thank you

[Guest guest]

,

Also not Dana. I wanted to also comment on the peeing through

jammies at night. My son used to do this also. For us it meant

that he was detoxing something that he wasn't tolerating. For

example, we upped a lot of supplements ina short amount of time and

he was peeing every night through his jammies. We then stopped

everything and slowly (and I do mean slowly) added supplements back

in. We never stopped the enzymes. That was the only thing we kept

in. After stopping, we treated for Bacteria and yeast before adding

more supplements. I do think I've heard that yeast can cause excess

urination as well. No-fenol with help with yeast.

Hope that helps!

- mom to Sam 2.9 ASD

> Dana,

> I will look into the No-Phenol. It'll be 3 weeks tomorrow that we

> started the other 2 enzymes--what drastic improvements in

general!

> Reading up on the posts here the last few days has me nodding my

> head seeing that we are doing things other families are doing

too.

> Lately, Ronan's diapers have been so full of pee--he wets through

> his jammies and bedding almost every night. I'm not sure if that

is

> common with other kids or not. He had two huge BMs at school

today,

> very stinky too.

>

> A couple of questions since I am still so new at this: what is

die

> off and how does it happen? Is it stictly for yeast in the gut

that

> is being killed or other yuckies too? I don't know if Ronan has

an

> issue with this or not.

>

> I'm thinking of trying gluten-free for a bit to see if we see any

> other changes. That will be hard since we have only a few *safe*

> foods still.

>

> We go back to the neurologist in 13 weeks to check up on the

> seizures--they'll be amazed to see Ronan walk into the office all

by

> himself instead of using his walker

>

> Thanks,

[Guest guest]

When we started No Fenol we had so much excess urine, that we had to change

Austin's diaper more then once an hour! It took a good 2 weeks before urine

went back tonormal/

shel4336 <shel4336@...> wrote:,

Also not Dana. I wanted to also comment on the peeing through

jammies at night. My son used to do this also. For us it meant

that he was detoxing something that he wasn't tolerating. For

example, we upped a lot of supplements ina short amount of time and

he was peeing every night through his jammies. We then stopped

everything and slowly (and I do mean slowly) added supplements back

in. We never stopped the enzymes. That was the only thing we kept

in. After stopping, we treated for Bacteria and yeast before adding

more supplements. I do think I've heard that yeast can cause excess

urination as well. No-fenol with help with yeast.

Hope that helps!

- mom to Sam 2.9 ASD

> Dana,

> I will look into the No-Phenol. It'll be 3 weeks tomorrow that we

> started the other 2 enzymes--what drastic improvements in

general!

> Reading up on the posts here the last few days has me nodding my

> head seeing that we are doing things other families are doing

too.

> Lately, Ronan's diapers have been so full of pee--he wets through

> his jammies and bedding almost every night. I'm not sure if that

is

> common with other kids or not. He had two huge BMs at school

today,

> very stinky too.

>

> A couple of questions since I am still so new at this: what is

die

> off and how does it happen? Is it stictly for yeast in the gut

that

> is being killed or other yuckies too? I don't know if Ronan has

an

> issue with this or not.

>

> I'm thinking of trying gluten-free for a bit to see if we see any

> other changes. That will be hard since we have only a few *safe*

> foods still.

>

> We go back to the neurologist in 13 weeks to check up on the

> seizures--they'll be amazed to see Ronan walk into the office all

by

> himself instead of using his walker

>

> Thanks,

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

[Guest guest]

> Lately, Ronan's diapers have been so full of pee--he wets through

> his jammies and bedding almost every night.

This is common as the body adjusts to enzymes. Should last maybe 3

weeks or so.

> A couple of questions since I am still so new at this: what is die

> off and how does it happen?

When yeast or other nasties are dying, they release toxins, which can

cause problems for most people.

>>Is it stictly for yeast in the gut that

> is being killed or other yuckies too?

Bacteria can do this. Not sure about viruses because they are not

technically alive, so they don't technically die, they are just

eliminated. Altho my son did have rash when the viruses were leaving

his body.

> We go back to the neurologist in 13 weeks to check up on the

> seizures--they'll be amazed to see Ronan walk into the office all by

> himself instead of using his walker

Very good!

Dana

[Guest guest]

Hi ,

Of course, all kids are different, but I can tell you what

accommodations have been useful to my son over the years. He has had

occupational therapy to address sensory issues, large and small motor

issues and handwriting issues. He has had speech therapy to address

pragmatics. Most kids with AS could benefit from a healthy dose of

speech therapy, focusing on pragmatics (social speech). He also gets

additional time on tests, but usually doesn't take it. He has a quiet

room accommodation for when classes get too noisy for him. He gets

social skills group, and group counseling once a week. I think that's

about it. I hope this is helpful. My son is 17 and a junior in high

school. Feel free to ask any questions that pop up.

Liz

On May 23, 2005, at 7:10 PM, McGuine wrote:

> Dear , Thank you so much for replying to my message. I have sent

> messages to other sites and got no response at all, (talk about

> feeling alone in the world) when I read your message it brought tears

> to my eyes, tears of joy for I feel like maybe I have finally found

> the right place. I hope I don't make you sorry that you replied but I

> have so many questions that I don't even know where to begin. Well , I

> will start with what is happening at the moment. The school Tom

> attends has agreed to evaluate him to see if he needs an IEP or a 504.

> It's obvious that he needs some accommodations, I am surprised that he

> has made it this far without any help. Are there certain evaluations

> I should make sure they are doing? Should I assume that the evaluators

> know what they are looking for? Can you tell me what kind of

> accommodations are made for AS kids? I know that this sounds like

> alot , I'm sorry, I just hope you can help. I look forward to hearing

> from you soon THANK YOU.....

>

>

[Guest guest]

Here are some great sites:

_AspergersSyndrome_

(http://maxweber.hunter.cuny.edu/pub/eres/EDSPC715_MCINTYRE/AspergersSyndrome.ht\

ml)

_Asperger Info: IEP GOALS_

(http://www.udel.edu/bkirby/asperger/IEP_Goals.html)

_Asperger Info: Specially Designed Instructions For Educators: IEP

Modification/Adaptations/Support Checklist_

(http://www.udel.edu/bkirby/asperger/IEP_Modif_Checklist.html)

[Guest guest]

Hi Liz, thanks for the info, I have been questioning the schools/teachers

for years about OT (for his hand writing) but they would just say " don't

worry, he'll grow out of it. everything you mentioned is everything

that i hoped I could get for Tom. You have been so helpful and such a sigh

of relief-... to think that I am finally getting some good answers and some

sound advice,...all of you at this site have been so helpful (even just to

know you are there) Thank you all so much!!

Re: ( ) THANK YOU

> Hi ,

> Of course, all kids are different, but I can tell you what

> accommodations have been useful to my son over the years. He has had

> occupational therapy to address sensory issues, large and small motor

> issues and handwriting issues. He has had speech therapy to address

> pragmatics. Most kids with AS could benefit from a healthy dose of

> speech therapy, focusing on pragmatics (social speech). He also gets

> additional time on tests, but usually doesn't take it. He has a quiet

> room accommodation for when classes get too noisy for him. He gets

> social skills group, and group counseling once a week. I think that's

> about it. I hope this is helpful. My son is 17 and a junior in high

> school. Feel free to ask any questions that pop up.

>

> Liz

>

> On May 23, 2005, at 7:10 PM, McGuine wrote:

>

>> Dear , Thank you so much for replying to my message. I have sent

>> messages to other sites and got no response at all, (talk about

>> feeling alone in the world) when I read your message it brought tears

>> to my eyes, tears of joy for I feel like maybe I have finally found

>> the right place. I hope I don't make you sorry that you replied but I

>> have so many questions that I don't even know where to begin. Well , I

>> will start with what is happening at the moment. The school Tom

>> attends has agreed to evaluate him to see if he needs an IEP or a 504.

>> It's obvious that he needs some accommodations, I am surprised that he

>> has made it this far without any help. Are there certain evaluations

>> I should make sure they are doing? Should I assume that the evaluators

>> know what they are looking for? Can you tell me what kind of

>> accommodations are made for AS kids? I know that this sounds like

>> alot , I'm sorry, I just hope you can help. I look forward to hearing

>> from you soon THANK YOU.....

>>

>>

[Guest guest]

, it is SO awsome that you are getting some help where you most

desperately need it:) FANTASTIC!

You are definitely NOT alone here! It is amazing what every one (and

I mean EVERY one) has to offer here. Even subjects that I have been

to bashfull to talk about!!! Just amazing!

I can feel your excitement, mainly because I was where you are now!

No one here can EVER be sorry that we reply. That is why we are

here! WE each can learn from each other, but what is more exciting

for me, is that FINALLY I feel like I have a purpose in life! I can

offer so much (from my insight!) and learn so much at the same time!

I hope your son gets an IEP> I think the best testing we have had

that helped us the most, is through a Neuropsychologist! The testing

they did at the school was ok, but they didn't understand Aspergers,

and kept making points to tell me WHY my child wasn't AS. (And now

he is diagnosed!)

Some testing I think they will do would be O.T. and Speech (the

pragmatics of speech can be such a problem with us Aspies!)

But that is only a start. we had the school psychologist do testing

too, and she was pretty good, but still, she didn't understand AS.

Don't assume that the evaluators have a clue as to what they are

looking for. Get yourself well prepared. Understand as much about AS

as you can, so that you can be a great advocate!

If you get that book, the Oasis guide to AS (make sure it is the NEW

revised edition) That has some great things to help you understand

what kind of testing you should do, and what these kids need!

Your school may be knowledgable, but make yourself prepared!

That would be my first step I recommend for you!

As far as accomodations, well, my school was willing to do some

therapies (I think it was P.T., O.T. but I don't think speech was

even done, because THEY COULD TALK WELL!) ugh! But what would help

is exactly what someone else just said with her son, having a place

for him to go if he needs to get out,,,, getting the social area

helped out with special classes! Her post was great too, and I plan

on taking some of her ideas and using it as my own personal HIEP

(Home Individualized education program)

AS kids are still being 'discovered' so a lot of places are not up

to date and how to handle them and what to do!

Hope that is a good start! I am ready for more:)

(and you thought you wrote a lot!)

Let me tell you one thing, as you probably know, Aspies can 'talk a

lot! " hehehe

Well, My 'perservation' (I guess you could call it that!) Is in

Education Mainly of AS children, (they are all mine) and Asperger

Syndrome. I live it and I have 3 children with it, so I want to be

HIGHLY educated in that field! I could probably go on for hours!

No one can even tell I am an Aspie, Unless they spend time with me

and have to endure my endless talking!!! (But as an adult I have

learned to 'breathe' and give the other people a chance to talk!!!!)

You should see what my husband puts up with. HAHA!!!

ASk away!!!!!!

Hugs from *smile*

[Guest guest]

Hi again, Kerri!

I'm Judi, 59 yo wife/grandmother (to 2-year old triplets and a 5-year

old.) I don't have RA, but I do have fibro and Dercum's Disease. It

took several years for me to get diagnosed, and when I did it was

because I did all the legwork and found a good group of doctors who

diagnosed me. So far there's no cure (it's considered a " rare "

disease) and no one doing any research on the disease. It's one of

those diseases that doctors love to tell us " you're fat, lazy, and it

doesn't really hurt. " So don't feel like you're alone in having to

wait for a diagnosis!

I was really angry, depressed, frustrated, desperate, you name it at

first. I wanted my old life back, the one where I could walk miles,

ride a bike, play tennis, run with the little ones, garden, clean

house, you name it. I felt like a failure to my husband and not a

very good grandmother, but you know what? My husband still loves me,

and the grandchildren don't even pay any attention to what I can't

do, they only want me to love them. That's all your children want,

and if you can't go to all their activities at the moment, you will

eventually. The doctors will get your RA under control, you'll heal

from your surgery, and you'll enjoy each day as it comes. You're

awfully young to have such an awful disease, but challenge knows no

age. Set small goals for yourself, and gradually enlarge the goals

as your capabilities improve, and reward yourself for any small

accomplishment just as you would your children. You have strength

you haven't tapped yet.

You're a very special person, and the world would be just a bit

darker if you weren't in it!

Judi

[Guest guest]

Kerri,

Please listen to Judi, she is exactly right, even though it doesn't seem

fair or right. This is the time to smell the roses .....take small deliberate

steps and move forward with love. YOU are the same.....WE are the same as

before we got sick....... we just can't jump on the bed anymore. I sit and hop

on my bottom, and laugh at myself now because I am the first monkey who fell

off the bed.

Love,

Carol M. in CA

[Guest guest]

Tess,

I consider YOU a blessing and a gift.

((((((((((((((hugs)))))))))))))

a

On Sep 22, 2005, at 12:53 PM, Grammi B wrote:

> You are all so sweet and encouraging. This group is one of the

> most loving I have found...and you are all a blessing and a gift!

>

> Love...

>

> Tess

>

>

[Guest guest]

Good luck to you and MJ!

Natasha

> I just want to say fairwell and thank you to everyone for their

support with my son

> M.J. I wasn't very active in the group, however it was this group

that helped guide me in making the right decision for my son. My son

MJ is now 9 months old. He wore the helmet 23 hrs of the day for 2

1/2 months. It was horrible, but we made it through. MJ still has to

wear it in the evenings until his soft spot closes to avoid

regression. Although tough, it's was the best decision we made,

thanks to this group providing us with info. Thank you for all your

support.

>

> Torpey

[Guest guest]

Good luck to you and MJ!

Natasha

> I just want to say fairwell and thank you to everyone for their

support with my son

> M.J. I wasn't very active in the group, however it was this group

that helped guide me in making the right decision for my son. My son

MJ is now 9 months old. He wore the helmet 23 hrs of the day for 2

1/2 months. It was horrible, but we made it through. MJ still has to

wear it in the evenings until his soft spot closes to avoid

regression. Although tough, it's was the best decision we made,

thanks to this group providing us with info. Thank you for all your

support.

>

> Torpey

[Guest guest]

Hi . I'm so happy to hear that the 23 hours a day is over for

you. Have you gone back to see Dr. Singh. She must be happy for you

that you are almost finished. I wish you the best and keep in touch

with us and tell me how MJ is doing. Debbie and Brielle

-- In Plagiocephaly , mtorpey12@a... wrote:

> I just want to say fairwell and thank you to everyone for their

support with my son

> M.J. I wasn't very active in the group, however it was this group

that helped guide me in making the right decision for my son. My son

MJ is now 9 months old. He wore the helmet 23 hrs of the day for 2 1/2

months. It was horrible, but we made it through. MJ still has to wear

it in the evenings until his soft spot closes to avoid regression.

Although tough, it's was the best decision we made, thanks to this

group providing us with info. Thank you for all your support.

>

> Torpey

[Guest guest]

Hi . I'm so happy to hear that the 23 hours a day is over for

you. Have you gone back to see Dr. Singh. She must be happy for you

that you are almost finished. I wish you the best and keep in touch

with us and tell me how MJ is doing. Debbie and Brielle

-- In Plagiocephaly , mtorpey12@a... wrote:

> I just want to say fairwell and thank you to everyone for their

support with my son

> M.J. I wasn't very active in the group, however it was this group

that helped guide me in making the right decision for my son. My son

MJ is now 9 months old. He wore the helmet 23 hrs of the day for 2 1/2

months. It was horrible, but we made it through. MJ still has to wear

it in the evenings until his soft spot closes to avoid regression.

Although tough, it's was the best decision we made, thanks to this

group providing us with info. Thank you for all your support.

>

> Torpey

[Guest guest]

,

I am happy for you and MJ and hope your night wearing goes by

quickly. I wish you and your family all the best.

CAROLG

> I just want to say fairwell and thank you to everyone for their

support with my son

> M.J. I wasn't very active in the group, however it was this group

that helped guide me in making the right decision for my son. My son

MJ is now 9 months old. He wore the helmet 23 hrs of the day for 2

1/2 months. It was horrible, but we made it through. MJ still has

to wear it in the evenings until his soft spot closes to avoid

regression. Although tough, it's was the best decision we made,

thanks to this group providing us with info. Thank you for all your

support.

>

> Torpey

[Guest guest]

,

I am happy for you and MJ and hope your night wearing goes by

quickly. I wish you and your family all the best.

CAROLG

> I just want to say fairwell and thank you to everyone for their

support with my son

> M.J. I wasn't very active in the group, however it was this group

that helped guide me in making the right decision for my son. My son

MJ is now 9 months old. He wore the helmet 23 hrs of the day for 2

1/2 months. It was horrible, but we made it through. MJ still has

to wear it in the evenings until his soft spot closes to avoid

regression. Although tough, it's was the best decision we made,

thanks to this group providing us with info. Thank you for all your

support.

>

> Torpey

[Guest guest]

Ok Mike glaid to here your feeling so good and you are welcome.

Phil

maiku000215 <mikedamours215@...> wrote:

I'm having a good day today. I'm happy for everything I have. I love

this group. I like this group's attitude. I love the whole idea.

I want to thank so many people. I want to thank for letting

me try to help you all. Thanks Mr. Technology.

I know my testosterone is unbelievable low, and I know I could

and still can't bear children, however It was technology again that

allowed me to have two wonderful children. Artificial insemination

was A okay.

I want to thank my country. I want to thank Mr. Luck for allowing

me to be born here in North America.

I also want to thank for this wonderful disco music that

I'm listening to right now while I'm typing this.

My conclusion to all this is I'm having a good day.

Thanks Dave, Philip, Rey and for responding to all my letters.

Who knows maybe some of us in this group will meet some day.

Today, I'm going to drive my car above the valley cloud and

snowboard in the sunshine. Thank God I can do this.

Mike

Sayonara, Adiou, Au revoir, Good bye

[Guest guest]

You are very welcome. For some of us, this is a very lonely

condition to have. Especially if you have it before you are married

with children. I have to thank you for making my life fuller.

Rey

>

> I'm having a good day today. I'm happy for everything I have. I love

> this group. I like this group's attitude. I love the whole idea.

> I want to thank so many people. I want to thank for letting

> me try to help you all. Thanks Mr. Technology.

> I know my testosterone is unbelievable low, and I know I could

> and still can't bear children, however It was technology again that

> allowed me to have two wonderful children. Artificial insemination

> was A okay.

> I want to thank my country. I want to thank Mr. Luck for

allowing

> me to be born here in North America.

> I also want to thank for this wonderful disco music that

> I'm listening to right now while I'm typing this.

> My conclusion to all this is I'm having a good day.

> Thanks Dave, Philip, Rey and for responding to all my letters.

> Who knows maybe some of us in this group will meet some day.

> Today, I'm going to drive my car above the valley cloud and

> snowboard in the sunshine. Thank God I can do this.

>

> Mike

>

> Sayonara, Adiou, Au revoir, Good bye

>

[Guest guest]

lol whoops been on the sauce again me!!! ;-)

emma

Emma <eeejay174@...> wrote:

hi sue

received the money yesterday, thanks a lot really appreciated :-)

but - you have sent too much!!!

but thank you again - did i tell you the boys have taken up dancing?

kai has ballet and jazz dancing on a friday night and tap, theatre dance and

body conditioning on a sat afternoon. fian has ballet and tap sat morning - the

extra money will pay for the shoes!! ballet and tap - they really enjoy it - can

you believe it!!

so thats brill,

thanks again sue - ill be buying their 'kit' in january - waiting for the

uniform to change beginning of jan - so ill send you and simon some photos

oh ive also found some scd legal baked beans hurah!! boys love them so ill

bring some down

take care em

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

Model Search - Could you be the next catwalk superstar? Check out the

competition now

[Guest guest]

,

I echo what Kim said wholeheartedly. Ditto! Thanks, Kim, for stating it so

succinctly. Thank you, , for your dedication. Thank you all list members

for sharing your experiences and knowledge.

Jill B

[ ] Thank you

,

Thank you for posting the story about the poor little baby that died because

of her therapist (ABA or not). Yes, ABA, was in the story, but I never took

it as you posting something bad about ABA therapy or ABA therapists. I took

the story as you posting it for us to all be aware of the individuals that

work

with our children.

I do believe at times, we as parents of kids with special needs, feel that we

are trusting these individuals who have gone to college to know what's best

for our kids and have our kids best interest in mind. But just as we have

learned that Priest have sexually abused children, Police officers can beat

someone up for unjust cause, doctors can perform without a license or operate

on the

wrong side of the body, we learn that these people make mistakes and are

real. Good and bad. We need to be aware.

I feel over the last few weeks, this " grouplist " is a little sensitive to

many topics and I think we really need to all lighten up. We are all on the

journey together. It's a bumpy road and we just want to get to the same

destination -- what is best for our children. Let's not forget why we are

here --

Thank you again for reminding us to be aware of the individuals working

with our children. I think we all get a little too comfortable at times in

this crazy world.

Again, everyone, remember why we are here and stop " reading " into some of

these posts.

Regards,

Kim Vallin

[Guest guest]

Thank you .

Shepard Salzer <_Shepard@...> wrote:

By J & J she probably means & 's.

S S

Thank you Roz for your inputs. Which Baby Power has no chemical and where do you

get them. What's J & J's? pls forgive me if I sound stupid here.

Eva

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

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

[Guest guest]

Dear Joe Castronove, Bruce, Ken:

Thank you very much for your careness. My Dad now just finished his 4th chemo,

On April 18, he will begin his 5th one. ( he will have total 6 chemo). He is

doing OK, even though there is roughness during the chemo. He's still taking his

Chinese herbal medicine since his 1st chemo, and he wil continue to take it for

the next three years.

There is no cottage cheese in China, he still take one spoon flaxseed oil in

the morning and one spoon fish oil in the evening. Because his stomach surgery,

he can't take too much juice, he eats one apple and orange one day, and eats

with family together, but he eats one sea cucumber (or sea slug, trepang). It is

high protein. He goes out for a walk if the wheather is nice.

Bruce, I read your story through the group, I inspired by you, I wish you

heathier day by day.

God bless!

Qing

[Guest guest]

Josh we are here for you. Please just ask anything and

i am sure someone can help. This is an awesome group!!

I just found out i am clear of the virus. I have only

been on treatment 5 months and they have worked so

far. I am a very optimic person. If you do have to do

the treatments, please have your dr. Put you on

anti-depressants. And drink lots and lots of water!!I

am here if you have any questions.Good luck and keep

in touch!!

--- heartside76 <JOSHUA_PELTON@...> wrote:

> hi brenda thanx for the encouragment it is really

> appreciated since

> i'm just recently becoming symptomatic,and as i was

> saying i will be

> starting tx provided my biopsy goes well,,,,thanx

> again josh

>

>

>

>

__________________________________________________

[Guest guest]

WOOOOOOHOOOOOOO !

I am SOOOO happy to hear this. Thank you so much for sharing your

awesome update with us. Please let us know how you make out on the 12th.

>

> I want to thank everyone for the advice I was given. We contacted

> Angel Flights and it looks like it will pull through for us. So we

> will now have transporation to and from Phoenix. My insurance got back

> with us and they will cover most of it provided the measurments are

> more than 6mm (I'm not exactly sure how the measurments are taken).

> This group is a wonderful thing and the support is amazing. Thank you

> all for your help. first appointment for his DOC Band will be on

> June 12. and Evan

>

[Guest guest]

,

Sounds like you have been hard at work. Woohoo on theg ood news.

Keep us posted, we'll be counting the days with you

na, DOC Grad 2/04

Kiersten, DOC Grad 4/06

www.thefilyaws.com/plagio/plagio.html

>

> I want to thank everyone for the advice I was given. We contacted

> Angel Flights and it looks like it will pull through for us. So we

> will now have transporation to and from Phoenix. My insurance got

back

> with us and they will cover most of it provided the measurments

are

> more than 6mm (I'm not exactly sure how the measurments are

taken).

> This group is a wonderful thing and the support is amazing. Thank

you

> all for your help. first appointment for his DOC Band will

be on

> June 12. and Evan

>