Update

[Guest guest]

In a message dated 4/6/03 8:49:19 PM Eastern Daylight Time,

barb2743@... writes:

> I see a big change in him for the good. We still need to redirect him

> sometimes, but responds right away to what he is told. This week will be a

> big step, the school district wants to get the staff at day treatment

> involved in his IEP. I'm hoping that things go well there. They, the day

> treatment staff, want to discharge him to school this week. I don't want

> him to go to school until everything is in place. Please pray for us this

> week that everything goes well, and that he will have a place in school

> where he feels comfortable. The testing has shown that he is a very smart

> kid. Before treatment he wanted to quit school because he wasn't happy.

> He now is looking forward to continue on with his high school education.

> I'm afraid that if things aren't in place first that he will want to quit

> again, and so the cycle will start all over again.

I am hoping that things work out with school. Tell us how it goes!

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

In a message dated 4/6/2003 5:50:28 PM Pacific Daylight Time,

barb2743@... writes:

> Please pray for us this week that everything goes well, and that he will

> have a place in school where he feels comfortable.

Absolutely, Barbara!!! Keep us all posted.....glad to hear things are

looking up!

Johanna

[Guest guest]

Barbara

Great news!! I hope they get everything ready for him before they sent him

back out there.

It could make all the difference in the world. I will pray for you -

and the rest of your family.

Good luck and keep us updated.

Take care,

Dawn

Hi to all,

will be home one week tomorrow from residential treatment. He is doing

really well. Right now they have him going for day treatment for a half a day. I

see a big change in him for the good. We still need to redirect him sometimes,

but responds right away to what he is told. This week will be a big step, the

school district wants to get the staff at day treatment involved in his IEP. I'm

hoping that things go well there. They, the day treatment staff, want to

discharge him to school this week. I don't want him to go to school until

everything is in place. Please pray for us this week that everything goes well,

and that he will have a place in school where he feels comfortable. The testing

has shown that he is a very smart kid. Before treatment he wanted to quit school

because he wasn't happy. He now is looking forward to continue on with his high

school education. I'm afraid that if things aren't in place first that he will

want to quit again, and so the cycle will start all over again. remember when I

said that the doctor at residential didn't see AS? Well his discharge paperwork

said AS, I wonder what changed his mind? ( grin ) Could be he saw the true

? I told the Dr that first dx the story and he asked me if that Dr

ever saw a high functioning aspie? His guess is as good as mine. Will keep you

all updated as we go through the week. Barbara

[Guest guest]

> > Please pray for us this week that everything goes well, and that he will

> > have a place in school where he feels comfortable.>

with all my heart !!

Fania

[Guest guest]

Update

We are fairly new to enzyme therapy. I posted to the group last week about the

progress we are seeing with our son. I'm very pleased to report that those

gains plus more are continuing to evolve. We had our IEP this week and a direct

quote from one of the teachers involved " If you were not there to see the

changes, you can not fully explain to someone what has taken place. " He showing

remarkable ability to learn and retain information. Starting enzymes and making

the progress that our son has made, in my opinion, made a huge difference in the

IEP process. I feel like the team has a much better idea of the progress that

can be obtained with our son. They have always been optimistic about his

abilities, however they set the bar much higher for next year given all his

progress. Some new skills that are emerging are, an ability to negotiate with

our son, he is able to entertain himself appropriately in unfamiliar

environments, he is playing appropriately and for extended periods of time with

his sister, he is less interested in TV, he is asking more questions instead of

giving rote responses, hyperactivity is starting to reduce, he is initiating and

sustaining conversations, creative play skills are becoming more sophisticated.

We have discontinued the diet for the most part. I have not been brave enough

to introduce whole milk. However we have switched to a milk replacement product

that has casein. We are seeing more gains than we ever did on the diet.

Hopefully he will continue to make gains and retain these new skills. My

husband I wish we would have fully understood the enzymes and dosing

requirements a couple of years ago. This is a great group, and I am learning a

lot from all the post.......Thank you all.

[Guest guest]

Thank you for sharing !

Update

We are fairly new to enzyme therapy. I posted to the group last week about the

progress we are seeing with our son. I'm very pleased to report that those

gains plus more are continuing to evolve. We had our IEP this week and a direct

quote from one of the teachers involved " If you were not there to see the

changes, you can not fully explain to someone what has taken place. " He showing

remarkable ability to learn and retain information. Starting enzymes and making

the progress that our son has made, in my opinion, made a huge difference in the

IEP process. I feel like the team has a much better idea of the progress that

can be obtained with our son. They have always been optimistic about his

abilities, however they set the bar much higher for next year given all his

progress. Some new skills that are emerging are, an ability to negotiate with

our son, he is able to entertain himself appropriately in unfamiliar

environments, he is playing appropriately and for extended periods of time with

his sister, he is less interested in TV, he is asking more questions instead of

giving rote responses, hyperactivity is starting to reduce, he is initiating and

sustaining conversations, creative play skills are becoming more sophisticated.

We have discontinued the diet for the most part. I have not been brave enough

to introduce whole milk. However we have switched to a milk replacement product

that has casein. We are seeing more gains than we ever did on the diet.

Hopefully he will continue to make gains and retain these new skills. My

husband I wish we would have fully understood the enzymes and dosing

requirements a couple of years ago. This is a great group, and I am learning a

lot from all the post.......Thank you all.

[Guest guest]

This is fantastic reading . I love these success stories. It just

fills me with so much hope.

Debbie

Update

Hi All,

Our success with enzymes continues. Monday night our son had a T-ball

game, and for the first time I didn't spend 98% of the time at dugout making

sure our little guy didn't escape. In fact I sat in the crowd (like a

normal mom) with the rest of the parents and enjoyed the humorous behaviors

afforded to parents that have the luxury of enjoying a T-ball game. What a

treat that was. During the game our son left the dugout one time and that

was to come ask to be taken to the restroom (five weeks ago we were still

having to remind him to use the restroom, instead of squeezing his legs

together). Tonight my daughter had her first coach pitch softball game, and

I was not distracted from the pleasure of watching her play ball. In fact

our son behaved very appropriately during the hour and a half game, with a

minimal amount of redirection. Is seem unbelievable that in one short month

our lives have changed so much. Earlier today he was thumbing through the

local telephone book yellow pages section, and realized that the letter at

the top of the page were going in alphabetical order, and when got to the

end of the alphabet sequence, he told me he need an X, well there were no X

entries, so I told him there are no X's and he told me yes there are X's

(literally). Coming from a kiddo who 5 weeks ago had trouble forming rote

sentences, let alone spontaneous verbal thoughts, I'm absolutely blown away.

We receive a communication folder in our sons back pack everyday and

typically he has 2-3 days that he refused work, well for the last two weeks

we have not seen any refusals notated in the book. Before enzymes the

school was working on identifying upper case letters A-S (started this goal

at the beginning of the year) he has since achieved not only the upper case

letters, but the lower case letter identification as well. He was counting

1-39, and identifying 1-19 consistently missing 11 and 12, he is now

counting to 100, and identifying through 100 without missing any numbers.

Life just keeps getting better and better. I'm so thankful that I by chance

picked up s book on enzymes. I had tried enzymes about a year ago,

with not a clue as to what I was doing and discounted them as a treatment

that just wasn't for us. WOW was I wrong! Armed with some good solid

information about how enzymes work and how to approach their implementation,

I now know that this is exactly the catalyst that we needed to bring all our

other efforts to the surface. I'm thankful everyday for the miracle we are

experiencing, and am grateful to everyone who played a part in making this

information and treatment available.

[Guest guest]

That's Wonderful. So many wonderful updates, my cheeks hurt from smiling so

much.

Update

Hi All,

Our success with enzymes continues. Monday night our son had a T-ball game,

and for the first time I didn't spend 98% of the time at dugout making sure our

little guy didn't escape. In fact I sat in the crowd (like a normal mom) with

the rest of the parents and enjoyed the humorous behaviors afforded to parents

that have the luxury of enjoying a T-ball game. What a treat that was. During

the game our son left the dugout one time and that was to come ask to be taken

to the restroom (five weeks ago we were still having to remind him to use the

restroom, instead of squeezing his legs together). Tonight my daughter had her

first coach pitch softball game, and I was not distracted from the pleasure of

watching her play ball. In fact our son behaved very appropriately during the

hour and a half game, with a minimal amount of redirection. Is seem

unbelievable that in one short month our lives have changed so much. Earlier

today he was! thumbing through the local telephone book yellow pages section,

and realized that the letter at the top of the page were going in alphabetical

order, and when got to the end of the alphabet sequence, he told me he need an

X, well there were no X entries, so I told him there are no X's and he told me

yes there are X's (literally). Coming from a kiddo who 5 weeks ago had trouble

forming rote sentences, let alone spontaneous verbal thoughts, I'm absolutely

blown away. We receive a communication folder in our sons back pack everyday

and typically he has 2-3 days that he refused work, well for the last two weeks

we have not seen any refusals notated in the book. Before enzymes the school

was working on identifying upper case letters A-S (started this goal at the

beginning of the year) he has since achieved not only the upper case letters,

but the lower case letter identification as well. He was counting 1-39, and

identifying 1-19 consistently missing 11 ! and 12, he is now counting to 100,

and identifying through 100 without missing any numbers. Life just keeps

getting better and better. I'm so thankful that I by chance picked up s

book on enzymes. I had tried enzymes about a year ago, with not a clue as to

what I was doing and discounted them as a treatment that just wasn't for us.

WOW was I wrong! Armed with some good solid information about how enzymes work

and how to approach their implementation, I now know that this is exactly the

catalyst that we needed to bring all our other efforts to the surface. I'm

thankful everyday for the miracle we are experiencing, and am grateful to

everyone who played a part in making this information and treatment available.

[Guest guest]

Congratulations, ! Stories like yours put tears in my eyes. I'm

so glad for you and your children.

Lorna

[Guest guest]

> well..........

> -today we enrolled ds in Judo class. twice a week. I really liked

the teacher and his attitude. He checked ds for balance and

coordination etc in such a manner ds dd not even noticed, just

thought he was acting silly........... then we saw a lesson and I was

impressed with the teacher's way of both being encouraging and

accepting AND being firm and demanding.

> I have a feeling that if ds really hits it off with judo and the

teacher, this can be a great thing for him. from obedience , to

self respect through team working , self control, and even sensory

wise (lots of pulling, pushing, touching etc)..... ds is excited

about starting. he gets his first uniform on the second class.......

I am most excited about the " Ma Te " (?) command:: you just drop

whatever you were doing and stand still and apart from your

partner/opponent. do you think I will be able to generalize it to,

say, gameboy??

> ds was surprised to learn that the terms in Judo are in pokemon

language...

> -Big Brother is working out ok.

> -Met the regional school psych and found out that overall everyone

involved thinks that considering what ds has been through, he has

done quite well at the new school..............

> I ended up being invited to lecture on AS to the entire staff of

the regional Psych Services...........

> Baby N started talking in full sentences, just like in the famous

joke - he suddenly blurted " it does not come out! " when trying to

squeeze ketchup.

> I guess while everyone was getting nervous about him not talking

at all, he was just satisfied that everything was going his

way.....lol

> F

Fania,

All GREAT news!!!

Kathy

[Guest guest]

In a message dated 8/28/2003 6:12:13 PM Pacific Daylight Time,

uplift@... writes:

> I ended up being invited to lecture on AS to the entire staff of the

> regional Psych Services...........

See Fania....this is just the beginning. Soon you could be Fania renown

speaker going on a US tour

Johanna

[Guest guest]

--- In , pjand3kids <pjand3kids@j...>

wrote:

>>Well, he's been on B6, magnesium,

calcium and zinc for 6 weeks and he's doing fantastic. The school

reports that he is awesome! He is much more in control of his

behavior and has no more than two meltdowns a day. They only last a

brief amount of time, and he's able to modulate his mood on his own.

His language has increased and he is having less attention and

impulsive issues. I'm very excited!

YAY! Congrats.

Dana

[Guest guest]

Sorry to hear he's still under the weather. I can relate. Both I and

the kids have had nasty colds. I just wish I could say I lost 3

pounds. Seriously though I know that is alot for a child. I

freaked when Hunter lost 4 pounds on zoloft. He's so skinny to begin

with. I hope he bounces back soon. Meanwhile enjoy the kiting.

Hugs, a

[Guest guest]

,

Will he drink a smoothie?

Anne

[Guest guest]

In a message dated 9/23/2003 6:58:56 PM Eastern Daylight Time,

annomalous2000@... writes:

> Will he drink a smoothie?

>

No. He has problems with textures and gags. He is doing a little better. He

has started to eat so he hasn't lost any more weight. It is slow. Yesterday he

had no breakfast. I assume he ate the pretzels I sent to school. He had about

1/3 of a slice of pizza for lunch, and a little chicken and rice for dinner.

[Guest guest]

after 3+ weeks on the 3x elevated dosage of meds, now even the psych is

convinced it is bad for ds, and now we are tapering it down to its original

dosage .

but if it were not enough for ds to deal with, tomorrow , as school starts

after an 8 day-vacation, there is a strike in the local municipality, so: no

personal aide for him, no services in the school (like cleaning, clercks,

etc), nothing that is paid by teh local municipality. (teachers are paid for

by the ministry of ed) , which is to be a nightmare (for those of you who

have been with us at least since last year when tehre was a similar strike

that ended with the worst for my ds)..... oh, how I dreaded this monday,

and now even more !!!!!!!!!!!!!!!!!!!!

Guess where I will be spending my mornings the next few weeks (strikes are

long here).....????

F

[Guest guest]

>>>>>>>>Hang in there, and we'll support you all we can.õ

we know you will, Tammy, thanks !!!!

F

[Guest guest]

<<<<<<<<It's the least I can do with all the support you guys have given me.

Love\Tammy>>>

well, it is midnight here, and I need support for my closing eyelids! lol

I am going to bed. Had a terrible day with ds. at 9am I told him he MUST do

his HW and I witnessed a 4 hour straight outburst..... (that convinced his

psych to reduce med dose, as said before)..... he was about to have another

big one in the afternoon, but I succeeded to prevent it. yes, we mothers are

sometimes at the frontline of the battles, and we are heroes, i really do

believe so......... anyway,

I am exhausted . good night. happy dreams.

F

[Guest guest]

Ugh, what a day. I hope tomorrow is better. Good work in averting the afternoon

one! We moms really are heroes. You did a super job! I hope you are sleeping

and don't get this til morning.

Liz

Uplift wrote:

> <<<<<<<<It's the least I can do with all the support you guys have given me.

> Love\Tammy>>>

>

> well, it is midnight here, and I need support for my closing eyelids! lol

> I am going to bed. Had a terrible day with ds. at 9am I told him he MUST do

> his HW and I witnessed a 4 hour straight outburst..... (that convinced his

> psych to reduce med dose, as said before)..... he was about to have another

> big one in the afternoon, but I succeeded to prevent it. yes, we mothers are

> sometimes at the frontline of the battles, and we are heroes, i really do

> believe so......... anyway,

> I am exhausted . good night. happy dreams.

> F

>

>

>

[Guest guest]

Fania and ,

One thing I have learned mostly from this group is that our kids react to

meds differently than other people, and a tiny amount may have a strong

effect, while a larger amount may do nothing, or make the situation worse. I

wish both of you luck. We are still pretty stable on 60mg of Stratera, and

Nick is doing well in school, but he still has AS, and it isn't a cure...

Hang in there, and we'll support you all we can.

Love

Tammy

[Guest guest]

we know you will, Tammy, thanks !!!!

F

<

It's the least I can do with all the support you guys have given me.

Love\Tammy

[Guest guest]

Yay, Rose!

Sally here and I, too, am amazed when I look back at where I was--could

hardly walk, had to go up and down stairs sideways, could not open my door

at nite, could hardly function and wondered how soon I'd be in a wheelchair

and was suicidal from the pain....

Now, altho I have severe deterioration in both wrists, hands and balls of

feet, and, if I'm careful not to bend or turn my hands suddenly, there is

little swelling and no pain!! I do have to wear my toe straighteners with

accompanying pads on the balls of my feet, (I get those from Dr. Leonard's

catalog. and they have been a Godsend for comfort) but I now walk fast and

most people are amazed there is anything wrong with me. I cannot, however,

walk for a long time, nor use my hands for a long time, due to the

deterioration. Two years ago, people would look at my swollen knuckles on

my hands and say things like: " O, MY GOD!! " or (from my R.N. older sister,

who I love but has a habit of being way too direct) " ARE YOU GOING TO HAVE

TO GET A KNUCKLE REPLACEMENT?! " Yeowchh-hated hearing those kinds of

comments and hated the pain more!!

I was taking Doxycycline at the time (from Dec. '99-Jun '02) because my

rheumy would not switch me to mino. Finally, fired my rheumy and went to

Dr. Mirkin in the DC area (web address: www.drmirkin.com). Got on mino and

zithromax in Jun '02 and by Sept '02 was driving again (couldn't grip the

steering wheel, nor turn the key 1/2 the time and when I could, could not

trust my hands not to flare up on me when I was out!!)

My knuckles are bothering me today and so I may have to take a small dose of

steroids to get me thru the weather change down here in Little Rock! Hate

to do it, but am glad not to be on a chemo or biologic and able to function

again!

Sorry to run on-wanted to say congrats and share my good fortune, too!

Hugs & Good luck!

Sally

rheumatic Update

> I just thought I'd give everyone an update. My SED rate is now 38!

> It was 76! I have been on antibiotics for 7 months now. When I

> started my SED rate was 76 and I couldn't walk, I am now walking and

> it is 38! I'm am so happy! I am crying as I write this because I

> never thought I'd walk again. I am walking slowly, but I feel by

> next summer I'll be moving around faster than ever! Then I'm going

> to visit the doctor that told me this type of treatment was useless.

> I am going to show her! I wish everyone the best of luck and thanks

> for letting me share this with you.

>

> Sincerely,

> Rose

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Dear Rose,

It is so good to hear this kind of news---I think I know how happy and

optimistic you must feel. One question...you said that seven months ago you

couldn't walk, and that triggered a reaction from me because my daughter cannot

walk either. However, she has scleroderma (systemic) PLUS multiple sclerosis,

and it's the MS that is preventing her from walking. But just what is your

medical condition? You didn't say whether it was RA or what it was.

Ellen

rheumatic Update

I just thought I'd give everyone an update. My SED rate is now 38!

It was 76! I have been on antibiotics for 7 months now. When I

started my SED rate was 76 and I couldn't walk, I am now walking and

it is 38! I'm am so happy! I am crying as I write this because I

never thought I'd walk again. I am walking slowly, but I feel by

next summer I'll be moving around faster than ever! Then I'm going

to visit the doctor that told me this type of treatment was useless.

I am going to show her! I wish everyone the best of luck and thanks

for letting me share this with you.

Sincerely,

Rose

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Rose....Way to go!!! Martha

[Guest guest]

a,

good! it seems you are in the right direction with them!

as for teh eval teh school want s to do, tehy can evaluate but cannot

diagnose, they HAVE to accept teh doctors or psychologists's diagnoses.

F

-- ( ) Update

I know I have not been posting much. I've been super busy. I have

read most of the new posts. And I've been thinking of ya. There just

are not enough hours in the day to keep up.

Well I think I have good news to share at long last. My oldest is

being given accomodations and modifications under his current label

of speech. Before now he has had zero official help outside of speech

services. They kept saying speech did not accomodate the things I

kept asking for. So I am frustrated that I had to hire an advocate,

file a State Complaint, and get the school board invloved to get to

this point. Plus they were acting like of course you can have this,

why didn't you ask. UGH! I did ask and I was repeatedly refused. I

need to be happy w/ the fact that he now has this much needed

assistance. It's a step in the right direction. It's alot more

involved though. We are to have another meeting. So far his mods help

w/ handwriting mostly. We still have to address his social deficits

and behaviors next week. They say they can add all that to a BIP

under the label of speech. Then why did we go through Eliginility

last year? I mean it's great that all this can now be accomplished,

but if it's so simple why did we go through over a year of agony

first? And no I did NOT voice that. Also I was told services differed

from everything else. They did not seem to see a need for services.

(my impression) However how else are we going to address the actual

writing process, spelling, grammar, etc deficits? I'm confused.

However I am elated over a few offered mods. He will get keyboarding.

Yippee! That's fantastic in my opinion. Although I'd think this was a

service?? And he will be using a tape recorder for a variety of

things. Two things that hurt my feelings though(and tell me if I'm

being sensitive) was that even after teachers shared how needy

(meltdowns and outbursts) he is and how poor his Language Arts skills

are, they questioned my request to change his label. She was like

why. I tried to explain that he's PDD. And the definition basically

included problems w/ speech and social interaction. And that was what

we spent the entire meeting discussing. Then they asked again about

last year's honor roll grades. This was AFTER I showed several

examples of his work. Um...how can one politely say his grades were

given??? Isn't is obvious? And I so wanted to stay polite. I mean

they are finally agreeing to help. I did not want to ruin that. All

in all I think we are headed in the right direction so I will focus

on that part. Any ideas on how to correlate his issues " w/o a doubt "

to show how they are affecing him academically? To me it's obvious,

but they may NOT have experience w/ a HFA child. Oh that was the

other thing I was taken aback by. She commented that the school would

want their own testing to prove such a disability. Um...I have 2

doctor reports. And the school brought in two doctors. All found

similiar things. We had OCD, PDD-NOS, PDD spectrum, and AS. Plus

three noted ADHD behaviors. Ok I'm stopping now! If you made it this

far thanks a ton!

a