New Member

[Guest guest]

Hi Jayne

Welcome to the group. Glad to have you with us.

Tracey

mayknmuzik@... wrote:

> Hi ,

>

> My name is Jayne, and I am also a new member to this list.

>

> I have a 3 year old girl who is on the spectrum and also has

> underlying

> mitochondrial disease. I also have a 5 year old and two teenage sons.

>

> I look forward to talking with everyone here.

>

> Jayne Nelsen

>

>

>

[Guest guest]

> Glad your aboard. Wished you were locally for me! I have 3

> biological children two autistic. My oldest girl and my youngest son

> autistic.

>

Hi,

The internet kind of makes everybody local who is in that lucky 5

percent that has internet. Sorry for the delayed response. I got hung

up with my diet consults and couldn't check the list again until now.

[Guest guest]

> Hi ,

>

> My name is Jayne, and I am also a new member to this list.

>

> I have a 3 year old girl who is on the spectrum and also has underlying

> mitochondrial disease. I also have a 5 year old and two teenage sons.

>

> I look forward to talking with everyone here.

>

> Jayne Nelsen

Hi Jayne,

Lombard wrote a paper suggesting that autism is a mitochondrial disorder.

Med Hypotheses 1998 Jun;50(6):497-500

Autism: a mitochondrial disorder?

Lombard J.

[Guest guest]

> - welcome to the list! You news about your daughter is

wonderful to

> hear. Are you familiar with Dr Kane of BodyBio?

Hi,

Yes I am familiar with P Kane. Hang in there looks like your doing

pretty well. I prefer DMG to TMG. TMG is betaine. When choline is

converted to betaine then the choline is not avilable. Most diets no

matter how restricted have a source of choline:

Banana, apple, casuliflower, buter, peanut butter, beef to name some.

The symptoms of choline conversion to betaine with inadequate

acetylcholine precursors can include increased thirst and profuse

sweating. Thus I like the DMG usually. Natural diet sources of DMG are

much fewer (brown rice, yam and black walnut). Black walnut in some

ways acts like a natural medicine and should not be eaten too much.

[Guest guest]

Still's disease Mailing list Request

Name: Brent

Email: Kisada1@...

Birthdate: 6-4-79

Location: central Florida

How long have you been diagnosed: 4 years

What meds do you currently take: none currently, waiting to get approved for

remicade

Employment (if any):

Family Life: im am a college student i have lived in florida almost a year,

in the last three months i started haveing flare ups of my stills, i was on

methontrxate which seemed to work for a while, but then all the joint pain

and bad rash returned, it has caused me to leae my job on medical leave,

because i started to miss work.

Hobbies: i enjoy collecting DvDs, reading books

[Guest guest]

hello Eddy,

nice to meet you. Im from Spain, lm 30 years old; l have seen your

photografies, nice. A question: Can you work? How is your independent

living?? Here in Spain dont exist inedpendent living programs for great

disabilities, and we are obligated to live for ever with our parends or in

instituticions ; we cant create a family

regards

New member

> Hi guys,

>

> I am already reading this group for a while but I never posted a message.

> First I would like to introduce myself. My name is Eddy and I live in

Holland.

> I have SMA type III. I am living together with my girlfriend and god

blessed

> us with a beautiful baby boy last october. I will also post some pictures

so

> you can imagne a face with a name :-)

> If somebody would like to see my family album, they can see it here :

> http://photos./eddy_thailand

>

> Eddy

>

>

>

[Guest guest]

>but they haven't

>>had them professionally evaluated because they don't want another

>>label put on them. What are your thoughts on this? Any information

>>would be greatly appreciated. Thank you.

Welcome, No wanting another label is not even an issue for us. With the

autism label JJ could get speech 5 times a week, sensory intergration at

school. In other services we get behavior management and extra respite.

I am sure some one will send the site for an article that appeared in

Disabliity Solutions about DS/autism. I can't find it right this minute.

Agin, welcome,

& Garry, parents of (11 ds), (10 ds), JJ (8

ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (5 ds). All adopted.

------

[Guest guest]

Hi Sue,

My son was just diagnosed in May so take this for what it is worth since I

am new to the DS/ASD diagnosis. I tend to believe that if you don't have

him diagnosed you are missing out on some pretty valuable services that he

could be receiving. Also we were doing tons for Tim before the DS

diagnosis but then after found out we were kind of missing the mark on the

type of programming that he really needed. There are differences in the

programming for DS vs autism, we are finding and his summer programming

which was much more geared toward autism seems to already be getting some

slight results. We even had his devel ped who diagnosed him write a letter

stating the new diagnosis and took it with us to his IEP.

Good Luck with him....sounds like the little guy has had a rough road already

Mom to twins Teddy and Timmy(DS/ASD) 4 1/2 and 3

At 11:54 PM 7/28/02 +0000, you wrote:

>Hello everybody,

>I'm new to the list and wanted to introduce myself and my son

>Everett. Everett is 5 years old and has ds. He also had a congenital

>heart defect (AVSD) which was repaired when he was 6 months old. At 2

>1/2 years, he was diagnosed with leukemia. After 8 months of chemo,

>he went into remission and has been in remission for almost 3 years

>now! My husband and I suspect Everett has PDD/ASD, but have not had

>him professionally evaluated as yet. Can someone tell me what the

>signs are for PDD/ASD. I've had some parents whose kids have PDD/ASD

>tell me that they know their children have PDD/ASD but they haven't

>had them professionally evaluated because they don't want another

>label put on them. What are your thoughts on this? Any information

>would be greatly appreciated. Thank you.

>

>Sue

>mom to Carla (23 yo) and Everett-5 yrs/ds/repaired AVSD/AAI/in

>remission from leukemia

>

>

>

>

>

[Guest guest]

Welcome Sue,

I'm Gail, Mom to Seth. We were lucky with getting his dx at age 2. In our

case we are doing some trial and error situations here, but getting the dx

has generated much more support than just the ds did. Keep posting

questions, and some answers for us too so we can get to know you better.

Gail :-)

Gail-Mom to Seth 6 ds/asd/pica, jo 9 the gymnast, 11 the pianist,

25 beautiful but a pain, Jen 26 the wallet breaker, Grandma to Errick 6

ALL boy and wife to , my hero.

[Guest guest]

Welcome!! My oldest is soon to be 11yrs and was

dx with atuism around 4yrs of age, we wernt looking

for it, had no idea, were just looking for help and

answers to all his behaviors so much unlike his ds

peers behaviorly and developmently. behaviors

included self injurious behaviors such as head

banging, and biting himself, posture simulation or

stereotopy which continues to scratch up his neck and

torso. Disruptive behaviors such as unwilling to

transition from one activity to another , hitting

biting, spitting, wet noodle, yelling out, breaking

furninture etc. He was also nonverbal except for

extremem echolalia (did start talking over the last

year), uummm continues to self stim with dangly

objects especially shoe strings or beanie toys, lines

up toys, is repetetive, many sensory issues, use to

never make eye contact with anyone but is much better,

and can handle groups of people pretty good now too

with out horrible behaviors, and trying to leave every

second. He still occasionally wanders off, but is

starting to answer us about 30% of the t ime when we

call for him. Still often goes through bouts of

insomnia, still rewinds his videos over and over and

over lol eventhoug only watches a few minutes of he

likes to listen to them and echo them. some things h

ave gotten better with time, behavior management, and

medications others worse, some things new just

remember its like any disease, diabetes for example,

always need to monitor and treat accordingly as things

arrise or disappear. shawna, mom to nathan almost 11

w/ds, autism, add/hd, ocd etc, and nicholas 9yrs

w/ld/dislexia? anxiety disorder, depression

--- suehodge2002 <suehodge2002@...> wrote:

> Hello everybody,

> I'm new to the list and wanted to introduce myself

> and my son

> Everett. Everett is 5 years old and has ds. He also

> had a congenital

> heart defect (AVSD) which was repaired when he was 6

> months old. At 2

> 1/2 years, he was diagnosed with leukemia. After 8

> months of chemo,

> he went into remission and has been in remission for

> almost 3 years

> now! My husband and I suspect Everett has PDD/ASD,

> but have not had

> him professionally evaluated as yet. Can someone

> tell me what the

> signs are for PDD/ASD. I've had some parents whose

> kids have PDD/ASD

> tell me that they know their children have PDD/ASD

> but they haven't

> had them professionally evaluated because they don't

> want another

> label put on them. What are your thoughts on this?

> Any information

> would be greatly appreciated. Thank you.

>

> Sue

> mom to Carla (23 yo) and Everett-5 yrs/ds/repaired

> AVSD/AAI/in

> remission from leukemia

>

>

>

>

>

[Guest guest]

I am beginning a flare up. I have no doctor in my area that

understands the disease. The only thing they give me is prednisone. Any

suggestions?

Are you sure you are not me? ;-) You have my name and my circumstances!

Prednisone was my drug of choice for more than 10 years until I got diabetes.

I'm sure you will get some good answers here. I, too, am trying to figure out

what to take next.

(wsm311@...)

Peace and Carrots Farm

Vermont

http://www.homestead.com/peaceandcarrots/

http://peaceandcarrots.homestead.com/sHikingPics.html

[Guest guest]

Hi ,

Sue gave you a lot of good suggestions. I

lived with " the dragon " (Stills DIsease) for

many years before I was given a correct

diagnosis. Although I see a rheumy who

diagnosed me as having Stills about 1987,

he does not really know how to treat this

disease. There are some new meds on the

market that work very well (for some) and

the patient should have the right to try these

meds. if they choose to do so.

Do you see a Rhuematolgist?? How many

mgs. of prednisone are you on daily??

Copying some info about Stills from the site

would be a good idea, and give it to your

doctor to read.

You probably need to be on another med.

What do you take for pain???

~~tricia~~

-- new member

I am new to this group. I am getting around 10 emails a day that appear to

be answers to questions posed. Where are the questions? How does this site

work? I am beginning a flare up. I have no doctor in my area that

understands the disease. The only thing they give me is prednisone. Any

suggestions?

[Guest guest]

I take 60 mg prednisone, tapered down to 20mg then start the cycle all over

again. Zyrtex for the itchy rash, tylenol for arthuritus for pain.

[Guest guest]

Dear ,

I really hope you can find a good Doc. I think having a good Doc. is very

important but unfortunately can be hard to find. I hope with all of the

suggestions people made that you will be able to find a good Doc. soon. I

myself don't have that great of a Doc. In fact I will be looking for a Doc.

that is out of my state soon.

However I was extremely lucky to have some wonderful Doc's for the first

9-10 years of my illness. I have only realized how good they were after

having a few Doc's that I am not happy with. Believe me I know now it made

a world of difference. I am sure I would be so much worse off if I wouldn't

have had the great Doctors that I did.

I live in AK and it seems like this state is definitely lacking in really

good specialists. I agree with others that your Doc. should be trying you

on some other meds and then hopefully you could slowly taper off the

Prednisone. Of course this is just my opinion. I will be praying that both

of us will be able to find good Doc's soon.

Love,

jatw@...

[Guest guest]

Welcome, . I am a fairly new member myself. I see that you also have

your hands full. Welcome to this list.

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall

Evan - nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Depakote, Adderall

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

[Guest guest]

Welcome to the group.

I think you will find the group helpful. We have 3 children and each of them

have their issues. Our most challenging is Brady. He just turned 12 and is

turning on the hormones. Grrrrr!!!!! He has always from birth been a very

difficult child. it is now really becoming almost to much for us at times.

Medicines have been no help in his case. But more later. Great to have you

here. And tell us more about your 2 boys. Have a great day!!!

Hugs - Christiane Mom to:

ph (23) ADD, BI-POLAR

Brady (12) PDD/NOS, ADHD

Libby (7) ADHD

[Guest guest]

Dear Leanne,

It is nice to meet you. I am glad you wrote to the group. I can't answer

your questions but I wanted to welcome you to the group.

Again Welcome,

jatw@...

[Guest guest]

Leanne, I know there are some other here who have had endometrosis. Not

sure if I have it or not, the only symptom I have is infertility and the

stomach crampin and pain and diarrhea during my period, when I ovulate and a

week later when my progesterone level increases. My fertility specialist

said the only way to diagnose it for sure is to have laprscopy surgery which

is kind of invasive and I really dont want to do that. Especially since I

dont have any other symptoms and there could be many reasons for the

infertility and the stomach problmes. How did they diagnose yours?

GO DAWGS !!!!!

[Guest guest]

Hi Leanne, how are you? Just wondered where abouts in the UK you are from.

I am from Hartlepool near Middlesbrough, but at the moment im at Liverpool

University. Im enjoying it here a lot! Hope to hear from you,

Kate

x Kate x

>From: " robinandleanne " Reply-Stillsdisease Subject:

> New member Date: Sat, 28 Sep 2002 16:56:40 +0100

>

>Hello

>

>My name is Leanne and although I have been on the mailing list for a year

>or so, and reading all your posts this is th first time I have sent a

>message.

>

>I am 26, live in the UK and have been diagnosed with Stills disease for 2

>years. I am currently taking only Azathioprine having managed to get off

>steriods earlier this year. To begin things were bad, but I am coping OK at

>the minute, as you know it changes day to day.

>

>I was really interested to read the article about Endometrosis, as I

>suffered from this quite badly in my teens and up until the age of 21. Had

>a couple of proceedures to laser it away and loads of different drugs which

>seem to have stopped it for the minute. I would be interested to know if

>others on the mailing list have also suffered with it, there are so many

>things we do not know about and possible links.

>

>Also on a completely different subject, we are doing a car treasure hunt,

>with friends on 5 October in Lincoln to raise money for Stills disease,

>stupid question but not sure how to get the money to you, should I write a

>cheque for pounds and send it to you, or put it in dollars?

>

>Anyway it is great to have this group, I have learnt far more here than

>through my Rhumey, he is always so busy it is hard to ask lots of

>questions, so thanks.

>

>Leanne

>

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

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[Guest guest]

Hi Leanne,

Welcome to the group. I am new also, only about a month, but I have leaned

so much by reading all the email from everyone. I am sorry I can’t help you

with the endometrosis problem. Iam sure there is someone here that will.

Just wanted to say Hi and welcome

Nettie

New member

Hello

My name is Leanne and although I have been on the mailing list for a year or

so, and reading all your posts this is th first time I have sent a message.

I am 26, live in the UK and have been diagnosed with Stills disease for 2

years. I am currently taking only Azathioprine having managed to get off

steriods earlier this year. To begin things were bad, but I am coping OK at

the minute, as you know it changes day to day.

I was really interested to read the article about Endometrosis, as I

suffered from this quite badly in my teens and up until the age of 21. Had a

couple of proceedures to laser it away and loads of different drugs which

seem to have stopped it for the minute. I would be interested to know if

others on the mailing list have also suffered with it, there are so many

things we do not know about and possible links.

Also on a completely different subject, we are doing a car treasure hunt,

with friends on 5 October in Lincoln to raise money for Stills disease,

stupid question but not sure how to get the money to you, should I write a

cheque for pounds and send it to you, or put it in dollars?

Anyway it is great to have this group, I have learnt far more here than

through my Rhumey, he is always so busy it is hard to ask lots of questions,

so thanks.

Leanne

[Guest guest]

Hi Leanne,

Welcome to the group. I am new also, only about a month, but I have leaned

so much by reading all the email from everyone. I am sorry I can’t help you

with the endometrosis problem. Iam sure there is someone here that will.

Just wanted to say Hi and welcome

Nettie

New member

Hello

My name is Leanne and although I have been on the mailing list for a year or

so, and reading all your posts this is th first time I have sent a message.

I am 26, live in the UK and have been diagnosed with Stills disease for 2

years. I am currently taking only Azathioprine having managed to get off

steriods earlier this year. To begin things were bad, but I am coping OK at

the minute, as you know it changes day to day.

I was really interested to read the article about Endometrosis, as I

suffered from this quite badly in my teens and up until the age of 21. Had a

couple of proceedures to laser it away and loads of different drugs which

seem to have stopped it for the minute. I would be interested to know if

others on the mailing list have also suffered with it, there are so many

things we do not know about and possible links.

Also on a completely different subject, we are doing a car treasure hunt,

with friends on 5 October in Lincoln to raise money for Stills disease,

stupid question but not sure how to get the money to you, should I write a

cheque for pounds and send it to you, or put it in dollars?

Anyway it is great to have this group, I have learnt far more here than

through my Rhumey, he is always so busy it is hard to ask lots of questions,

so thanks.

Leanne

[Guest guest]

Welcome to the group, Lindy! You will meet alot of friendly, knowledgeable

people here as well as newbies like me.

I checked out your site, very nice!

Sincerely,

New Member

> Hello There Folks!

> I am a new member and I wanted to tell you that I am excited to be a part

of your group. I am sure that I can learn a lot from you!

> I just saw a post about pumpkin soap. That is my very favorite scent!

Where can I find this unique person who created this?

> I look forward to talking with you all!

> Sincerely,

> Lindy

> Waskom, TX

>

> Lindy Sellers

> www.sistergoldenhairsoap.com

[Guest guest]

Welcome Lindy------this group is fantastic-----you will learn so much in

here as I have~the ladies here are the best!! Welcome again~*hugs*

Misty

[Guest guest]

Hi Misty & and all others,

Thank you for the sweet welcome and the nice compliments about my site!

I am excited because you all seem to be so enthusiastic about this!

I am going to try the kosher salt that you suggested Misty. I have a jar of

salt scrub that was a gift, purchased from a Body Shop. Looking at the jar it

is 3/4 filled with Salt and then the rest is oils. That is what I am trying to

copy. When I use it, it leaves those oils on my skin and then I just towel off

and I have such a nice glow!

I saw a post from and you said that you canned 50 jars of tuna! Wow!

That is something. You must live near the sea. Sounds like your larder will be

stocked for the winter.

Once again, thank you for the answer to my questions and your kindness,

Sincerely,

Lindy

East Texas

Re: New Member

Welcome Lindy------this group is fantastic-----you will learn so much in

here as I have~the ladies here are the best!! Welcome again~*hugs*

Misty

[Guest guest]

Lindy Glad you are enjoying the list. I am sure you will find lots of good

information here. No we don't live close to the sea. I have to drive 6

hours round trip to get the tuna. I did 50 lbs but it went into 8 dozen

jars. Took me three days to get it all done. This year I had it all

filleted so I wouldn't have to clean the fish myself. It is a big job but I

love canned tuna.

Chris

Re: New Member

>

>

> Welcome Lindy------this group is fantastic-----you will learn so much in

> here as I have~the ladies here are the best!! Welcome again~*hugs*

> Misty

>

>

>

>