My daughter

[Guest guest]

my daughters name is LOL. Its alright. The

defiance is really horrable and I hope puberty doesnt come ever. I give

her til she is 12 to start slapping me. It sounds like being defiant is

part of the symptoms of autism. I am not alone LOL Charlene

-- Re: my daughter

Charlene, Cheryl sounds like Theresia! She has to have her tv on

from the time she wakes up till she goes to bed. The sassy part too,

she will make " snotty " faces at me when she gets corrected, just

wait till pubery hits....lol

Take care,

--- In Autism_in_Girls@y..., " cheezer " cheezer@s...> they get older. I

do not want to do the puberty thing LOL

Charlene

>

[Guest guest]

Charlene, Sorry about that. I know what you mean by them being

defiant!! Theresia started being that way more so, when she turned

5, & it just gets worse....lol I'm pretty firm with her, not " mean "

to her, but she usually knows when I mean business...lol I hope

things get straightend out for you when it comes to your childrens'

educational needs. Sounds like Colorado wouldn't be the place to

live if you have special needs children!

Take care,

> my daughters name is LOL. Its alright.

The

> defiance is really horrable and I hope puberty doesnt come

ever. I give

> her til she is 12 to start slapping me. It sounds like being

defiant is

> part of the symptoms of autism. I am not alone LOL Charlene

>

> -- Re: my daughter

>

> Charlene, Cheryl sounds like Theresia! She has to have her tv on

> from the time she wakes up till she goes to bed. The sassy part

too,

> she will make " snotty " faces at me when she gets corrected, just

> wait till pubery hits....lol

> Take care,

> --- In Autism_in_Girls@y..., " cheezer " cheezer@s...> they get

older. I

> do not want to do the puberty thing LOL

> Charlene

> >

>

>

[Guest guest]

Hello ? [sorry you didn't say your name]

Seek help from medical staff for a referral to a gastroenterologist. How you do this will depend on where you are. Remember this is an international group and our experiences differ.

Your daughter will need to have the oesophageal manometry testing and possibly other things such as a barium or endoscopy. She needs a diagnosis. None of us can say if its achalasia but the sooner you get her seen by somebody who can tell her the better.

Wishing her well with it all and hope its sorted out soon.

Chris

Plymouth Devon UK

{It helps us all if we know where people are and names make the email a little less formal!}

[Guest guest]

I apologize. I am not used to giving out my name and location.

I am Becky and we are in Texas.

My daughter has since seen a GI doctor. He has scheduled an endoscopy

for Sept. 27th. I told his nurse about my concerns as far as

Achalasia. She assured me she would let him know.

You refered to a oesophageal manometry test, please, what is this and

is it painful? I like to know as much as possible before I request

anything.

Thank you again for your help and support and I apologize again.

> Hello ? [sorry you didn't say your name]

>

> Seek help from medical staff for a referral to a

gastroenterologist. How you

> do this will depend on where you are. Remember this is an

international group

> and our experiences differ.

>

> Your daughter will need to have the oesophageal manometry testing

and

> possibly other things such as a barium or endoscopy. She needs a

diagnosis.

> None of us can say if its achalasia but the sooner you get her seen

by

> somebody who can tell her the better.

>

> Wishing her well with it all and hope its sorted out soon.

> Chris

> Plymouth Devon UK

>

>

>

> {It helps us all if we know where people are and names make the

email a

> little less formal!}

[Guest guest]

Hi,

This is Sandy, reporting back on my daughter 's surgery.

For those of you who do not know me, I have 3 children. is my middle

child, she is 19yo, and is NDA except preciousness. My eldest is , he is

23yo also NDA. My youngest is Kali ( pronounced KAY-LEE ), she has DS & will be

16yo in AUG.

I wasn't going to go into that much detail, except that Kali is standing

right here, dictating to me & making sure that she is not left out of this

email.

LOL

At any rate, had surgery on Wed. (6/18) in Houston, TX ( we live in

Columbus, OH ) on her left wrist. There were 4 major issues that needed to be

addressed/repaired. We are confident in her surgeon's abilities, and that she

has had the best that's available. This is the 2nd surgery in less than a year,

&

very possibly not her last on this wrist depending on how much function she

eventually gets from the repairs that were done. Should these repairs not

afford her the function that she requires & desires, ( is currently in

college, studying nursing.....and dabbling with the possibility of medical

school

) then she would need a total reconstruction. We pray this won't be

necessary........but we are aware of the realities of the damage that she has &

the

difficulty of getting a good repair. will have a very long road to

recovery

ahead of her, with enormous OT with a Cert. Hand Therapist.

*****FOLKS.....please heed this warning::: Make sure you & your children

always wear protective gear (and that it fits correctly, is assembled correctly

&

used correctly) while engaging in any sports!!!!!! As much as this hurts to

say..... is well aware that had she taken that precaution, she wouldn't

be in the position that she's in now......she wouldn't be considering what

alternatives in profession she may have to consider if she can't get this fixed.

She was counseled 24 hrs prior to her injury about how to protect

herself.....and we DO OWN the protective gear :-/

We do not care about if we look " cool " or not. We will be safe instead!!

~~~~~~~~~

Thanks to everyone for the prayers & good thoughts. We do appreciate them

more than you know.

Hugs & Love to all.

Sandy ( & Kali too )

[Guest guest]

Sandy,

Hey. I was thinking about ya all weekend- first of all missing ya at the

suaree- tell cute firefighters, no one to chase after them! Second, i

was

thinking about and all shes been through and hoping your trip to texas

will be worth it in the long run. And third- when are you coming here???????

Or sending Kali????

[Guest guest]

In a message dated 6/26/2003 5:11:07 AM Central Standard Time,

cindysue@... writes:

> Aren't we suppose to meet in NY this fall to celebrate Ally's

> birthday?!?!?!

>

>

Oooh you all give me a date ASAP heehee fall is a great time to travel

And Sandy give a big hug from the clan

Kathy mom to Sara 11 ...... I never hear from my family for visits Aug thru

Dec lol

(^) (^) (^) (^) (^)

,,\)/,,,\)/,,,\)/,,,\)/,,,\)/,,

[Guest guest]

.. And third- when are you coming here???????

Or sending Kali????

Aren't we suppose to meet in NY this fall to celebrate Ally's birthday?!?!?!

[Guest guest]

Yep!

[Guest guest]

I will ask allyson when shes coming- Allyson when are you coming for the big

BD???? And should we be looking in Queens, Manhattan, Brooklyn or LI for a

fabulous restuarant?

Allyson- people are asking better let us know the date!

I can have 4 sleepovers if anyone wants and there is a Marriot Hotel in scary

brooklyn about 10 mins from my house.

But a huge sleep over would be much more fun!

[Guest guest]

Mike Tyson just got into alot of trouble at that hotel. He didnot want to

give an autographer to three people, who where returning from clubbing all

night.

Otherwise it is a beautiful hotel in a very shopper friendly area. No

walmarts. Lol

Maureen

Mom to

9yr nda

3y ds

a 1y

Jillian 3/12/03

[Guest guest]

Maureen,

Now you will scare everyone away for sure!

[Guest guest]

yes you all are

Allyson

[Guest guest]

my birthday is October 16th Kathy. Got to get there to pick a restaurant

now.

Allyson.

Will be getting to JFK sometime after 9.00pm local time after having had

breakfast in London and lunch in Paris

[Guest guest]

what???? no Walmart. Where will I shop?????

[Guest guest]

Corner stores, maybe???

[Guest guest]

, My humble advice is to buy her a book like " Count Us In " or something

with success stories about persons with Down syndrome and mail it to her. If

you need to discuss things further with her, you'll probably know.

Elaine

my daughter

My girls ( 12 and Kayla 15) just came back from visiting my sister-in-law

for a week. As we were leaving the airport, Kayla started telling me how mad

her aunt made her. She said she started talking about (7ds). She said

she would do anything, to change and make him " normal " . And how sad it

was that he would never have a normal life, he would never live on his own,

never get married or have children, etc. From what Kayla said she just went on

and on about it. When I asked Kayla if she told her aunt anything she said no,

she just controlled her temper. She went on to say that she wouldn't change

at all, he was perfect just the way he was, she just loves him so much and

it really made her mad and hurt for to hear her aunt saying these things.

Well, needless to say, that is when my tears started flowing. I told her that I

was very proud of her for feeling that way. That I must be doing something

right if that is how she sees her brother. I also told her that her aunt is

speaking out of ignorance and has no idea what she is talking about and that it

was up to us to help prove her completely wrong.

I am so angry right now. How dare she tell my girls that. I've let a lot of

things slide with her in the past, but she never upset my girls like that

before. I haven't decided if I am going to email her or call her, and I am not

exactly sure what I am going to say. I am going to try and calm down a bit

before I do anything.

Thanks for letting me vent!

, proud mom to Kayla, and

PS. Could someone send me the address for the sibs list, I think Kayla might

be ready to join.

[Guest guest]

My daughter is dia. with systemic JRA last month. Is this common in

JRA Knee pain. She is on medicine but we are new to this and need

help.

[Guest guest]

My 14 year old has had systemic jra for four years. Her pain has always moved around. It might stay in one place for a week or two, but then it moves on. At first she had muscle pain in her legs. We thought she had done something in PE. It is common in systemic to settle into the wrists, at least for a bit. Every morning is a different experience. When we were new to this we would just have to wait for her to wake up to see what kind of condition she was in. Things have settled down since then. We find that rest is very important. Ask any questions you have. There is lots of knowledge here, and we have all been where you are now. (n, 14, systemic)

Re: My Daughter

My daughter is dia. with systemic JRA last month. Is this common in JRA Knee pain. She is on medicine but we are new to this and need help.To leave this mailing list, send request to: -unsubscribe

[Guest guest]

hi my son has excact as your daughter, he is nine, pains move around etc............ what meds is she on? etc what about rash, fever? thanks trishWILLIAM PRICE <bc.price@...> wrote:

My 14 year old has had systemic jra for four years. Her pain has always moved around. It might stay in one place for a week or two, but then it moves on. At first she had muscle pain in her legs. We thought she had done something in PE. It is common in systemic to settle into the wrists, at least for a bit. Every morning is a different experience. When we were new to this we would just have to wait for her to wake up to see what kind of condition she was in. Things have settled down since then. We find that rest is very important. Ask any questions you have. There is lots of knowledge here, and we have all been where you are now. (n, 14, systemic)

Re: My Daughter

My daughter is dia. with systemic JRA last month. Is this common in JRA Knee pain. She is on medicine but we are new to this and need help.To leave this mailing list, send request to: -unsubscribe

[Guest guest]

n had the rash everyday for the first year. It moved around lots. She still gets the rash occasionally, usually when she is sick or overheated. She had the fever at first for about three months. After her initial flare it hasn't been a problem. But this is just n. I know some kids will still get the fever when they flare again. n seems to flare every Dec or Jan, but she doesn't get the fever. She gets really fatigued, black circles under the eyes, enlarged liver and spleen, and then the joints act up big time. After her first flare, each successive one has been less severe. n has had to go on prednisone during two of her flares and we tapered off. It took us 13 months the first time, and nine months the second time. She is now on naprosyn and plaquenil. Be sure to bring your son to the eye doctor. Jra can affect the eyes, though it is rarer with systemic kids. (n, 14, systemic)

Re: My Daughter

My daughter is dia. with systemic JRA last month. Is this common in JRA Knee pain. She is on medicine but we are new to this and need help.To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Yeah me too! its like Jumping beans soup in your joints! bongo bongo bongoRusty Limbs

On Wed, 22 Oct 2003 20:36:45 -0400 (EDT) tisha rowe <tisha_rocks@...> writes:

hi my son has excact as your daughter, he is nine, pains move around etc............ what meds is she on? etc what about rash, fever? thanks trishWILLIAM PRICE <bc.price@...> wrote:

My 14 year old has had systemic jra for four years. Her pain has always moved around. It might stay in one place for a week or two, but then it moves on. At first she had muscle pain in her legs. We thought she had done something in PE. It is common in systemic to settle into the wrists, at least for a bit. Every morning is a different experience. When we were new to this we would just have to wait for her to wake up to see what kind of condition she was in. Things have settled down since then. We find that rest is very important. Ask any questions you have. There is lots of knowledge here, and we have all been where you are now. (n, 14, systemic)

Re: My Daughter

My daughter is dia. with systemic JRA last month. Is this common in JRA Knee pain. She is on medicine but we are new to this and need help.To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi,

My son 's experience has been similar to n's. His arthritis

pain and inflammation tends to move around rather than sticking to

particular areas. Last time we saw the orthopedic doc the first thing he

he asked was how Josh's knees were feeling. Imagine how surprised he

must have been to hear that they've settled down quite a bit and now,

this time around, the pain is mostly in his wrists! Or maybe he wasn't

too surprised, after all. I guess it's pretty typical sometimes.

Aloha,

Georgina

WILLIAM PRICE wrote:

> My 14 year old has had systemic jra for four years. Her pain has always

> moved around. It might stay in one place for a week or two, but then it

> moves on. At first she had muscle pain in her legs. We thought she had

> done something in PE. It is common in systemic to settle into the

> wrists, at least for a bit. Every morning is a different experience.

> When we were new to this we would just have to wait for her to wake up

> to see what kind of condition she was in. Things have settled down

> since then. We find that rest is very important. Ask any questions you

> have. There is lots of knowledge here, and we have all been where you

> are now. (n, 14, systemic)

>

> ----- Original Message -----

> From: nancoolfool_98 <mailto:tsut@...>

>

> My daughter is dia. with systemic JRA last month. Is this common in

> JRA Knee pain. She is on medicine but we are new to this and need

> help.

[Guest guest]

Hi,

My son was diagnosed right before his third b-day.His list of drugs was steroids for 20 months,300mg Ibuprofin am 200mg noon and 300mg pm,25mg Methotrexate subQ 1x week,200mg Plaquenil daily and last but not least 12.5mg Enbrel subQ 2x a week.If there had not been a shortage of Enbrel and a waiting list the drug combo may not have been as much nor the duration so long.Currantly,thanks to the Enbrel he takes 12.5mg Enbrel and 12.5mg Methotrexate orally and is picture perfect and has been since starting the Enbrel Sept.02.He was diagnose June 01.

Systemic disease needs to be treated VERY agressively and as quickly as possible.Another thing that helps if your childs joint problems do not jump around is drainage and steroid injections directly in the joint/joints that the drugs don't help.'s lft ankle was resistant to everything but the Enbrel and moderate doses of steroids. I have a copy from the ortho,who injected his ankle twice stating has Pauci JRA with a refractory lft ankle.What a joke,he had arthur in both wrists,elbows,knees,ankles,multiple fingers,jaw and back it's just the higher the Methotrexate was raised along with atleast 9mg steroids(nothing less)the other joints were quiet and calm.I know his drug regimine sounds kind of scarey but he went from 3 DMARDS,steroids and high doses of an NSAID to just 2 DMARDS with the Methotrexate being tapered every 2 months.In only 13 months his lft ankle was already starting to show sighns of damage,not joint space narrowing but something,the ortho didn't explain and at the time I didn't want to know.

Becki and 5systemic

[Guest guest]

Hi,

My son has had systemic arthritis since May of 1995. He'll be 15 years

old this April. He has had problems you mention with fatigue, off and

on. Lots worse when he is flaring, when he over-exerts himself, or when

he has something else going on (like a cold virus, etc.). He also feels

more generally fatigued every other week, after having his regularly

scheduled dose of Methotrexate. He also has had problems with what they

call anemia of chronic illness off and on throughout the years which can

contribute the the feelings of tiredness. Maybe your daughter, too?

Iron, or iron-rich diet, may be prescribed but may or may not address or

solve the problem. Sometimes my son seems to not have quite as much

energy as other children his age. Other days, since we've finally been

able to get better control of his arthritis, he does feel energetic enough.

A lot of times, when the child's pain and inflammation isn't being

managed well enough, they will find it difficult to sleep well through

the night. A warm bath or shower can sometimes help. I've heard people

say that when they are taking moderate to high doses of daily

prednisone, that they sometimes experience night-mares. My son has been

fortunate in that he has just more vivid dreams and not scary ones.

Though everyone's case is different my son's arthritis has affected his

feet, too. Also in the ankle and heel area, like your daughter. Right

now, though, his arthritis is worse in his wrists. Especially his right

wrist. He will be seeing his rheumatologist in late January and once

again, that will be our main fous. Since last time, instead of getting

better it has worsened. One of the Xmas gifts I bought him is a Paraffin

Wax Bath, for under $50.00. I've been tempted to let him open it early

so he can use it right now, instead of waiting until Xmas. The last time

he saw the occupational therapist they used one and it gave him some

limited relief from the pain he's been experiencing daily.

Has your daughter seen a physical therapist? If not, it might be a good

idea to try to schedule an appt. They can be very helpful with providing

ideas for special exercises that your daughter can learn to do at home,

to help preserve joint function and range of motion in the affected joints.

We have not yet ever tried localized steroid injections. Yet. My son is

one of those among the minority of children with JRA who has been on

long-term oral steroid therapy. He has taken prednisone daily ever since

he first got sick. We never were able to successfully wean him off it

without causing a bad flare up but at this point, we are the closest

we've ever been. He's taking just a very low daily maintenance dose of

2mgs. I thought that once he had been taking Methotrexate for a few

months that he would no longer need it but each time we lowered the dose

his symptoms returned and worsened until we raised the dose again. He

usually had breakthrough pain within a day or two, which is to be

expected, but always within a week or earlier he had return of fevers

and rash and increased joint pain again, even when it had been

controlled for a while before the taper. Also, his arthritis joint pain

migrates to various joints over time. In the past one year it has been

most active and bothersome in, first, his ankle/heel area, then it moved

to both of his knees, and now has returned to his hands/wrists ... where

it had been a couple years earlier. We asked last time about possibly

having an injection done into his wrist and will talk about it more the

next time we see the doctor. It's starting to sound like a good option,

if it helps relieve the pain for a few months at least.

Well, be sure to keep in touch through the JRA list. And I hope your

daughter is feeling a bit better this week.

Aloha,

Georgina

nancoolfool_98 wrote:

>HALLO GEOGINA,

>

>MY DAUGHTER DX WITH SYSTEMIC ONSET JRA THIS SEPT. SHE IS ON

>MEDICATION AND TAPERING OF PRED AND INCREASING MTX... I JUST WANT TO

>KNOW IS IT NORMAL TO HURT FEET OR HEEL IN JRA AND ALSO TIRED ALL THE

>TIME OR SOMETIMES NOT TO SLEEP AT NIGHT.

>

>WHAT ABOUT STERIODS INJECTIONS......WHERE CAN I GET MORE INFO.

>

>IS ANY ONE HAD HEARD ABOUT MACROPHAGE ACTIVATE SYNDROME (MAS)

>THANK YOU,

>

>

>MOM (KRUTI SYSTEMIC ON SET JRA - 15)

>