Re:

March 22, 2005

Hi ,

Thank you for the reply. My diagnosis came last summer as well. I

first got hit on day 1 of a vacation and was down for about 6 weeks.

I had minor flares off and on until January of this year.

Do you continue to have any other symptons?

Thanks,

March 23, 2005

Hi

Ok long story short so as not to bore you with too many details:

My original symptoms were extremely swollen glands in my neck,

wicked evil sore throat, fever of 104+ in the afternoons, sweating

buckets -this weird kinda sweat that had a sweet sugary scent,

nausea, throwing up even when I hadn't eaten in days, and the pain,

oh my god the muscle pain. It felt like I had run a marathon and

didn't stretchout afterwards and then got runover by a bus. I was

bedridden, absolutely couldn't move bcuz the pain and weakness was

so unreal. I have a high tolerance for pain, especially being sore

because I trained in martial arts for years. I was very straong and

I couldn't lift my head. Ok but so other than that I didn't have

joint pain or any arthritis type symptoms. My blood tests came back

with the obscene sed rate and crp rate and all that jazz. But I

never got real specific joint pain until three months or so later. I

was misdiagnosed with just a rare manifestation of RA in august but

I knew that I didn't have just normal RA so I got a 2nd opinion and

that RD knew right away that I had Still's. I had hidden injury in

my foot/ankle from running. The inflamation exaserbated the injury

and for weeks I was on crutches or crawling on my hands n knees to

get around. Yeah, I know, that's hot. But so anyways I went to a

foot doc and he gave me a steroid shot in my ankle and after a while

the pain is only 10-15% of what it was. I responded to treatments

until december and onver the NewYears holiday I had my second

official flare after I had been off of prednisone for a week. It was

too soon apparently and my body let me know it. I was right back to

where I started from. It's not easy to get down to 2.5 mg of pred

when you started at 80mg! Don't mess with anythign that could effect

your lower dose of pred, I swear because it takes forever to get off

the stuff. You might already know that though....ok so I was sick

againin January and I'm still fighting that same flare. I am on 25mg

of MTX injections, Kineret daily injections, 15mg and pred still

dammit, and you know the rest folic acid blah blah...As the months

pass I get more and more of the srthritis symptoms like pain and

swellingin the little joints and my wrists and knees. And on bad

days my bad ankle. I get so tired so fast, but then there are times

when I couldn't sleep if you paid me. I am a workaholic and a super

active person...or ...I WAS that way. I pushed myself to get off

pred too quickly because I didn't believe I really had Still's and

if I did have it I was convinced that it would go away. I truly

believed that it was just going to go away. I only really really

accepted that I actually have this thing a couple weeks ago when I

decided to start Kineret. I know immediately when I'm starting to

get sick because I feel it in my throat. I could guess my sed rate

within one point with almost flawless accuracy. You really get to

listen to your body when you're sick like this. I can eat a tootsi

roll and within 10 mins I feel it in my joints. Sugar seems to be a

trigger for me. And I not a health nut. I should be but I'm all

about hotdogs and icecream sundaes. If I eat salt I will absolutely

gain weight. The worst things I'd say are the pain and the weight

gain. I was thick when I got sick but damn if I'm not a prize

heiffer now! I feel like the farmer is gettin me ready for the

county fair. Blue ribbon here I come. But I'm not annoyed about it

because I'm vain, it's straight up uncomfortable. I hate that stiff

tightskin bloated stretched out feeling. Some days I don't recognize

myself in the mirror. Anyways...wow this is longer than I

intended...long story short-toooooo late- I am slowly learning to

roll with the punches. Some people go into remission and I still

think maybe I might be one of them...I am young healthy and strong,

but there are days when I feel nothing short of old, ill, and weak

as hell. I'm not one to cry but wow has this made me cry. But, this

is where the weird part comes in, I almost don't mind having

Still's. Yeah I know it's nuts. There are so many worse things. I

have to remind myself of that. I mean so my hair's falling out...eh,

I cut it short because I'm cute like that. So what I got fatter,

I can work it. Curves are sexy, yeah? So...I don't know. I don't

have a religious mindset so I can't say that I'm all about giving it

up to God like some people can. I don't find solice in all that. If

you do, then more power to ya, pray on man. But you know what's good

about having Still's? You can get a handicap parkin placard and park

for free in the city (at least you can in Chicago) and you always

get that rock star parking spot. That's the answer. We are all

just secret rockstars. Sorry to ramble.It's an I-can't-sleep-

night. But so now it's your turn. What's your story man? How do you

feel today? What are your meds/symptoms/emotions? I seriously wanna

know.

Love

xoxo

aim =HelloLovah

yahoo=ChillerLovah

email=melissacalabrese@...

March 23, 2005

Hi ,

I hope you are getting some sleep today.

Well I guess I should have kept my big mouth shut!

I'm getting hit pretty hard today. Sore throat, my entire body hurts

and I woke up this morning with a large swollen rash on my side.

First sign of rash in about 3 months.

I will try and reply back later tonight with better detail on my

story later. I am leaving work and going to the doctors for lab work.

Talk to you later,

March 24, 2005

I save up about 10 gallons of milk

well now there it is...I've only used 2 at the most and gotten so very little

Thanks- Jolynn

March 24, 2005

I save up about 10 gallons of milk

well now there it is...I've only used 2 at the most and gotten so very little

Thanks- Jolynn

March 29, 2005

That's amazing. It's totally legal here for people to sell cakes and cookies outside the grocery stores for different causes.

And the roach coaches keep rolling along (LMAO).

K.C.

From Farm Show, vol. 29, No. 2:

Outlawing Potluck Dinners

It is now illegal for churches in some parts of North America to hold potluck dinners. Several states have passed regulations outlawing them, turning church ladies into a new class of criminal.

However, the backlash from hungry church-goers might help turn back the tide of ridiculous regulations. Citizens in Washington state raised such a stink after such community meals were banned, that a new law exempting potlucks from state food safety laws was passed. Potlucks will be legal again this May.

Minnesota also had to pass a law recently to exempt churches and schools from anti-potluck laws.

In Canada, church fundraising potlucks and bake sales are being cancelled across the country, according to recent magazine reports. The issue came to a head last year at the Rosy Rhubarb Festival in Shedden, Ontario, when a person selling pies was told to stop because the kitchen where the pies had been baked had not been inspected by the health authorities. Witnesses reported that the ensuing discussion turned ugly, with pies being hurled at the inspector.

www.MajestyFarm.com

The true danger is when liberty is nibbled away, for expedients, and by parts. Edmund Burke (1729-1797)

PLEASE BE KIND AND TRIM YOUR POSTS WHEN REPLYING!Visit our Raw Dairy Files for a wealth of information!http://groups.yahoo.com/group/RawDairy/files/Archive search: http://onibasu.com

March 29, 2005

That's amazing. It's totally legal here for people to sell cakes and cookies outside the grocery stores for different causes.

And the roach coaches keep rolling along (LMAO).

K.C.

From Farm Show, vol. 29, No. 2:

Outlawing Potluck Dinners

It is now illegal for churches in some parts of North America to hold potluck dinners. Several states have passed regulations outlawing them, turning church ladies into a new class of criminal.

However, the backlash from hungry church-goers might help turn back the tide of ridiculous regulations. Citizens in Washington state raised such a stink after such community meals were banned, that a new law exempting potlucks from state food safety laws was passed. Potlucks will be legal again this May.

Minnesota also had to pass a law recently to exempt churches and schools from anti-potluck laws.

In Canada, church fundraising potlucks and bake sales are being cancelled across the country, according to recent magazine reports. The issue came to a head last year at the Rosy Rhubarb Festival in Shedden, Ontario, when a person selling pies was told to stop because the kitchen where the pies had been baked had not been inspected by the health authorities. Witnesses reported that the ensuing discussion turned ugly, with pies being hurled at the inspector.

www.MajestyFarm.com

The true danger is when liberty is nibbled away, for expedients, and by parts. Edmund Burke (1729-1797)

PLEASE BE KIND AND TRIM YOUR POSTS WHEN REPLYING!Visit our Raw Dairy Files for a wealth of information!http://groups.yahoo.com/group/RawDairy/files/Archive search: http://onibasu.com

March 29, 2005

,

You asked for my story so here you go.

I am 46, married with 4 children. We live in Spring Texas, a

community just north of Houston. I first became sick in June of 04.

My symptoms were severe rash that started on the bottom of my feet

and the palms of my hands. The rash continued to grow daily and

progressed to my trunk. I suffered from severe muscle and joint pain

and a very sore throat. The lymph nodes on the back of my neck became

the size of golf balls. I also would get lumps on the top of my head.

Is that weird or what! I also suffered from severe fatigue. I had

only a low-grade fever at the beginning and really no fever or night

sweats at all since. I was hospitalized and went through tests for

everything imaginable. I saw Internal Medicine, Infectious Disease,

Urologist Cardiologist and Rheumatologist. The Urologist was for a

kidney stone that I was passing at the same time. Glad that went

fast! I started on meds for tick born illnesses while labs were being

completed. After not responding to the meds and negative blood tests

I was started on Prednisone. I was showing some improvement, but I

didn't know if it was the meds or what ever I had just running

its course. I continued on the pred and was diagnosed with AOSD

around December. At the time of the diagnosis my doc started weaning

me off of the pred and started me on methotrexate.

I had been feeling much better with the only problem coming from

doing physical activity. I would swell and get extremely sore for

about a day after doing any kind of physical activity.

At the beginning of March I went back to the doc for a follow up and

we decided coming of the meds. I really wanted to see if the meds

were working or, if what ever I had just ran its course.

Well I am very sad too say that my symptoms returned

last week. I broke out with a rash that was one big spot about

5 " around on my side that was bright red and very swollen. I had

a

sore throat that started the day before and I was extremely sore all

over. I spoke with my doc and back on the pred and methotrexate I go.

I am now taking 20mg of pred daily and 15mg of mtx a week. Since

going back on the meds I have had two other days that I have not felt

well.

I guess that I am finally coming to the realization that Still was

the proper diagnosis. Early on when I was on the meds I would also

suffer from chest pains and being short of breathe. That seemed to

improve as I came off the pred. Now that I am back on it the chest

pains have returned. Is that a side effect of prednisone??? Well I

guess I rambled on long enough but you asked for my story so there it

is. I really did appreciate your reply and I did respond to it last

week but it never showed up in the posts. I'm a rookie to groups

so I must have done something wrong. Anyway I look forward to talking

to you again and I hope you are feeling well.

Thanks for your support.

Yahoo messenger: unkjohn

AIM: Bigerjohn

E-Mail unkjohn@...

>

> Hi

>

> Ok long story short so as not to bore you with too many details:

> My original symptoms were extremely swollen glands in my neck,

> wicked evil sore throat, fever of 104+ in the afternoons, sweating

> buckets -this weird kinda sweat that had a sweet sugary scent,

> nausea, throwing up even when I hadn't eaten in days, and the pain,

> oh my god the muscle pain. It felt like I had run a marathon and

> didn't stretchout afterwards and then got runover by a bus. I was

> bedridden, absolutely couldn't move bcuz the pain and weakness was

> so unreal. I have a high tolerance for pain, especially being sore

> because I trained in martial arts for years. I was very straong and

> I couldn't lift my head. Ok but so other than that I didn't have

> joint pain or any arthritis type symptoms. My blood tests came back

> with the obscene sed rate and crp rate and all that jazz. But I

> never got real specific joint pain until three months or so later.

I

> was misdiagnosed with just a rare manifestation of RA in august but

> I knew that I didn't have just normal RA so I got a 2nd opinion and

> that RD knew right away that I had Still's. I had hidden injury in

> my foot/ankle from running. The inflamation exaserbated the injury

> and for weeks I was on crutches or crawling on my hands n knees to

> get around. Yeah, I know, that's hot. But so anyways I went to a

> foot doc and he gave me a steroid shot in my ankle and after a

while

> the pain is only 10-15% of what it was. I responded to treatments

> until december and onver the NewYears holiday I had my second

> official flare after I had been off of prednisone for a week. It

was

> too soon apparently and my body let me know it. I was right back to

> where I started from. It's not easy to get down to 2.5 mg of pred

> when you started at 80mg! Don't mess with anythign that could

effect

> your lower dose of pred, I swear because it takes forever to get

off

> the stuff. You might already know that though....ok so I was sick

> againin January and I'm still fighting that same flare. I am on

25mg

> of MTX injections, Kineret daily injections, 15mg and pred still

> dammit, and you know the rest folic acid blah blah...As the months

> pass I get more and more of the srthritis symptoms like pain and

> swellingin the little joints and my wrists and knees. And on bad

> days my bad ankle. I get so tired so fast, but then there are times

> when I couldn't sleep if you paid me. I am a workaholic and a super

> active person...or ...I WAS that way. I pushed myself to get off

> pred too quickly because I didn't believe I really had Still's and

> if I did have it I was convinced that it would go away. I truly

> believed that it was just going to go away. I only really really

> accepted that I actually have this thing a couple weeks ago when I

> decided to start Kineret. I know immediately when I'm starting to

> get sick because I feel it in my throat. I could guess my sed rate

> within one point with almost flawless accuracy. You really get to

> listen to your body when you're sick like this. I can eat a tootsi

> roll and within 10 mins I feel it in my joints. Sugar seems to be a

> trigger for me. And I not a health nut. I should be but I'm all

> about hotdogs and icecream sundaes. If I eat salt I will absolutely

> gain weight. The worst things I'd say are the pain and the weight

> gain. I was thick when I got sick but damn if I'm not a prize

> heiffer now! I feel like the farmer is gettin me ready for the

> county fair. Blue ribbon here I come. But I'm not annoyed about it

> because I'm vain, it's straight up uncomfortable. I hate that stiff

> tightskin bloated stretched out feeling. Some days I don't

recognize

> myself in the mirror. Anyways...wow this is longer than I

> intended...long story short-toooooo late- I am slowly learning to

> roll with the punches. Some people go into remission and I still

> think maybe I might be one of them...I am young healthy and strong,

> but there are days when I feel nothing short of old, ill, and weak

> as hell. I'm not one to cry but wow has this made me cry. But, this

> is where the weird part comes in, I almost don't mind having

> Still's. Yeah I know it's nuts. There are so many worse things. I

> have to remind myself of that. I mean so my hair's falling

out...eh,

> I cut it short because I'm cute like that. So what I got fatter,

> I can work it. Curves are sexy, yeah? So...I don't know. I don't

> have a religious mindset so I can't say that I'm all about giving

it

> up to God like some people can. I don't find solice in all that. If

> you do, then more power to ya, pray on man. But you know what's

good

> about having Still's? You can get a handicap parkin placard and

park

> for free in the city (at least you can in Chicago) and you always

> get that rock star parking spot. That's the answer. We are all

> just secret rockstars. Sorry to ramble.It's an I-can't-sleep-

> night. But so now it's your turn. What's your story man? How do you

> feel today? What are your meds/symptoms/emotions? I seriously wanna

> know.

>

> Love

> xoxo

> aim =HelloLovah

> yahoo=ChillerLovah

> email=melissacalabrese@w...

March 30, 2005

Yes, this is true. Our local community hall had to be reinspected because, get this-they didn't have a proper paper towel holder in the bar! (one that holds the paper towels enclosed and hangs on the wall!). And no, we can't have any baked goods at the Christmas craft sale! And we call Canada a free country........

From Farm Show, vol. 29, No. 2:

Outlawing Potluck Dinners

It is now illegal for churches in some parts of North America to hold potluck dinners. Several states have passed regulations outlawing them, turning church ladies into a new class of criminal.

However, the backlash from hungry church-goers might help turn back the tide of ridiculous regulations. Citizens in Washington state raised such a stink after such community meals were banned, that a new law exempting potlucks from state food safety laws was passed. Potlucks will be legal again this May.

Minnesota also had to pass a law recently to exempt churches and schools from anti-potluck laws.

In Canada, church fundraising potlucks and bake sales are being cancelled across the country, according to recent magazine reports. The issue came to a head last year at the Rosy Rhubarb Festival in Shedden, Ontario, when a person selling pies was told to stop because the kitchen where the pies had been baked had not been inspected by the health authorities. Witnesses reported that the ensuing discussion turned ugly, with pies being hurled at the inspector.

March 30, 2005

Yes, this is true. Our local community hall had to be reinspected because, get this-they didn't have a proper paper towel holder in the bar! (one that holds the paper towels enclosed and hangs on the wall!). And no, we can't have any baked goods at the Christmas craft sale! And we call Canada a free country........

From Farm Show, vol. 29, No. 2:

Outlawing Potluck Dinners

It is now illegal for churches in some parts of North America to hold potluck dinners. Several states have passed regulations outlawing them, turning church ladies into a new class of criminal.

However, the backlash from hungry church-goers might help turn back the tide of ridiculous regulations. Citizens in Washington state raised such a stink after such community meals were banned, that a new law exempting potlucks from state food safety laws was passed. Potlucks will be legal again this May.

Minnesota also had to pass a law recently to exempt churches and schools from anti-potluck laws.

In Canada, church fundraising potlucks and bake sales are being cancelled across the country, according to recent magazine reports. The issue came to a head last year at the Rosy Rhubarb Festival in Shedden, Ontario, when a person selling pies was told to stop because the kitchen where the pies had been baked had not been inspected by the health authorities. Witnesses reported that the ensuing discussion turned ugly, with pies being hurled at the inspector.

March 30, 2005

What a fun post - thanks. Needed that. All right everyone - what's good

about having stils???

* we can also park free anywhere in Hollywood FL with a handicap card

* If I don't feel like going to work, my boss NEVER questions it

* I can get people to bring me a soft drink or snack - cuz I have

Stills (bad Carole)

* I don't have to shave my legs nearly as often with mtx

* I look better than I feel most of the time and when I don't look

well, people assume its the stills, not just a bad hair day or whatever!

* ALL THE WONDERFUL PEOPLE ON STILLIGAN'S ISLAND!!!!!

In a message dated 3/29/2005 9:10:12 PM Eastern Standard Time,

unkjohn@... writes:

But you know what's

good

> about having Still's? You can get a handicap parkin placard and

park

> for free in the city (at least you can in Chicago) and you always

> get that rock star parking spot. That's the answer. We are all

> just secret rockstars.

Feel good everybody!

Carole From Hollywood FL

March 30, 2005

Dear ARGC,

Thank you SO much for your post...it brought the tears!!! Today has

been pretty rough so I am really ready for tomorrow. Thank you for

caring so much...I deeply hope you are better. You've been on my mind

quite a bit last night and all day. Please don't despair...its hard in

these times...but we will get through them...I firmly believe that!!!

Talk to you tomorrow.

March 30, 2005

Yes...We WILL make it!!

April 3, 2005

In a message dated 4/3/2005 6:02:03 A.M. Eastern Daylight Time,

tracy.wright@... writes:

i'm not 100% sure she's right but we'll know by whether the fluconazole

makes it go away!

Hi ,

Isn't fluconazole the generic form of Flagyl? If it is, then it will take

care of Candidae. When I was on oral steroids, I got a wicked case of thrush in

my mouth. It was awful. I had it all through my mouth and down my throat,

despite the fact that I rinsed my mouth after using the various inhalers. At

that time I believe it was Serevent that caused the probelm. Anyhow, it was very

painful, not to mention, nasty looking. Flagyl is what was prescribed along

with a prescription to swish and swallow and I was fine within 24 hours.

I hope you get to feeling better.

Much love,

Terry

April 7, 2005

((((((((((((((((((((((((((((((((())))))))))))))))))))))))))))))) you

needed a big hug today. It is a hard thing to deal with at times, but you

learn that having good days and bad days isn't just about having the pain..

Its part of the emotional rollercoaster as well. People who don't go threw

something as bad or life alerting as this just dont get it at all.. If you

ever need to talk, please know that I am always there for you. on Yahoo I

am kellekn.. Its okay to vent, here it is a totally safe place. It is hard

to loose friends because of this disease, I only have one friend that has

been there since we grew up together that has stuck thru this with me. She

has actually learned with me about this illness. My other best friend in

Canada has learned alot about this as well.. If everyone was like them we

would all be blessed. My friend in Canada actually met in Pogo and

was asking him questions, and it totally helped her to understand a lot more

than reading and looking everything up as well. You really learn who your

friends are when you go thru something as horrific as something like this,

as sad as that is it is so true. I have rambled enough. Please know that

we are all here for you and it is totally okay to break down and cry. If

you cry, you are letting the stress out and not letting the dragon get a

better gripe at you.

Love and HUGSSSSSSS

Kelley in Colorado

-- Larry/Marilynn/Patty & Everyone )

I haven't been here in a few days so Im' tryin to catch up. I've got

responces to a

bunch of you all here instead of writing a slew of responces and crowding

the

message board.

First I'd like to thank everyone for all the birthday wishes!!!! It made my

day when I

read them all. I want you all to know that I thank you )

And now for the responces:

Patty, I get a strange " sore " throat too. I have noticed that my throat is

my major

indicator of a flare coming on. I hope yours gets better for you. I have

always been

under the idea that it's from swollen lymph glands. Who knows.

Marilynn, thank you so much for posting those articles about medicine and

abbreviations! I love learning new things like that. I always try to

understand what's

going on with meds because it's so important. When I was in the hospital

last

summer I was given the wrong medicine twice and I was given a second dose of

a

once a day medicine three hours after I took the first. If i hadn't been

aware of my

meds and their proper dosages I would've gotten sicker than a dog. I had to

stand

my ground and actually move to a different room on a different floor because

it was

the same nurse who always gave me the wrong meds. It was uncomfortable and

whatever, but I know how much I'm worth, you know? I wasn't about to let

someone's carelessness endanger me. I get VERY defensive of myself when I'm

sick and I simply don't care what people think.

Larry, that was a really good point about being happy with what we do have.

I try to

think about it whenever I feel like puking from the MTX. I know two people

right now

going through real chemotherapy and I can only imagine how it feels. I mean,

we all

get a taste of it when we're on high MTX doses, but imagine taking 20 times

that

amount! I can sympathize, but unless you have experienced it, you can't

understand

how it must feel.

I do get sad about my mobility. I have been taking it easy trying to allow

my foot to

heal because I had an injury that got exaserbated by the inflamation of

still's It was

90% better and i've been off crutches for months. Then the other day I was

all

excited and I did the eliptical for about ten mins. After ten mins my foot

hurt and I

knew that I was in trouble. The next day confirmed it and I had reinjured my

ankle/

foot. I was so P!$$# & I could've spit nails. But I kept thinking that no

matter what, I

can still walk. If I was in a wheelchair I'd most likely give anything to be

able to

walk, no matter the pain. Who knows. So yeah....you're right. )

Sometimes I think I say that too much though and I fail to validate the

suffereing

that we do go through because " it coul be worse " . So there are two sides to

every

view I suppose. I hold back too much because I don't wanna be THAT GIRL who

complains about being sick when she can still walk and talk and laugh and go

to

school...I feel like Still's is a disease of opposition. The biggest

opposition I'm

fighting right now is to acknowledge the pain I'm in and the sadness I feel

as real

and valid WITHOUT ending up in a deppression and wallowing in self pity. It

s easy

to become comforted by our own self pity (I think) because it's SO HARD for

anyone

else to be sympathetic because our disease is invisible. At least thats how

I feel.

I had a really necessary cry today after I left the doctors office. Its the

first time I

ever cried in front of her though. Oh god I was trying SO hard not to break

down. I

almost was gonna make it through but then she asked me if I was " ok with all

this "

and I just couldn't stop the tears from flowing. I gathered myself quickly

because I

know she was busy. She said all my new symptoms are jsut side effects of all

the

meds. I've been having these horrible dizzy spells and it's hard to breathe,

like i'm

wearing a corset. And I've been getting double vision and my sleep habits

alone are

enough to kill someone. She gave me some sleeping pills that are new and

that

don't interact wth any meds, so we'll see how those work.. They're called

Luna-

something...Anyways I got in my car and started balling. I'm just in one of

those

days where I'm tired of missing out on everything good in life. And Im so

linely since

I lost my friends. I have never been a lonely type person, but lately I have

really felt

the sting of losing my " best friend " back in January. I know I'm better off

without her,

but that doesn't make life any less lonely with out her. It's hard to go

from having

someone to call 24 hours a day and someone who wants to call you 24 hrs a

day

and someone who you know you'll be with on the weekends and you're a team to

absoultely nothing and never hearing from them or seeing them ever again. I

have a

lot of friends but I don't have a best friend and it's a terribly empty

feeling...at least

today it is. Next week I'll proably be back to my old self and happy as a

lark.

ok I've rambled and wandered my way through yet another long winded post....

I do

hope everyone is well. And if you need to cry, I say do it! save yourself

the

frustration that will build up from holding back. I feel at least 50% better

now that I

let that all go. Glass is half full right?

xoxox melissa

July 2, 2005

" Ramble " any time, Gayle--it's all helpful!! And what your wrote reminds me

that it's time for me to stop making excuses about not finishing that book I

started to write so long ago :>)

Blessings,

Theresa

Re:

> posted a long note and rather than repeating it; I thought I would

> just respond.

>

> Hurrah for you, . You have done what most of us are striving for -

> making the world around you more accommodating and taking advantages of

> help wherever it is offered.

July 22, 2005

Thia made me get deja vu... Ella was on nutramigen formula and had a huge

regression at 14 months right after her MMR shot. I can look back and say sure

maybe Ella was autistic at birth, but not that I noticed. She made weird

grunting noises, slept horribly, had bad gas and stomache issues, but that

sounds like a baby to me. It was only after her MMR that I saw other kids

surpass her in developement. Then the eye contact got worse and worse, and she

seemed almost deaf. I cant say what the future holds for Ella, but I know

something changed her...made her condition worse. I know I am doing all I can,

but still I feel like its not enough!

I didnt even drink caffine in my pregnancy, no fish, hardley and fast food, I

was so careful, its so frustrating....When I ponder these things tears just

come...I cant help it. What would she have been like, what could she have been

like, But I love her like this, I love my Ella bella and every little thing she

does is special and unique!

Aimee

Sagginario wrote:

Hi , Thanks so much for your reply. I too want so badly to know why this

has happened to our children. I can see pieces of nna (PDD) in each of

your descriptions but mostly your youngest. She loves Barney and can sing all

of the songs and can learn a song instantly. I began taking her to a mommy and

me when she was 6 mos old. She sang many songs before she said any words which

is why I didn't really think there was a problem. I thought well she can speak

she's just not using her words functionally yet. Finally at age 2 I decided to

get her tested thinking it was a speech delay. They brought up eye contact many

times which I hadn't noticed and some OT muscle tone issues. First time mom,

just thought she was a content baby. We got nna's diagnosis at age 3, one

year ago. I'm still grieving. I could cry on a drop of a dime. My husband

gets teary eyed (usually a tough guy) when telling anyone of her diagnosis and

how tough life is for our beautiful girl. As

she does progress more and more each day she's still living in a world that is

so hard for her. Potty training has been so tough! She'll go on the potty but

so inconsistently. She does not care if she's wet or dirty, doesn't bother her.

As far as the academics that is what Juilanna loves too... numbers, letters,

shapes, now some words. She's getting more and more spontaneous each day but

usually requests or labels of items she sees. She doesn't inquire about the

world around her, like why? or who? questions... She doens't really stim (some

screaming but mostly attention seeking) but is very complusive with certain

things. Such as anything to do with a stick...like a flag, straw, pinwheel,

flower, drumstick, lollipops, even umbrellas.She does play differently with each

and mostly appropriately but can't get passed it if she can't have the item or

has to move on to something different. She loves musical instruments too. When

nna decides she wants something its torture to

get her passed it if she can't have it. She goes to reg preschool with a 1:1

shadow. She went to a spec ed school but I wasn't happy with the setup with no

true models of kids higher functioning. She loves school only thing is how to

approach and keep a friend without conversation and her complusive issues.

Shadow helps a lot. She also gets home ABA daily, speech and OT. My youngest

daugther is 14 months old. I pray each day for her and for me. She is very

social with saying " hi " to everyone she sees and " byebye. " Her eye contact is

good but that's hard to judge b/c nna's eye contact was good with people

she was familiar with. She does say several functional words thank god. She

seems to be sponging right now and can repeat a lot of what we say and teach

her. I've been teaching her to say, " What's that? " as she says, " Whassdat? " I

sometimes wonder if she's devolping typically or is it just b/c I work with her.

Everytime I give her a snack I am constantly saying,

" more, more " before giving her more. Now she says, " mo. " But is that just

typical or me doing an early ABA program??? Who knows!! What shot did you give

your dd at 15 months that you regret? We have not given the MMR shot yet.

Anyway thanks for letting me babble to you... Take care and keep in touch.

Jen teach413@...

Re: Re: Allie at VBS

In a message dated 7/20/2005 10:44:25 PM Central Daylight Time,

teach413@... writes:

, I noticed you wrote that two of your daughter's have PDD and one has

autism. My dd is 4 and her diagnosis was PDD also. How are your three

daugther's different as far as to make the difference in the diagnosis? What

age did

your youngest get diagnosised? My one year old in my eyes

Hi Jen,

My son, Hayden, was diagnosed at age 2.5yrs. I was then pregnant with my

youngest, Savannah. He stimmed a lot...had no language...many sensory issues,

etc....after 2 yrs of aba he is now going into a typical kindergarten (he did

great in a typical preschool and awful at the ECSE preschool thru the school

district)...Reagan is 3.5 yrs...she is severe...she was diagnosed with PDD but

the pediatric neuro changed her diagnosis to autism just last month after her

1

year follow up with him....she has no spontaneous language, although she is

now repeating some words and i did " catch " her singing itsy bitsy spider the

other day...she is a very controlling child and has been our toughest one by

far

with behavior issues...she stims A LOT...she is just now starting to make eye

contact...she's more in her own world than my son ever was...oh, a side note,

my son was always very social and still is...he LOVES playing with other

kids...he's just not always sure how to initiate or respond

appropriately....ok,

then there is savannah, my youngest...i KNEW in my heart she wasn't

autistic...two pediatricians, therapists, even my ABA consultant said there is

NO WAY this

child is autistic (this was when she was age 12 months-15 months)....she was

very typical...and like i said, as her mom, i JUST KNEW she wasn't...at her 15

month well baby visit i told the ped i was getting nervous b/c she wasn't

saying any real true words...ped said it could be b/c her older siblings

didn't

have language and that her sister would push her away b/c reagan doesn't like

much physical contact...so she suggested i send her to mother's day out 2 days

a week...so i did....and STUPID me allowed her to get one shot at this well

visit exam....2 weeks later, she was staring at the clock and temperature

display in my car and would do so immediately when i put her in her car

seat...i can

still remember the day as if it happened yesterday...as soon as i saw her

gaze fix on those numbers and i could not get her to respond to me when i

called

her name, i ran in the house and threw up....MY WORST nightmare came true...i

knew at that very moment she too had autism...2 days later she was diagnosed

PDD...savannah can sing EVERY barney song from beginning to end...if she hears

a song only once, she's got it memorized...she is FIXATED on

counting...forward, backward, any time, any where...she LOVES to dance...yet

she will come up

to me and say " open " when she wants picked up...she knows her colors, animals,

their sounds, all shapes, etc...it's amazing...yet when i ask her where's

mommy, she still points to herself...she's not as lovey as my other kids and

doesn't like being tickled like my other 2 kids...she's so " different " than

what my

older 2 kids were at 2 yrs...another side note, i did my own little case

study on mercury...since my oldest was diagnosed when i was pregnant, i had my

OB

order a mercury free Rhogam shot, i didn't breastfeed her, we gave her only

nutramigen formula, no shots til she was 6 months old and only then she got

one

every 8 weeks...everytime i was going to get her a shot she was sick or

something came up, so she's only had 3 immuniz. her entire life...i ate no

tuna fish

while i was pregnant with her...and out of all 3 of my kids, she is my least

severe at this age...i have no idea what she will be like a year from now, and

even though my son has made HUGE gains, at 2 he couldn't say a word,

etc....hubby (who is an MD) and i (an RN) are just now looking into the whole

mercury/autism connection...we're having their hair tested this week...and

we're

really not sure where to go with all of this...there is NO family history on

either

side of autism/aspergers/ even quirky family members...we're STUNNED this

happend 3 times to us...the pediatric geneticist was even baffled that all 3

of

our kids are affected and that 2 of them are girls...leave it to my family to

beat the odds huh??? sorry this got so long-winded...any other questions,

just

ask...i'm more than happy to share whatever i can...especially knowing it

might help another...but i am in no way wanting to scare u...i know SO MANY

families that have just one child with autism and then have other children

that are

" typical " ...i actually only know of one other family personally, that both

kids are affected (one boy, one girl)...but other than that, like i said, all

others i know only have one child with autism...I'D GIVE ANYTHING to find out

why this happened to all 3 of our kids...i am still grieving over all of

this...to get 3 diagnoses in under 2 yrs has been overwhelming to say the

least...and

caring for 3 kids with this disorder under the age of 5 is anything less than

pure chaos....but I LOVE THEM TO DEATH!!!!

July 22, 2005