that anyone would ever understand. Now he is able to say more and more

each day. Be encouraged, your son is trying to communicate and that is great and

will help him so much as he develops skills.

My son also has low muscle tone but I just had him get a PT evaluation the other

day and she said that he doesn't need any PT but possibly some OT for the fine

motor skills. The fact that your son is reaching a lot of his milestones (like

walking) is very encouraging.

My best advice to you would be to just keep looking at the puzzle pieces and

trying to help him as best you can. It seems from what I read that every one of

us has had a different journey and gotten to higher levels by different things.

For example, my son's low muscle tone really affected his facial muscles and I

found that his greatest progress was when he began getting oral motor therapy.

I've heard others make the greatest strides from things like PROMPT or by

implementing a new suplement. Keep plugging away. I am glad personally to have

done a sleep study for my son as well as genetics testing. I believe those two

components are things that will help me help my son move forward in figuring

this out.

In answer to some of your questions: (1)My son was never diagnosed on the

spectrum although it seems to me that this does happen to a lot of parents (2)My

son's neurologist officially gave him the diagnosis at around 2.5 years and (3)I

think an official diagnosis from a dr (vs. the SLP) is the best help to you in

continuing to get your insurance to pay for his services.

Good luck!

Sue

[childrensapraxiane t] New and Confused

Hi I'm Krista and all these posts are really confusing me. Let me start by

saying that my son has not been diagnosed with apraxia but I suspect he

eventually will be. Here are some of my questions

1) Is it common for children with apraxia to be " wrongly " diagnosed young with a

spectrum disorder like PDD-NOS?

2) Is there an age that is too young for diagnosis?

3) What services are available for kids that have been diagnosed versus not

diagnosed?

My son is almost 20 months and I been given a lot of mixed advice and mixed

opinions. He is currently receiving private ST and OT that our insurance is

paying (so far) once a week. I am paying out of my pocket for 2 additional ST

sessions a week and 1 group ST/OT every other week. ECI is supposed to come

approximately 1x per week but so far they have only come 1x.

His main issues in my opinion are his speech (which he has a few approximations

but very few and no " real " words), jumping when excited (the arms flap at the

same time which is mostly why ppl think he is on the spectrum), and clumsiness.

I've been told that he has low tone in his trunk but he walked at 11 months and

is physically very in line with his age (if not ahead). There has been some

concern with his size because he is abnormally large at 37 inches and 40 lbs and

yes he will be 20 months on Friday. (No I'm not joking) He has so much to say

but I just can't make sense of most of it. Today he told me " III Da " which meant

" ice cream " . But again, most of the time I can't even make sense of what he

says. He certainly has some sensory issues as he is sensory seeking especially

with his jumping. I cannot possibly go into detail about everything that we are

going through but we are just trying to do the best by our son because he is so

smart and loving

and I know his voice is in there.

Thanks for reading and any information is greatly appreciated as we are just

starting all of this process.

Krista

[Guest guest]

Hi Krista! I thought I would let you know that my son, now 4, has done the

flapping arms and jumping when he gets excited too. We just completed a full

evaluation, and all the doctors agree it is not spectrum related. They

explained it to me like this....

Everyone has a tick of some kind, whether it appears when you're excited, mad,

or nervous. Most of us are aware of our ticks, and can normally control them by

talking and relieving the " stressor " of the tick. Well, when you can't

communicate effectively, there isn't really another avenue to relieving the

stressor than to just perform the tick.

As Austin's, my son, verbal abilities have increased, the flapping and jumping

have decreased. But, it still does pop up, like when he met Santa last week.

But what 4 year old excited about Christmas and meeting the big guy wouldn't

jump in excitement?

If it just happens out of excitement, I wouldn't be overly worried about it.

It's just his way of non-verbally communicating his feelings. Hope this helps!

>

> Hi I'm Krista and all these posts are really confusing me. Let me start by

saying that my son has not been diagnosed with apraxia but I suspect he

eventually will be. Here are some of my questions

> 1) Is it common for children with apraxia to be " wrongly " diagnosed young with

a spectrum disorder like PDD-NOS?

> 2) Is there an age that is too young for diagnosis?

> 3) What services are available for kids that have been diagnosed versus not

diagnosed?

>

> My son is almost 20 months and I been given a lot of mixed advice and mixed

opinions. He is currently receiving private ST and OT that our insurance is

paying (so far) once a week. I am paying out of my pocket for 2 additional ST

sessions a week and 1 group ST/OT every other week. ECI is supposed to come

approximately 1x per week but so far they have only come 1x.

>

> His main issues in my opinion are his speech (which he has a few

approximations but very few and no " real " words), jumping when excited (the arms

flap at the same time which is mostly why ppl think he is on the spectrum), and

clumsiness. I've been told that he has low tone in his trunk but he walked at

11 months and is physically very in line with his age (if not ahead). There has

been some concern with his size because he is abnormally large at 37 inches and

40 lbs and yes he will be 20 months on Friday. (No I'm not joking) He has so

much to say but I just can't make sense of most of it. Today he told me " III

Da " which meant " ice cream " . But again, most of the time I can't even make

sense of what he says. He certainly has some sensory issues as he is sensory

seeking especially with his jumping. I cannot possibly go into detail about

everything that we are going through but we are just trying to do the best by

our son because he is so smart and loving and I know his voice is in there.

>

> Thanks for reading and any information is greatly appreciated as we are just

starting all of this process.

> Krista

>

[Guest guest]

Hi and Welcome,

Your Dr. is not up on treating low T but with us I hope he will work out for

you. Starting on this dose it's a starting dose and you need to do labs in 2

weeks to be sure it working or you can end up lower then you started. Read this

cut and paste.

==================================

Starting on Androgel or Testim.

Yes this happens a lot you start on a low starting dose 5 grams when your brain

sees the testosterone in your blood even just a little it slows down even stops

sending the LH and FSH message to your testis to make the Testosterone you were

making. So lets say your labs for Total T were 350 you add this dose of gel

your brain sees this and you lose the base level you had before the gel.

Now lets say you need more then 5 grams most do so now all your left with is

what the gel is doing so lets say it's doing 200 so you lost 150.

The reason you feel good is your levels go up that 200 the gel is doing in the

first 2 weeks so your levels go up to 550 in theory. The brain sees this and

you fall back.

Why can this happen it might be how your putting on the gel with Androgel you

need to spread it over your upper arms and shoulders and down your back as far

as you can reach this is half of your dose then do the other side. Just spread

it over the area but don't rub it in.

The other thing is it's not getting through your skin good so you need more. If

you have a thyroid problem your skin will become thicker and gels and creams

don't get through the skin and you need to switch to shots.

I tell men when they go on Gels to retest in 2 weeks because you can end up

feeling worse. Most men just need more gel. Dr.'s that tell men to go on 5

grams of gel and come back in 8 to 12 weeks for labs don't know much about the

use of gels. Dr.'s that treat a lot of men for low T on gels see this happen

and test them again in 2 weeks.

When you go to do labs get up and shower that morning go do your labs and then

put in the gel after your blood test so you don’t spike up your labs. If you

can’t do labs in the morning shower put on the gel but don’t get any gel on

the spot they take the blood from. Do your labs about 6 hrs later.

Call your Dr. and tell him this and that your not feeling good you were but fell

back.

----------------------------------------------------------------------------

So keep exercising but go slow just walk for now until you get leveled and your

body un dose the damage done by having low T. Get your Estradiol levels check

out if they are high get them down post your levels when they come in you need

to be at about 20 pg/ml.

What you need to do is get your levels up onto the upper 1/3 of your labs range

and keep your Estradiol evels down. Then in time your going to get back to your

old self it's not over night and you feel better a little everyday.

Co-Moderator

Phil

> From: smfolden <no_reply >

> Subject: New and Confused

>

> Date: Saturday, June 12, 2010, 10:57 AM

> Hello guys.  I'm new to this

> site... and to this condition.  My doctor recently

> perscribed 5mg/day of Androgel for me based on my sustained

> low T level.  Over the past year, it has ranged between

> 170-185 ng/dL.  My TSH 3rd Gen level is 1.665 ulU/ml

> (I'm not quite sure what this is).  I'm not sure of the

> cause, but I was only born with one teste, could this be a

> potential factor?  I'm a little confused because

> everything that I've read on this site (as well as the

> Androgel site) indicates that T levels under 300-400 ng/dL

> should be treated; however, my lab results (from two

> seperate labs) indicate that the normal range is 175-780

> ng/dL... a much lower range.  I've only been on

> Androgel for a few days, but I haven't noticed any

> difference whatsoever.

>

> I'm being treated by a general practice doctor (who's

> great), is there anything else that I should consider or any

> ideas that I should raise with him?  Again, he recently

> perscribed Androgel, but told me to come back for a

> follow-up visit in a couple months.  Shouldn't I have

> some follow-up bloodwork after 3-4 weeks to see how the

> Androgel is affecting me?

>

> I'm a 39 year-old male who excercises regularly. 

> Approx four years ago, my body seemed to fall off a

> cliff.  I gained a significant amount of fat (approx 60

> pounds), and currently weigh 260 lbs (I'm 5-10 " ).  I

> developed all the basic cues for low T: low energy, lack of

> concentration, low sex drive, etc... I've even shrunk an

> inch in height.  Over the recent years, every time I

> begin a diet/excercise regime, I get sick after a couple

> weeks... very frustrating.  All my other bloodwork

> (thyroid, glucose, etc) appears to be fine.

>

> - O.

>

>

>

> ------------------------------------

>

>