New here...

February 28, 2008

That's fantastic, I try to use natural methods like that as much as

possible, I go to Tai Chi which is helpful too. Sounds like you're doing ok

though. I'm on steroids, (still!) a new drug Tocilizumab (which is helping a

lot) and methotrexate - so keep it up!K.

>

> Hey Kate!

>

> I only take Aleve now. I've gotten to the point where I can meditate and

> get out most of the pain, so I only take Aleve when I have a flare pretty

> much.

>

> I hope I like my mom again soon, lol.

>

> Kirsten

>

> ________________________________

>

> From: Stillsdisease <Stillsdisease%40yahoogroups.com> on

> behalf of Kate

> Sent: Thu 2/28/2008 12:35 PM

> To: Stillsdisease <Stillsdisease%40yahoogroups.com>

> Subject: Re: New Here...

>

> Hi KirstenJust wanted to reply and say hello as I am around your age, i'm

> 23, and i was diagnosed at 15. I too was tested for leukemia but luckily

> was not told I had it! Thats a terrible misdiagnosis. Also just wanted to

> say I empathise with the frustration you feel over your mother being

> over-protective. Mine is exactly the same, and while when i was younger,

> and especially going through University it enraged me, as I have got a

> little older I have become much more tolerant and even appreciative of it.

> You'll probably find that by the time you get through college on your own

> she will see how independent you can be and lay off a little. It's only

> because she loves you so much. Other than that, well done for achieving so

> much despite your stills - I too got through school and University and am

> now training to be a music teacher - I play too, piano and violin. Which

> drugs are you on now? Take care

> Kate (UK)

>

> On 28/02/2008, Kirsten Walters <kwalters@... <kwalters%40cc.edu><mailto:

> kwalters%40cc.edu> > wrote:

> >

> > Hi all!

> >

> > I'm Kirsten.

> >

> > I got sick when I was four, but thought maybe I just had intense

> > allergies, because my mom's allergies are so bad. I missed a lot of

> > Kindergarten, because they didn't like a kid with some strange rash

> coming

> > into a classroom already plagued with childhood sickness. They told me

> that

> > I had Leukemia and six weeks to live right before I turned six. The

> doctors

> > demanded that I be put on chemo right away, but my mom - who had some

> > medical training at the time - knew that I wasn't fully symptomatic of

> > Leukemia and knew that I didn't have it. After about a year of

> researching,

> > we found out on our own that I had Still's Disease, and went to the

> doctors

> > with our prognosis. I saw a great rheumatologist for a while, Dr. Meyer

> in

> > Eugene, Oregon. I don't know if he still practices, but he was always so

> > great with me. My mom pulled me out of school after they made me run a

> few

> > miles for some fundraiser that they knew I was not to participate in.

> >

> > I took naprosyn for a while, but my stomach couldn't handle too much of

> > it. I was also on asthma medicine and fluoride for my still terrible

> teeth.

> > I ended up taking just Aleve when I was about 8 or 9, and that's all

> I've

> > taken since. Though I had insurance up until two years ago, my mother

> > refused to take me due to the grudge she held against the doctors who

> > misdiagnosed me... sadly, that also includes the dentist. I don't have

> poor

> > health, but I am trying to get insurance back so that I can get proper

> > treatment.

> >

> > I went back to school in 8th grade, took all advanced classes in high

> > school, and started college as a sophomore. I moved from the rainy

> Northwest

> > to the snowy Midwest for school, but funny enough my joints are better

> here,

> > even in the -40 degree weather. I have a full ride at Carroll College

> and am

> > majoring in Religious Studies with a minor in History. My family moved

> out

> > here with me, and I don't really get along with my mother very well.

> She's

> > suffering from separation anxiety I think. I am 19 (04-26-1988) so that

> > might be why. She also tries to baby me a lot because of my JRA. I

> continue

> > to fight her tooth and nail about it because I know more of what my body

> can

> > handle.

> >

> > Despite that, I have a great support system in my little sister (who

> > showed symptoms of JRA at 2) and my boyfriend of six months. My step dad

> is

> > a great guy as well, and I just talked to my biological father for the

> first

> > time last month.

> >

> > I work two relatively physically demanding jobs and go to school full

> > time. Somehow I still manage to be online a lot. I enjoy playing video

> > games, because they are a great workout for my fingers. My biggest

> passion

> > though is music - I taught myself piano, and started to write and

> compose

> > songs a few years ago - another great finger workout.

> >

> > Thank you all for taking the time to read my note. I hope you are having

> a

> > good day, hopefully devoid of unneeded and unwanted pain.

> >

> > -Kirsten (KirBir)

>

> .

>

February 28, 2008

Hi Kirsten,

Wow, that's quite a story and I'm so happy you are in school and

active and feeling relativey well, that is AWESOME!

We have another member that recently moved from Seattle to Tennessee.

She is feeling a bit better as well without all the rain.

On another note, I too met my biological father the first time at 19.

If you ever want to talk to someone about it at all, please feel free

to email me a_cone@.... I am now 35 and have some contact with

him but there's a lot of emotions there.

I'm so glad you joined us. You can keep us up on what video games are

cool! I so want to get a WII.

Houston

February 28, 2008

Hi Kirsten,

Wow, that's quite a story and I'm so happy you are in school and

active and feeling relativey well, that is AWESOME!

We have another member that recently moved from Seattle to Tennessee.

She is feeling a bit better as well without all the rain.

On another note, I too met my biological father the first time at 19.

If you ever want to talk to someone about it at all, please feel free

to email me a_cone@.... I am now 35 and have some contact with

him but there's a lot of emotions there.

I'm so glad you joined us. You can keep us up on what video games are

cool! I so want to get a WII.

Houston

July 14, 2008

Hi Lesa,

It is hard for us to accept that our children need to be banded, but

once you get started it is really not as bad as you imagine. Time

flies by, and for the most part you quickly forget it is there. I also

still feel some guilt that I didn't prevent my daughter's misshapen

head, but there is just not enough info out there for us parents. I

asked our doctor about it at 2 mo, and she just said " don't worry

about it " . If she had given me advice about repositioning my

daughter I might have avoided banding. She did very well in her

starband, but her head is not perfect. She had brachy (flat in back)

so still has extra width. But to most people she looks perfect now.

I know it is hard, but you are doing the right thing, and it really

isn't your fault!

-christine

sydney 2.5 yrs starband grad

>

> Hi! My name is Lesa and I am the mother of a beautiful 8 mth old named

> . Sam has had a flat spot on the back of his head for about 3

> mths now and we are now looking into getting him fitted for a helmet. I

> found this group through someone from another group. I have lots of

> questions, concerns, have cried many tears wondering if there was more

> I could've done to help Sam avoid having to go through this. I am a

> single mom so making this decision alone is not easy. Our pedi is

> making arrangements for us to see an ortho in Greenville, SC who

> specializes in the Starband helmet. I hope to be a regular poster on

> here and now I will need lots of hugs and advice to get through this. I

> feel like Sam will need a helmet but am hoping the scans will prove me

> wrong. Thanks for listening.

>

> Lesa

>

August 30, 2008

Welcome! My son wa diagnosed when he was 4 and now he is 7.

Sue

From: allgfcf <allgfcf@...>Subject: ( ) New here... Date: Saturday, August 30, 2008, 5:15 PM

Hi! I just joined this group and wanted to introduce myself. I have a4 yo AS boy. We are still going back and forth with school choices, soI guess I will lurk a little before I post! I'm really glad I foundthis group- its nice to be able to look into what the future may hold,as there seem to be many older children here. Thanks!

August 31, 2008

Welcome,

My son is 5 and was just diagnosed over the summer.

>

> Hi! I just joined this group and wanted to introduce myself. I have a

> 4 yo AS boy. We are still going back and forth with school choices, so

> I guess I will lurk a little before I post! I'm really glad I found

> this group- its nice to be able to look into what the future may hold,

> as there seem to be many older children here.

> Thanks!

>

September 2, 2008

Welcome to the group.

I am sending you this link;

http://www.kidsource.com/Kidsource/content/help.gift.html

The information gives you an overview.

16 years ago, help with my decisions,I read the " Open Letter to

Parents " at the back of a great book, Guiding Your Gifted Child " .

I still recommend it.

Get on the phone and talk with your local school district to find out

the options.

Visit a local homeschool group...usually they gather online and at

local parks. There is probably a local group to investigate.

Consider all your options and make an educated choice.

Luckily, you have time to dig for information.

Most school districts have a homeschool support office/teacher.

What state are you in? Look online for national and state information

on that option if it interests you.

Homeschooling has meant that I did return to my regular job and must

do a lot of my shopping second hand, but our family is satisfied with

the decision for this year We always just look at it one year at a

time. Priorities and options change.

Best wishes.

Hugs,

M.

>

> Hi! I just joined this group and wanted to introduce myself. I have a

> 4 yo AS boy. We are still going back and forth with school choices, so

> I guess I will lurk a little before I post! I'm really glad I found

> this group- its nice to be able to look into what the future may hold,

> as there seem to be many older children here.

> Thanks!

>

September 2, 2008

Hi Connie,

You will collect a lot of information and be more prepared to make

your decisions by typing " kindergarten trouble " into the search box at

our group's homepage. Searching any groups' archives with

various keywords is VERY helpful to me.

Best wishes,

M.

Hi! I just

joined this group and wanted to introduce myself. I have a

> 4 yo AS boy. We are still going back and forth with school choices, so

> I guess I will lurk a little before I post! I'm really glad I found

> this group- its nice to be able to look into what the future may hold,

> as there seem to be many older children here.

> Thanks!

>

September 2, 2008

Welcome connie....

Jan

Jan Rushen

Smile because it is contagious!!!!

From: tjay1302000 <t-jay130@...>Subject: ( ) Re: New here... Date: Tuesday, September 2, 2008, 3:23 PM

Hi Connie,You will collect a lot of information and be more prepared to makeyour decisions by typing "kindergarten trouble" into the search box atour group's homepage. Searching any groups' archives withvarious keywords is VERY helpful to me.Best wishes, M. Hi! I justjoined this group and wanted to introduce myself. I have a> 4 yo AS boy. We are still going back and forth with school choices, so> I guess I will lurk a little before I post! I'm really glad I

found> this group- its nice to be able to look into what the future may hold,> as there seem to be many older children here. > Thanks!>

September 2, 2008

Just wanted to chime in here and say "hiya" to all the moms of little guys. I've got two HFA boys, 4 and 3, and I am going through the whole "correct educational placement" thing right now with the 4 year old. Ugh. And, actually was told by the school system that he was FINE before we got our official dx., at which point the dr. stressed placement into an intensive autism educational program ASAP. Sure, fine my a$$. (Just a little hostility, but I've been dealing with this school system TODAY with other screw-ups, and am at the end of my tether!)I haven't posted recently because it's just been a zoo here, but with things getting situated, 3 of my 4 kids starting school, etc., things have lightened up a bit time-wise and I'm hoping to be a bit more active and contribute a bit more. )Take care,Mina Mina SmolinskiMommy to: 9/25/02 - NT 5/13/04 - HFAOwen 7/1/05 - HFA with HyperlexiaLila 3/3/07 - NT On Sep 2, 2008, at 3:23 PM, tjay1302000 wrote:Hi Connie,You will collect a lot of information and be more prepared to makeyour decisions by typing "kindergarten trouble" into the search box atour group's homepage. Searching any groups' archives withvarious keywords is VERY helpful to me.Best wishes, M. Hi! I justjoined this group and wanted to introduce myself. I have a> 4 yo AS boy. We are still going back and forth with school choices, so> I guess I will lurk a little before I post! I'm really glad I found> this group- its nice to be able to look into what the future may hold,> as there seem to be many older children here. > Thanks!>

November 21, 2008

>

> Hi! My name is Crystie, I was told to come join this group from

> another mom who has a child similar to mine. I am the single mother

> of 2 children, who is 4 years old and has Complete Agenesis

of

> the Corpus Callossum, micropolygyria, external hydro, and has

global

> and developmental delays. I am having such a hard time with him

here

> lately and was told that someone here could help me out. I also

have

> a 18 month old little boy named Aiden who is just the opposite of

> . Very calm cool and collected in everything. Thank you very

> much for letting me be a part of this group.

>

> I had a rough weekend with . This morning, I am in tears

> because I am so tired. Emotionally and Physically. has been

> ignorning everything that has been said to him, he is spitting in

> peoples faces, he is screaming and hitting and kicking...when I

tell

> him to stop he tells me he is trying to but he cant stop. Then he

is

> telling me that his head is hurting him. I think its because he has

> screamed and cried for the last hour before that. I am being mom

and

> dad here, his dad doesnt help me out in any area but playing with

> him (on his visitation days). I am mom and dad to my youngest son

> who is 18 months old now. I get time to myself every once in a

> while...I am just exhausted...I dont know how to disicipline him,

> everything I do does not work, he thinks its a game!

>

> Ex of some things that are happening...

>

> * He will just be sitting there and then all of a sudden he will

> just start screaming or hollering, or saying innappropriate things,

> or he willact very ugly, out of no where.

>

> * He will not use the chew tubes anymore, he is taking his brothers

> paci's, hiding them and then putting them in his mouth and will

BITE

> THEM IN TWO!

>

> * When he gets upset and starts crying he will repeat everything

> over and over and over and over again what he wants, i tell him he

> cannot have something and he will scream, or hit or spit in your

> face.

>

> There is no getting him back...once he is over the ledge its over

> for the next hour at least. I have tried EVERYTHING.....Please give

> me some kind of guidence as I am on my knees and down and I cannot

> get myself back up this time...

>

> Thank you so much for letting me be apart of this group!

>

> Crystie

***Welcome Crystie,

Have you tried removing milk or wheat? This is a good site to look

at: www.gfcfdiet.com. Even removing just dairy,(all) for some kids,

helps a geat deal, better focus, more eye contact, better behavior.

For my son a lot of bad behavior is caused by over growth of yeast or

bacteria. Some natural aniti-fungals are GSE, Olive leaf Extract, Oil

of Oregano, and some enzymes that you would give inbetween meals.

Chewing on things could be low in minerals esp. zinc, could be yeast

or not tolerating a supplement or certain foods. There is also a lot

of good info at: generationrescue.org. Feel free to ask question,

we're here to help!

Sherry

November 21, 2008

Hi Crystie,

I am a single mom here too, and I know what you must be going through.

If you have a medical insurance you could go and see a child

psychologist in your area, they might prescribe some therapy for your

son and it will be covered by the insurance in that case. I was

thinking about doing that for my son, but he is only 3 and I will

probably wait till he is going to be 4 so he understands more. Also

try having him in a group play, or a kids gym class, that will help

too with his anger and energy. Try karateforall.com, they have special

classes for special kids and the guys that teach them are OT

therapists. But definitely try a child psychologist. You can call your

insurance and they'll give you one in your area, or look on their

website and find one in their network.

Joana

November 22, 2008

> telling me that his head is hurting him.

Certain foods, and yeast overgrowth, caused this problem here.

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

> * He will not use the chew tubes anymore,

At my house, most chewing issues like this were caused by food issues

and yeast overgrowth.

Dana

February 25, 2009

Hi Jill,

First, I know how you feel about your dogs, I have 2 cats that I just love to

pieces. I also have 3 grown sons that I usually love to pieces too, if one

could only find a job...but that's another story.

Second, I'd look for another rheumy. Let me get this strait, you were diagnosed

last July and he only had you on NSAIDs, of course it got worse. You need to be

on a DMARD (of which mtx is one) or a biologic or both. I know it's scary but

RA is a progressive disease and you have to fight it aggressively, preferably

from the beginning. Mine came on overnight, literally, when I finally got in to

see the rheumy and was put on mtx with a short course of pred, everything calmed

down considerably. I am managed well today with 3 mtx weekly. I have heard

that stress can bring it on, autoimmunes run in my family, I had the normal

stress of 3 sons in high school/college and one very toxic mother, did that

bring it on, only God knows that one. I live my life that everyone has a cross

to carry, I know the name of mine and I'm thankful it isn't any of the many

other nasty medical things it could be.

Good luck to you, you'll get alot of information from this group.

in PA

[ ] New here...

Hi Group,

I just wanted to introduce myself and ask a few questions. I am

somewhat new to RA and I'm still in the " getting the right drug combo "

phase. At least I hope it is just a phase...

My name is Jill. I am 37 years old and live in NY (long Island). I am

happily married, with no children... but 2 little chihuahuas that are

the lights of my life. I know it sounds pathetic, but I really love my

dogs. Unfortunately, one of my dogs has kidney failure, and while

she's holding on, I know that it is only a matter of time. We give her

daily subQ fluids (a needle inserted into her neck and I release

100mls of a saline type solutions... kinda like doggie dialysis to

clean out her kidney). Anyway, I hear the RA can be flared from

stress, and if that is so, it could be why my RA has gotten worse over

the last 2 months (when she came down with kidney failure). Or... I

could just be getting worse because it is just naturally progressing.

Anyway, I'll back up a little...I was diagnosed with RA this past

July. My rheummy put me on one anti-inflamatory after another with the

hopes that it would put out the fire... but to no avail. It is clearly

getting progressively worse, and I'm not sure if this is a normal rate

of progression or not. But regardless, I AM getting worse. So at my

last appointment the doc decided to bring out the big guns. I was

given the option of mtx or enbrel. I chose mtx. I have been on it now

for 3 weeks. During this time, I continued to get worse. So much so,

that I called him to get some relief (whether that meant a different

NSAID or pred)... because what I was on, was not working. He said that

it can take a month for the mtx to kick in, so he put me on one of

those 5 day packs of pred. I used that once before and it was a god

send. So I was glad to get it again because I needed some relief. So,

now I am done with the pred, but I feel pretty good. Last time I took

pred, it was able to tide me over for a good 5 weeks. I don't think it

is going to last that long this time because it is creeping back a

little quicker... but what are you gonna do? How long did it take you

all on mtx, to start to feel better? I really want it to kick in

before the pred wears off. We'll, see. Also, I am having issues with

the mouth sores that I hear happens from the mtx (oddly enough I was

getting them alot before the mtx, and rheummy thought it could be from

the NSAID I was on, so he switched it... but I'm still getting them

and I think it might have to do with the mtx now... but who knows?)

I've heard that there is a medication to reduce the mouth sores... is

anyone on that and if so, what is it called and does it help? and

please tell me it doesn't cause yet another side effect... like, you

won't get mouth sores but you will wet the bed. These drugs are crazy,

I hate to add another to the darn mix...

Another question... There are 2 people in my family that had RA. My

mom's cousin had it, but it spontaneously went into remission after 18

months. She did move from NY to FL, and is not sure if that had

anything to do with it... but that's one. The other family member is

my grandfather. He had " something " that he refered to as " rheumatism "

back in the day. My mom said he was in his 40's and she remembers him

barely being able to move. He had to stop working, it was so bad. Then

she said he decided to try exercising to loosen up the joints. Within

a few months, it all went away. We are not sure if it was RA, but it

kinda sounds like it (he passed away in 1986). So.... I guess I am

wondering if any of you have similar stories. Are there family members

with RA? Anyone know of people with went into remission? I am

soooooooo praying that it will happen to me (but not counting on it).

Well, this is getting long. Glad I found this group and look forward

to sharing info.

Wishing everyone pain-free days!

Take care,

Jill

February 25, 2009

On Feb 25, 2009, at 1:08 PM, jillczar wrote:

> Also, I am having issues with

> the mouth sores that I hear happens from the mtx (oddly enough I was

> getting them alot before the mtx, and rheummy thought it could be from

> the NSAID I was on, so he switched it... but I'm still getting them

> and I think it might have to do with the mtx now... but who knows?)

Folic acid is what rheumies suggest to prevent some of the bad side

effects of MTX. It is not prescription, but some people who have

severe side effects from the MTX take a prescription strength, the

name of which I can't recall. Hopefully someone will chime in with

that information.

> Are there family members

> with RA? Anyone know of people with went into remission? I am

> soooooooo praying that it will happen to me (but not counting on it).

RA does have a genetic component. My mother's sister had RA, and now

the daughter of another one of her sisters has it, plus a host of

other autoimmune diseases.

Sue

February 25, 2009

Hi Sue:

I take 2 Leucovorin 12 hours after my MTX shot. It is Folic Acid, and

it helps with Nausea too.

Hugs,

Barbara

>

> > Also, I am having issues with

> > the mouth sores that I hear happens from the mtx (oddly enough I was

> > getting them alot before the mtx, and rheummy thought it could be

from

> > the NSAID I was on, so he switched it... but I'm still getting them

> > and I think it might have to do with the mtx now... but who knows?)

>

> Folic acid is what rheumies suggest to prevent some of the bad side

> effects of MTX. It is not prescription, but some people who have

> severe side effects from the MTX take a prescription strength, the

> name of which I can't recall. Hopefully someone will chime in with

> that information.

>

> > Are there family members

> > with RA? Anyone know of people with went into remission? I am

> > soooooooo praying that it will happen to me (but not counting on

it).

>

> RA does have a genetic component. My mother's sister had RA, and now

> the daughter of another one of her sisters has it, plus a host of

> other autoimmune diseases.

>

> Sue

>

February 25, 2009

Hi Sue:

I take 2 Leucovorin 12 hours after my MTX shot. It is Folic Acid, and

it helps with Nausea too.

Hugs,

Barbara

>

> > Also, I am having issues with

> > the mouth sores that I hear happens from the mtx (oddly enough I was

> > getting them alot before the mtx, and rheummy thought it could be

from

> > the NSAID I was on, so he switched it... but I'm still getting them

> > and I think it might have to do with the mtx now... but who knows?)

>

> Folic acid is what rheumies suggest to prevent some of the bad side

> effects of MTX. It is not prescription, but some people who have

> severe side effects from the MTX take a prescription strength, the

> name of which I can't recall. Hopefully someone will chime in with

> that information.

>

> > Are there family members

> > with RA? Anyone know of people with went into remission? I am

> > soooooooo praying that it will happen to me (but not counting on

it).

>

> RA does have a genetic component. My mother's sister had RA, and now

> the daughter of another one of her sisters has it, plus a host of

> other autoimmune diseases.

>

> Sue

>

February 25, 2009

Thanks, Barbara. I was thinking that was the name of it, but wasn't

sure.

Sue

On Feb 25, 2009, at 4:31 PM, Barbara wrote:

>

> Hi Sue:

>

> I take 2 Leucovorin 12 hours after my MTX shot. It is Folic Acid, and

> it helps with Nausea too.

>

February 25, 2009

Sue, Folic Acid is prescription, 1 mg tabs. I take 2-3 mg per day to help me

overcome the aftereffects of MTX. One of my Rummies had me go up to the

limit, 1.2 cc per week and didn't follow with the increase from 1 mg to 5 mg

of Folic Acid. My tongue swelled a lot and it took a while to get that under

control. My tongue is still larger than normal, but the pain is much less.

Dennis in eastexas

On Wed, Feb 25, 2009 at 3:05 PM, marysue <marysue@...> wrote:

> On Feb 25, 2009, at 1:08 PM, jillczar wrote:

>

> > Also, I am having issues with

> > the mouth sores that I hear happens from the mtx (oddly enough I was

> > getting them alot before the mtx, and rheummy thought it could be from

> > the NSAID I was on, so he switched it... but I'm still getting them

> > and I think it might have to do with the mtx now... but who knows?)

>

> Folic acid is what rheumies suggest to prevent some of the bad side

> effects of MTX. It is not prescription, but some people who have

> severe side effects from the MTX take a prescription strength, the

> name of which I can't recall. Hopefully someone will chime in with

> that information.

>

> > Are there family members

> > with RA? Anyone know of people with went into remission? I am

> > soooooooo praying that it will happen to me (but not counting on it).

>

> RA does have a genetic component. My mother's sister had RA, and now

> the daughter of another one of her sisters has it, plus a host of

> other autoimmune diseases.

>

> Sue

>

February 25, 2009

Dennis, do you mean that the 1 mg tablets can only be had by

prescription? Even though I no longer take MTX, I still take folic

acid because the metformin I take for diabetes also depletes folic

acid. I buy OTC folic acid, 400 mcg, and take two a day, plus there's

a little in my multivitamin.

Sue

On Feb 25, 2009, at 6:23 PM, Dennis W wrote:

> Sue, Folic Acid is prescription, 1 mg tabs. I take 2-3 mg per day to

> help me

> overcome the aftereffects of MTX. One of my Rummies had me go up to

> the

> limit, 1.2 cc per week and didn't follow with the increase from 1 mg

> to 5 mg

> of Folic Acid. My tongue swelled a lot and it took a while to get

> that under

> control. My tongue is still larger than normal, but the pain is much

> less.

>

February 25, 2009

My Rheumatologist prescribes 1000 mg a day.

Stan,

Seattle, Rainy.

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