Re: thanks for the warm welcome Georgina, , Teri,& Diane

January 5, 2001

,

I can see why that story meant something to you, I can see it fits.

I know you will be quite an appreciated addition to this group.

As for skinny, Skyler has the benefit of Prednisolone to avoid that. He has the

moon face and bloating, yet has remained at the same height and weight now for

over 14 months. He gets alot of older ladies who just cant resist pinching

those chubby little cheeks!

We had a problem when he was only 6 months old, he could not keep food down and

was labled as " failure to thrive " . He went from being in the 98% in size for

age down to the 14%. So I suppose it is possible that JRA children can have a

number of growth issues.

Next question?

~

thanks for the warm welcome Georgina, , Teri, & Diane

My name is , I am a working mother of 2 girls, age 6 & 3 1/2. My

3 years old is the one with poliarticular juvenille arthritis. She is

affected in both hands, both Wrists, both knees, and both

ankles. I noticed something funny happinging with her at about

18 months. She cried every single moring for a month. At 19

months in the morning after waking she would cry??? I went in one

morning and while she was lying and crying in her crib. I said hey

Bree get up, Mommy's here. She said " I'm Stuck " . Those 2 words I

will never forget for the rest of my life. I made a doctors appt that

day. I made sure it was a 1st morning appt, because i noticed that

na didn't walk anymore 1st thing in the morning. However by the

time the doctor (who is very young around 32) saw us Bree was moving.

I said there is something wrong with my baby??? I will try to make a

very long story short and within a month we were at Mcmaster (a

childrens hospital in the city) with an appt with an orthapedic

surgen. This specialist spent maybe 3 minute's with na and

walked us down the hall " This child need to see a rhumatoligist right

now. " And so the story goes. We had a very rough year. I took a leave

of absence from work for 6 months. We did phisotherpy everyday (that

nearly broke my heart and to this day I don't know how I did it), we

had hot baths in the morning. We had swimming 3 times a week, we did

gymboree 2 times a week. So much!!!!I have so may stories I can't

possibily tell them all right now. Right now, I am having my light at

the end of the tunnell - we may not be all the way thru the tunnell,

but thats ok. In January 1999 We started with 5ml of motrin 4 x a

day, in March of 99 we added 3mg of methrotrexate 1x a week , in

april 99 we up the methrotrexate to 5ml. and since then we have had a

almost stedy improvment. We went from a sed rate of 63 in july 99 to

a sed rate of 6 in November 2000. I have a child that couldn't

lift her left up a 1 inch step to a child who now jumps off my

couch. I have a child that used to lie on the floor for a rest

who now never stops moving. Things are ok now. and for now. I

take one day at a time. I so wish I would have had a computer

& the internet when Bree was first diagnosed, My need for

knowing there were other parents out there experiencing these

things was so great. I now have a computer and the first ting

I looked for were you. Thank you for the warm welcome. I have a

thousand stories I would like to share & a thousand questions i would

like to ask. My first question is Are all your childen skinny?

My daughter is almost 4 years old and weighs 26 1/2 lbs.

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January 6, 2001

,

is average weight. She is about 30 lbs and is 3 1/2 years old.

Teri

January 6, 2001

In a message dated 1/6/01 1:40:03 AM Eastern Standard Time, ldelibato@...

writes:

> . My first question is Are all your childen skinny?

> My daughter is almost 4 years old and weighs 26 1/2 lbs.

>

When my daughter was first diagnosed she was very thin, couldn't gain weight

for nothing, but at this point, she is 7 now and was diagnosed at 9 months

old she is actually getting heavy. But that of course is the amount of

steroids she is presently taking. So basically with holly its no steroids and

she is thin, when she is on steroids she puts weight on almost immediately.

Glad you joined the list!!!!! AJ

January 6, 2001

welcome to the group and I'm glad you have found us. We will try to

answer your questions. Some might get answered the same day, but if no one

answers in the same day don't get dicouraged because your question will be

answered. My daughter has poly. jra (with psoriatic arthritis newly dxed)

and she stay skinny for a long time and was 30 lbs at the age of 6 yrs., 60

lbs at 9 yrs, and she now weights 100 lbs 4' 10 in now at the age of 10. She

never taken steroids either and mtx was just increased to 10mg. Sohe still

doesn't eat so we're trying to figure out where the weight is coming from at

this but she stayed skinny for a long time and I complained about her being

skinny now I 'm complaining about her weight now that she's made this big

leap. She takes mtx 10mg,vioxx,singulair,topamax,neurontin, & motrin. Sorry

for the venting.

Ywellen

January 6, 2001

Hi . The line in your post that hit me the most

was one of the last ones. I am a JRA'er myself. Was

dx'ed when I was 7 and I'm now 24. I have always

battled being very skinny. To the point of people I

didn't know well asking if I had an eating problem. I

have always had an excellent appetite except when I

flared. (A picky eater but good appetite) During a

flare, I wouldn't each much at all. I still go

through times where I don't eat much. But, when I'm

feeling good, I eat way more than my hubby. Anyway, I

am just now getting to the point of my weight not

being grossly low. I still look tiny but my weight

has increased. Only in the last few years though. In

fact, in the last year, I had gained about 20 lbs and

lost half of it. I now feel like I'm at a good weight

and I look healthy.

Waynette

=====

I'm not under the alkafluence of inkahol that some thinkle peep I am.

__________________________________________________

January 6, 2001

hi linda, my name is brandy and i am 23, was dx'd with sys jra at 5. as to

your question, i was always so tiny that everyone thought i was the teachers

kid. i hope you find what you need here, brandy

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January 8, 2001

Ywellen,

I was reading your daughters meds and am wondering... my son was taken off

of motrin and given vioxx. I was told if he gets a fever (which happens

alot), that I am not to give him motrin. According to the doctor we can not

mix both. I was told to give him tylenol. Has anyone heard anything like

this? While I'm at it I also read somewhere here that you are not to give

folic acid on the day you give your child the methotrexate shot, is this

true? I have one more question... when my son gets his flare ups and ends

up in the hospital, they usually end up giving him a 3 day pulse of

solimetro. We recently started seeing a local reumotologist (for backup,

because his ped. reumy is 2 hours away). He suggested a corti..injection in

the muscle (thigh). He said this will help out in the long run. Has anyone

done this instead of the solimetro and how were the results? Thanks for

listening.

, (Son- Josue 6 years old, systemic jra since 2 1/2)

>From: sweetpea200001@...

>Reply- egroups

> egroups

>Subject: Re: thanks for the warm welcome Georgina, , Teri, &

>Diane

>Date: Sat, 6 Jan 2001 14:58:56 EST

>

> welcome to the group and I'm glad you have found us. We will try to

>answer your questions. Some might get answered the same day, but if no one

>answers in the same day don't get dicouraged because your question will be

>answered. My daughter has poly. jra (with psoriatic arthritis newly dxed)

>and she stay skinny for a long time and was 30 lbs at the age of 6 yrs.,

>60

>lbs at 9 yrs, and she now weights 100 lbs 4' 10 in now at the age of 10.

>She

>never taken steroids either and mtx was just increased to 10mg. Sohe still

>doesn't eat so we're trying to figure out where the weight is coming from

>at

>this but she stayed skinny for a long time and I complained about her being

>skinny now I 'm complaining about her weight now that she's made this big

>leap. She takes mtx 10mg,vioxx,singulair,topamax,neurontin, & motrin. Sorry

>for the venting.

>Ywellen

>

January 8, 2001

, My son is very skinny. He is going to turn 7 years old next month

and weighs 37lbs.

,

>From: THep115@...

>Reply- egroups

> egroups

>Subject: Re: thanks for the warm welcome Georgina, , Teri, &

>Diane

>Date: Sat, 6 Jan 2001 08:48:45 EST

>

>,

> is average weight. She is about 30 lbs and is 3 1/2 years old.

> Teri

>

January 8, 2001

My daughter does not get her folic acid on the day of her metho shot

as per instructions from her ped rheumy

>

> Ywellen,

> I was reading your daughters meds and am wondering... my son was

taken off

> of motrin and given vioxx. I was told if he gets a fever (which

happens

> alot), that I am not to give him motrin. According to the doctor

we can not

> mix both. I was told to give him tylenol. Has anyone heard

anything like

> this? While I'm at it I also read somewhere here that you are not

to give

> folic acid on the day you give your child the methotrexate shot, is

this

> true? I have one more question... when my son gets his flare ups

and ends

> up in the hospital, they usually end up giving him a 3 day pulse of

> solimetro. We recently started seeing a local reumotologist (for

backup,

> because his ped. reumy is 2 hours away). He suggested a

corti..injection in

> the muscle (thigh). He said this will help out in the long run.

Has anyone

> done this instead of the solimetro and how were the results?

Thanks for

> listening.

>

> , (Son- Josue 6 years old, systemic jra since 2 1/2)

>

> >From: sweetpea200001@a...

> >Reply- egroups

> > egroups

> >Subject: Re: thanks for the warm welcome Georgina, ,

Teri, &

> >Diane

> >Date: Sat, 6 Jan 2001 14:58:56 EST

> >

> > welcome to the group and I'm glad you have found us. We

will try to

> >answer your questions. Some might get answered the same day, but

if no one

> >answers in the same day don't get dicouraged because your question

will be

> >answered. My daughter has poly. jra (with psoriatic arthritis

newly dxed)

> >and she stay skinny for a long time and was 30 lbs at the age of

6 yrs.,

> >60

> >lbs at 9 yrs, and she now weights 100 lbs 4' 10 in now at the age

of 10.

> >She

> >never taken steroids either and mtx was just increased to 10mg.

Sohe still

> >doesn't eat so we're trying to figure out where the weight is

coming from

> >at

> >this but she stayed skinny for a long time and I complained about

her being

> >skinny now I 'm complaining about her weight now that she's made

this big

> >leap. She takes mtx 10mg,vioxx,singulair,topamax,neurontin, &

motrin. Sorry

> >for the venting.

> >Ywellen

> >

January 8, 2001

,

I asked the same question you are asking about the motrin/vioxx and the

rheumy said it was ok to take them both. The mtx/folic acid I was told to

give folic everyday and not to skip dose. He said that he's giving her the

best treatment, but I don't know about that. It just happens that he the

closest to me here in Mississippi and he's in Fla.

After her sleep study we'll know where we are going with all this. Thanks for

your concern.

Ywellen

January 9, 2001

Jonnathon gets his folic acid (2mgs) early in the morning on the day of his

mtx, then he gets the mtx just before bed. We haven't had any problems

doing it this way, and the ped. rheumy says its fine.

Donna

Re: thanks for the warm welcome Georgina, ,

> Teri, &

> > >Diane

> > >Date: Sat, 6 Jan 2001 14:58:56 EST

> > >

> > > welcome to the group and I'm glad you have found us. We

> will try to

> > >answer your questions. Some might get answered the same day, but

> if no one

> > >answers in the same day don't get dicouraged because your question

> will be

> > >answered. My daughter has poly. jra (with psoriatic arthritis

> newly dxed)

> > >and she stay skinny for a long time and was 30 lbs at the age of

> 6 yrs.,

> > >60

> > >lbs at 9 yrs, and she now weights 100 lbs 4' 10 in now at the age

> of 10.

> > >She

> > >never taken steroids either and mtx was just increased to 10mg.

> Sohe still

> > >doesn't eat so we're trying to figure out where the weight is

> coming from

> > >at

> > >this but she stayed skinny for a long time and I complained about

> her being

> > >skinny now I 'm complaining about her weight now that she's made

> this big

> > >leap. She takes mtx 10mg,vioxx,singulair,topamax,neurontin, &

> motrin. Sorry

> > >for the venting.

> > >Ywellen

> > >

January 9, 2001

I have also been told no motrin or asprin if you are on Vioxx, because they

are in the same family of medicines. Jonnathon takes tylenol when needed,

and since it doesn't work as well as motrin I just give him a little extra.

Donna

Re: thanks for the warm welcome Georgina, , Teri, & Diane

> ,

> I asked the same question you are asking about the motrin/vioxx and

the

> rheumy said it was ok to take them both. The mtx/folic acid I was told to

> give folic everyday and not to skip dose. He said that he's giving her the

> best treatment, but I don't know about that. It just happens that he the

> closest to me here in Mississippi and he's in Fla.

> After her sleep study we'll know where we are going with all this. Thanks

for

> your concern.

> Ywellen

>

> For links to websites with JRA info please visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

> To manage your subscription settings, visit:

> subscribe/

>

January 9, 2001

Hi :

Yes, my daughter, Mickey, now going on seven, is quite skinny, has never

been able to put much weight on, despite the " moonface " (Cushings syndrome)

caused by the prednisone. She weighs 36 pounds, and is barely on the

percentile scale for height. Skinny skinnny skinny! Her younger sister (by 2

1/2 years) is now a bit taller and 5 pounds heavier than she is. I can

relate to your story, before Mickey was diagnosed (it took a year) she went

from being a happy, constantly active and energetic child to one who slept

all the time, didn't even have the energy to have stories read to her (which

she has always loved), and said her legs just " didn't want to walk anymore,

mommy " . I dragged her into the docs soo often, and was basically regarded as

overprotective and paranoid. She also went through weeks of high fevers

through the night that would always be gone by morning. More skeptical looks

from my family doctor. Then more brush offs from a pediatrician... until I

started taking her into the local emergency room, and was eventually taken

seriously by the woman who is now our family doc. She sent us to a larger

hospital for a week of tests, and we eventually ended up at Toronto Sick

Kids - its the nearest facility with pediatric rhuematologists. It has made

a huge difference, Mickey gets excellent care there. You mention McMaster -

are you in Hamilton? We live in Kincardine. Mickey's arthritits is systemic

onset.

I know you will find in this list the information you crave and the support

you need. Welcome!

Lynn