Need to vent

[Guest guest]

,isnt it amazing how strong are kids are.We try to protect them,and they

try to protect us.When s having bad times I usually keep my fealings

bottled up until they come pouring out. will come to me and put his little

hand on my arm or pat my head and say dont cry mommy,I will be ok.Please dont be

sad.s to little to know what hes missing out on,but everyone always said he

was built like a linebacker,even knowing he has arthritis they still think he

will play football.They just dont get it.When I am down in the dumps,there is no

therapy like typing away to this wonderful group,just getting things off your

chest.Sorry that school is so rough,its a shame that little ones get so much

support until they reach the upper grades.Children are children and no matter

how old they are they are still someones baby.Keep your chin up,schools almost

over.

Glad Tabitha is having a better day.LOLL<LOLL Becki and 3systemic

karens tribe wrote:

> Hi all..I am in a very blue mood today! Tabitha was absent from school

> yesterday because she hurt in every part of her body. Well today she is back

> in school which is a plus! But there I was filling out her absentee slip

> this morning and it made me so angry that i had to put again that my 17yo

> daughter was absent due to arthritis!!!!!! Don't get me wrong..Tab has had

> this since 89' but i still get so upset and angry that i just want to

> scream..my daughter will be 18 next year..she has had so many years robbed

> from her because of this disease...I know the postitive things I look for in

> Tabitha outway the bad arthritis..her spirit in general..but i still

> remember when she was 4 and i was laying on the couch..there she was

> watching the cheerleading competitions on espn and trying to do their moves,

> her neck was so stiff that it touched her chin..she could barely move...well

> i finally broke down since she had been diagnosed with it..2wks prior...all

> of sudden my child turned around and looked at me..said mommy don't cry when

> i get bigger..i will get better. Well i am sorry...yes she has definitely

> had improvements since way back then..alot of damage done to her

> joints..plus side to her knee and hip replacements..but still it hurts so

> much even after this long to see her in pain..I have seen children worse off

> then Tabitha but sometimes even that doesn't help..she has not hasn't had

> any kind of remission at all since her diagnosis..i honestly don't think she

> ever will..there is always hope..and i know that Tabitha can accomplish

> things she wants out of life....but i am thankful for a beautiful daughter.

> Just makes me angry!!And it hurts!!

> Sorry I may not make sense but i needed to chat to yall..no one else

> understands my hurt as a mother. Thank you for listening!

> hope all has a good day

> karen(tab17..poly)

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

>

>

>

>

[Guest guest]

- you have been on my mind so much since I read your post this morning -

and I was at a loss at what to say - which really bothered me because you always

offer me and so many other's so much hope and understanding. Here, friend Becki

said it all - so I will just tag along with her post and tell you that I have

not dealt with this nearly as long as you have - but the anger I do understand &

I know myself well enough to know that I will always have to find ways to combat

that. You and so many others here have done so much to help me with that - so

hopefully the good that you do and the spirit you see in Tabitha will cheer you.

Bless you and LOLL and hugs and tears for you both.

Val

Rob's Mom (4,systemic)

In a message dated Tue, 30 Apr 2002  4:51:53 PM Eastern Daylight Time, Allan

Larson <alarson1@...> writes:

>,isnt it amazing how strong are kids are.We try to protect them,and they

>try to protect us.When s having bad times I usually keep my fealings

>bottled up until they come pouring out. will come to me and put his little

>hand on my arm or pat my head and say dont cry mommy,I will be ok.Please dont

be

>sad.s to little to know what hes missing out on,but everyone always said

he

>was built like a linebacker,even knowing he has arthritis they still think he

>will play football.They just dont get it.When I am down in the dumps,there is

no

>therapy like typing away to this wonderful group,just getting things off your

>chest.Sorry that school is so rough,its a shame that little ones get so much

>support until they reach the upper grades.Children are children and no matter

>how old they are they are still someones baby.Keep your chin up,schools almost

>over.

>Glad Tabitha is having a better day.LOLL<LOLL   Becki and 3systemic

>

>karens tribe wrote:

>

>> Hi all..I am in a very blue mood today! Tabitha was absent from school

>> yesterday because she hurt in every part of her body. Well today she is back

>> in school which is a plus! But there I was filling out her absentee slip

>> this morning and it made me so angry that i had to put again that my 17yo

>> daughter was absent due to arthritis!!!!!! Don't get me wrong..Tab has had

>> this since 89' but i still get so upset and angry that i just want to

>> scream..my daughter will be 18 next year..she has had so many years robbed

>> from her because of this disease...I know the postitive things I look for in

>> Tabitha outway the bad arthritis..her spirit in general..but i still

>> remember when she was 4 and i was laying on the couch..there she was

>> watching the cheerleading competitions on espn and trying to do their moves,

>> her neck was so stiff that it touched her chin..she could barely move...well

>> i finally broke down since she had been diagnosed with it..2wks prior...all

>> of sudden my child turned around and looked at me..said mommy don't cry when

>> i get bigger..i will get better. Well i am sorry...yes she has definitely

>> had improvements since way back then..alot of damage done to her

>> joints..plus side to her knee and hip replacements..but still it hurts so

>> much even after this long to see her in pain..I have seen children worse off

>> then Tabitha but sometimes even that doesn't help..she has not hasn't had

>> any kind of remission at all since her diagnosis..i honestly don't think she

>> ever will..there is always hope..and i know that Tabitha can accomplish

>> things she wants out of life....but i am thankful for a beautiful daughter.

>> Just makes me angry!!And it hurts!!

>> Sorry I may not make sense but i needed to chat to yall..no one else

>> understands my hurt as a mother. Thank you for listening!

>> hope all has a good day

>> karen(tab17..poly)

>>

>> _________________________________________________________________

>> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>>

>>

>>

>>

>>

[Guest guest]

hang in there karen. hope tomorrow you feel better.

christy

[Guest guest]

Hi , I know how you feel because it hurt me so bad when I first found out about na having Polyarticular JRA and it hurt for me to see all the other babies crawling and walking and na could do nothing but scoot on her bottom and it really does hurt alot. It made me feel left out and very sad for na. I stayed depressed for a long time and I cried and Cried and I still do and I am so afraid of what her future may be but I know she will do her best and I will proud of her no matter what. I get so mad at this disease and I keep trying and trying to figure out why na and why any child or baby or adult. I don't know; It still depresses me a lot but I just have to take it one day at a time and we have to do our very best and I love and accept what god gave me and that is na. I love her so much and thats all that matters. Please don't be depressed but I know its not easy to not be depressed and I'd say about all of us has depression from this terrible disease. But also my child isn't as old as yours so I probably have no idea what I will be like by then if na still has this. We just have to keep going and keep helping our children the best that we can no matter how hard it is I hope you both get to feeling better and we will be praying for you : ) Jona- na poly JRA

karens tribe <nutsomom5@...> wrote: Hi all..I am in a very blue mood today! Tabitha was absent from school yesterday because she hurt in every part of her body. Well today she is back in school which is a plus! But there I was filling out her absentee slip this morning and it made me so angry that i had to put again that my 17yo daughter was absent due to arthritis!!!!!! Don't get me wrong..Tab has had this since 89' but i still get so upset and angry that i just want to scream..my daughter will be 18 next year..she has had so many years robbed from her because of this disease...I know the postitive things I look for in Tabitha outway the bad arthritis..her spirit in general..but i still remember when she was 4 and i was laying on the couch..there she was watching the cheerleading competitions on espn and trying to do their moves, her neck was so stiff that it touched her chin..she could barely move...well i finally broke down since she had been diagnosed with it..2wks prior...all of sudden my child turned around and looked at me..said mommy don't cry when i get bigger..i will get better. Well i am sorry...yes she has definitely had improvements since way back then..alot of damage done to her joints..plus side to her knee and hip replacements..but still it hurts so much even after this long to see her in pain..I have seen children worse off then Tabitha but sometimes even that doesn't help..she has not hasn't had any kind of remission at all since her diagnosis..i honestly don't think she ever will..there is always hope..and i know that Tabitha can accomplish things she wants out of life....but i am thankful for a beautiful daughter. Just makes me angry!!And it hurts!!Sorry I may not make sense but i needed to chat to yall..no one else understands my hurt as a mother. Thank you for listening!hope all has a good daykaren(tab17..poly)_________________________________________________________________Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

(((val)))you said the right thing..and thank you..good to know i have

friends(even though we all never met) i feel like all of you are apart of my

family..never will i give my computer up..i mean it..lol!

(((hugs to your little one))))

karen(tab17..poly)

From: carneyval@...

Reply-

Subject: Re: Re: need to vent

Date: Tue, 30 Apr 2002 17:17:29 -0400

- you have been on my mind so much since I read your post this morning

- and I was at a loss at what to say - which really bothered me because you

always offer me and so many other's so much hope and understanding. Here,

friend Becki said it all - so I will just tag along with her post and tell

you that I have not dealt with this nearly as long as you have - but the

anger I do understand & I know myself well enough to know that I will always

have to find ways to combat that. You and so many others here have done so

much to help me with that - so hopefully the good that you do and the spirit

you see in Tabitha will cheer you. Bless you and LOLL and hugs and tears

for you both.

Val

Rob's Mom (4,systemic)

In a message dated Tue, 30 Apr 2002  4:51:53 PM Eastern Daylight Time, Allan

Larson <alarson1@...> writes:

>,isnt it amazing how strong are kids are.We try to protect them,and

they

>try to protect us.When s having bad times I usually keep my fealings

>bottled up until they come pouring out. will come to me and put his

little

>hand on my arm or pat my head and say dont cry mommy,I will be ok.Please

dont be

>sad.s to little to know what hes missing out on,but everyone always

said he

>was built like a linebacker,even knowing he has arthritis they still think

he

>will play football.They just dont get it.When I am down in the dumps,there

is no

>therapy like typing away to this wonderful group,just getting things off

your

>chest.Sorry that school is so rough,its a shame that little ones get so

much

>support until they reach the upper grades.Children are children and no

matter

>how old they are they are still someones baby.Keep your chin up,schools

almost

>over.

>Glad Tabitha is having a better day.LOLL<LOLL   Becki and 3systemic

>

>karens tribe wrote:

>

>> Hi all..I am in a very blue mood today! Tabitha was absent from school

>> yesterday because she hurt in every part of her body. Well today she is

back

>> in school which is a plus! But there I was filling out her absentee slip

>> this morning and it made me so angry that i had to put again that my

17yo

>> daughter was absent due to arthritis!!!!!! Don't get me wrong..Tab has

had

>> this since 89' but i still get so upset and angry that i just want to

>> scream..my daughter will be 18 next year..she has had so many years

robbed

>> from her because of this disease...I know the postitive things I look

for in

>> Tabitha outway the bad arthritis..her spirit in general..but i still

>> remember when she was 4 and i was laying on the couch..there she was

>> watching the cheerleading competitions on espn and trying to do their

moves,

>> her neck was so stiff that it touched her chin..she could barely

move...well

>> i finally broke down since she had been diagnosed with it..2wks

prior...all

>> of sudden my child turned around and looked at me..said mommy don't cry

when

>> i get bigger..i will get better. Well i am sorry...yes she has

definitely

>> had improvements since way back then..alot of damage done to her

>> joints..plus side to her knee and hip replacements..but still it hurts

so

>> much even after this long to see her in pain..I have seen children worse

off

>> then Tabitha but sometimes even that doesn't help..she has not hasn't

had

>> any kind of remission at all since her diagnosis..i honestly don't think

she

>> ever will..there is always hope..and i know that Tabitha can accomplish

>> things she wants out of life....but i am thankful for a beautiful

daughter.

>> Just makes me angry!!And it hurts!!

>> Sorry I may not make sense but i needed to chat to yall..no one else

>> understands my hurt as a mother. Thank you for listening!

>> hope all has a good day

>> karen(tab17..poly)

>>

>> _________________________________________________________________

>> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>>

>>

>>

>>

>>

[Guest guest]

Val,

Just got goosebumps,dont know why,guess the part about heres a magic

pill,everything will be ok,and I too feal like I could not give up this list,too

many new friends.LOLL Becki and 3systemic

carneyval@... wrote:

> ((())) Thanks! I'm not giving up my computer either! If by some miracle

they came tomorrow and told this JRA was all a big mistake, it's something else

and here's the magic pill to fix it (ok - so I dream a little) - I would be hard

pressed to leave this group - I would want to know how everyone is doing!

> Val

> Rob's Mom (4,systemic)

>

> In a message dated Wed, 1 May 2002 6:28:24 AM Eastern Daylight Time, " karens

tribe " <nutsomom5@...> writes:

>

> >(((val)))you said the right thing..and thank you..good to know i have

> >friends(even though we all never met) i feel like all of you are apart of my

> >family..never will i give my computer up..i mean it..lol!

> >(((hugs to your little one))))

> >karen(tab17..poly)

> >

> >From: carneyval@...

> >Reply-

> >

> >Subject: Re: Re: need to vent

> >Date: Tue, 30 Apr 2002 17:17:29 -0400

> >

> > - you have been on my mind so much since I read your post this morning

> >- and I was at a loss at what to say - which really bothered me because you

> >always offer me and so many other's so much hope and understanding. Here,

> >friend Becki said it all - so I will just tag along with her post and tell

> >you that I have not dealt with this nearly as long as you have - but the

> >anger I do understand & I know myself well enough to know that I will always

> >have to find ways to combat that. You and so many others here have done so

> >much to help me with that - so hopefully the good that you do and the spirit

> >you see in Tabitha will cheer you. Bless you and LOLL and hugs and tears

> >for you both.

> >Val

> >Rob's Mom (4,systemic)

> >

> >In a message dated Tue, 30 Apr 2002 4:51:53 PM Eastern Daylight Time, Allan

> >Larson <alarson1@...> writes:

> >

> > >,isnt it amazing how strong are kids are.We try to protect them,and

> >they

> > >try to protect us.When s having bad times I usually keep my fealings

> > >bottled up until they come pouring out. will come to me and put his

> >little

> > >hand on my arm or pat my head and say dont cry mommy,I will be ok.Please

> >dont be

> > >sad.s to little to know what hes missing out on,but everyone always

> >said he

> > >was built like a linebacker,even knowing he has arthritis they still think

> >he

> > >will play football.They just dont get it.When I am down in the dumps,there

> >is no

> > >therapy like typing away to this wonderful group,just getting things off

> >your

> > >chest.Sorry that school is so rough,its a shame that little ones get so

> >much

> > >support until they reach the upper grades.Children are children and no

> >matter

> > >how old they are they are still someones baby.Keep your chin up,schools

> >almost

> > >over.

> > >Glad Tabitha is having a better day.LOLL<LOLL Becki and 3systemic

> > >

> > >karens tribe wrote:

> > >

> > >> Hi all..I am in a very blue mood today! Tabitha was absent from school

> > >> yesterday because she hurt in every part of her body. Well today she is

> >back

> > >> in school which is a plus! But there I was filling out her absentee slip

> > >> this morning and it made me so angry that i had to put again that my

> >17yo

> > >> daughter was absent due to arthritis!!!!!! Don't get me wrong..Tab has

> >had

> > >> this since 89' but i still get so upset and angry that i just want to

> > >> scream..my daughter will be 18 next year..she has had so many years

> >robbed

> > >> from her because of this disease...I know the postitive things I look

> >for in

> > >> Tabitha outway the bad arthritis..her spirit in general..but i still

> > >> remember when she was 4 and i was laying on the couch..there she was

> > >> watching the cheerleading competitions on espn and trying to do their

> >moves,

> > >> her neck was so stiff that it touched her chin..she could barely

> >move...well

> > >> i finally broke down since she had been diagnosed with it..2wks

> >prior...all

> > >> of sudden my child turned around and looked at me..said mommy don't cry

> >when

> > >> i get bigger..i will get better. Well i am sorry...yes she has

> >definitely

> > >> had improvements since way back then..alot of damage done to her

> > >> joints..plus side to her knee and hip replacements..but still it hurts

> >so

> > >> much even after this long to see her in pain..I have seen children worse

> >off

> > >> then Tabitha but sometimes even that doesn't help..she has not hasn't

> >had

> > >> any kind of remission at all since her diagnosis..i honestly don't think

> >she

> > >> ever will..there is always hope..and i know that Tabitha can accomplish

> > >> things she wants out of life....but i am thankful for a beautiful

> >daughter.

> > >> Just makes me angry!!And it hurts!!

> > >> Sorry I may not make sense but i needed to chat to yall..no one else

> > >> understands my hurt as a mother. Thank you for listening!

> > >> hope all has a good day

> > >> karen(tab17..poly)

> > >>

> > >> _________________________________________________________________

> > >> Chat with friends online, try MSN Messenger: http://messenger.msn.com

> > >>

> > >>

> > >>

> > >>

> > >>

[Guest guest]

Becki - I kind of felt that way after I wrote it. Wouldn't it be nice if it

would be that easy for all of our kids - and our JRA veterans too. I wish ....

oh well - this morning was a good day for Rob - and I am ready to go pick him up

and enjoy his company so I am blessed.

Val

Rob's Mom (4,systemic)

In a message dated Wed, 1 May 2002 12:12:45 PM Eastern Daylight Time, Allan

Larson <alarson1@...> writes:

>Val,

>      Just got goosebumps,dont know why,guess the part about heres a magic

pill,everything will be ok,and I too feal like I could not give up this list,too

many new friends.LOLL Becki and 3systemic

>

>carneyval@... wrote:

>

>> ((())) Thanks! I'm not giving up my computer either! If by some miracle

they came tomorrow and told this JRA was all a big mistake, it's something else

and here's the magic pill to fix it (ok - so I dream a little) - I would be hard

pressed to leave this group - I would want to know how everyone is doing!

>> Val

>> Rob's Mom (4,systemic)

>>

>> In a message dated Wed, 1 May 2002  6:28:24 AM Eastern Daylight Time, " karens

tribe " <nutsomom5@...> writes:

>>

>> >(((val)))you said the right thing..and thank you..good to know i have

>> >friends(even though we all never met) i feel like all of you are apart of my

>> >family..never will i give my computer up..i mean it..lol!

>> >(((hugs to your little one))))

>> >karen(tab17..poly)

>> >

>> >From: carneyval@...

>> >Reply-

>> >

>> >Subject: Re: Re: need to vent

>> >Date: Tue, 30 Apr 2002 17:17:29 -0400

>> >

>> > - you have been on my mind so much since I read your post this morning

>> >- and I was at a loss at what to say - which really bothered me because you

>> >always offer me and so many other's so much hope and understanding.  Here,

>> >friend Becki said it all - so I will just tag along with her post and tell

>> >you that I have not dealt with this nearly as long as you have - but the

>> >anger I do understand & I know myself well enough to know that I will always

>> >have to find ways to combat that.  You and so many others here have done so

>> >much to help me with that - so hopefully the good that you do and the spirit

>> >you see in Tabitha will cheer you.  Bless you and LOLL and hugs and tears

>> >for you both.

>> >Val

>> >Rob's Mom (4,systemic)

>> >

>> >In a message dated Tue, 30 Apr 2002  4:51:53 PM Eastern Daylight Time, Allan

>> >Larson <alarson1@...> writes:

>> >

>> > >,isnt it amazing how strong are kids are.We try to protect them,and

>> >they

>> > >try to protect us.When s having bad times I usually keep my fealings

>> > >bottled up until they come pouring out. will come to me and put his

>> >little

>> > >hand on my arm or pat my head and say dont cry mommy,I will be ok.Please

>> >dont be

>> > >sad.s to little to know what hes missing out on,but everyone always

>> >said he

>> > >was built like a linebacker,even knowing he has arthritis they still think

>> >he

>> > >will play football.They just dont get it.When I am down in the dumps,there

>> >is no

>> > >therapy like typing away to this wonderful group,just getting things off

>> >your

>> > >chest.Sorry that school is so rough,its a shame that little ones get so

>> >much

>> > >support until they reach the upper grades.Children are children and no

>> >matter

>> > >how old they are they are still someones baby.Keep your chin up,schools

>> >almost

>> > >over.

>> > >Glad Tabitha is having a better day.LOLL<LOLL   Becki and 3systemic

>> > >

>> > >karens tribe wrote:

>> > >

>> > >> Hi all..I am in a very blue mood today! Tabitha was absent from school

>> > >> yesterday because she hurt in every part of her body. Well today she is

>> >back

>> > >> in school which is a plus! But there I was filling out her absentee slip

>> > >> this morning and it made me so angry that i had to put again that my

>> >17yo

>> > >> daughter was absent due to arthritis!!!!!! Don't get me wrong..Tab has

>> >had

>> > >> this since 89' but i still get so upset and angry that i just want to

>> > >> scream..my daughter will be 18 next year..she has had so many years

>> >robbed

>> > >> from her because of this disease...I know the postitive things I look

>> >for in

>> > >> Tabitha outway the bad arthritis..her spirit in general..but i still

>> > >> remember when she was 4 and i was laying on the couch..there she was

>> > >> watching the cheerleading competitions on espn and trying to do their

>> >moves,

>> > >> her neck was so stiff that it touched her chin..she could barely

>> >move...well

>> > >> i finally broke down since she had been diagnosed with it..2wks

>> >prior...all

>> > >> of sudden my child turned around and looked at me..said mommy don't cry

>> >when

>> > >> i get bigger..i will get better. Well i am sorry...yes she has

>> >definitely

>> > >> had improvements since way back then..alot of damage done to her

>> > >> joints..plus side to her knee and hip replacements..but still it hurts

>> >so

>> > >> much even after this long to see her in pain..I have seen children worse

>> >off

>> > >> then Tabitha but sometimes even that doesn't help..she has not hasn't

>> >had

>> > >> any kind of remission at all since her diagnosis..i honestly don't think

>> >she

>> > >> ever will..there is always hope..and i know that Tabitha can accomplish

>> > >> things she wants out of life....but i am thankful for a beautiful

>> >daughter.

>> > >> Just makes me angry!!And it hurts!!

>> > >> Sorry I may not make sense but i needed to chat to yall..no one else

>> > >> understands my hurt as a mother. Thank you for listening!

>> > >> hope all has a good day

>> > >> karen(tab17..poly)

>> > >>

>> > >> _________________________________________________________________

>> > >> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>> > >>

>> > >>

>> > >>

>> > >>

>> > >>

[Guest guest]

I know how you feel, believe me, and my daughter is 5... I had to pick her up from pre-school yesterday because she couldn't move. The frustration and sometimes the guilt and all the other feelings you get as you watch your child suffer are so overwhelming that sometimes you have to cry to vent. I remember one time, when she was first diagnosed with this damn disease, she was sitting on the floor and she couldn't get off the floor. She looked at me and laughed and said "Mommy, I can't get up, he he" I had to leave the room. The last thing I wanted to do was let her see me upset. Sometimes, though, its tough. Especially when they have to draw blood and she gets so scared. Man, this is the hardest thing I am ever going to have to deal with. Then I read your emails and see how children that have Systemic Onset JRA still have it when they get older and all the troubles they are having and so, I think, is this what I am going to have to deal with? Sometimes, I don't even want to read mail. But, you are not alone in how you feel, that is for sure.

Theresa-West Palm Beach, FL ( JRA-3)

>From: "karens tribe"

>Reply- > >Subject: need to vent >Date: Tue, 30 Apr 2002 12:49:54 -0400 > >Hi all..I am in a very blue mood today! Tabitha was absent from school >yesterday because she hurt in every part of her body. Well today she is back >in school which is a plus! But there I was filling out her absentee slip >this morning and it made me so angry that i had to put again that my 17yo >daughter was absent due to arthritis!!!!!! Don't get me wrong..Tab has had >this since 89' but i still get so upset and angry that i just want to >scream..my daughter will be 18 next year..she has had so many years robbed >from her because of this disease...I know the postitive things I look for in >Tabitha outway the bad arthritis..her spirit in general..but i still >remember when she was 4 and i was laying on the couch..there she was >watching the cheerleading competitions on espn and trying to do their moves, >her neck was so stiff that it touched her chin..she could barely move...well >i finally broke down since she had been diagnosed with it..2wks prior...all >of sudden my child turned around and looked at me..said mommy don't cry when >i get bigger..i will get better. Well i am sorry...yes she has definitely >had improvements since way back then..alot of damage done to her >joints..plus side to her knee and hip replacements..but still it hurts so >much even after this long to see her in pain..I have seen children worse off >then Tabitha but sometimes even that doesn't help..she has not hasn't had >any kind of remission at all since her diagnosis..i honestly don't think she >ever will..there is always hope..and i know that Tabitha can accomplish >things she wants out of life....but i am thankful for a beautiful daughter. >Just makes me angry!!And it hurts!! >Sorry I may not make sense but i needed to chat to yall..no one else >understands my hurt as a mother. Thank you for listening! >hope all has a good day >karen(tab17..poly) > > > >_________________________________________________________________ >Chat with friends online, try MSN Messenger: http://messenger.msn.com > Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

Thereasa

your right we are not alone this group is here and we know theres others out there that are going through the same thing or have been where we are or going

not sure how you really are handleing this but being there for your child is the best you can do

i remember when was young and they wanted blood and i would have to HOLD her down and those words coming from her mouth MOM I HATE YOU I HATE YOU tears would try and start but i held back after wards she would hug me and say mom i love you in her sweet voice and say i am sorry it hurts a mom inside knowing what the kid is going through with tests and pain i wish there was something i could say that would help you get through those tough times after one of the blood tests one day i sat down and told her honey i know you dont like the needles i know they hurt and its invasive to you but mom dont know whats going on with things inside you and neither does the doctors right now but the blood will let the doctors know if something aint right and the only way is to get the tests done but i will be there with you through it all stand right by you and hold you she looked at me and said how much more blood will they get out i gave her a big hug and said baby i dont know i do know they will find whats wrong soon i also told her i didnt know everything so i am learning with her and i wouldnt let anyone do anything to her that i thought would hurt her in anyway the next time she was scared i told the blood taker that she has this done alot and she needed to becareful with her this nurse said sure i will be she took time with to show her things around her and what they were for then she said ok now its your turn remembered that this one nurse stuck her and she didnt feel it so said ok if i let you do this i want you to stick it right here lolol this nurse looked and said cool young dr you know where i need to get said that spot dont hurt grabbed me and hugged me i would count 1 2 3 4 its over and the nurse said yes and what kind of bandaid do you want big girl tears was in melissas eyes but she never cried

its really talking to the child and letting the child see that your going to protect him or her TRUST and reassuring there is also a cream called ELMA i believe that will numb the spot where they get blood if needed parents this is your child let the nurse know that your child os scared and you want the gentlest nurse they have to do it small request that will help and if the nurse if rough tell them to STOP they are working for YOU and some are having a bad day you pay them or the insurance company does but its your child if you wasnt there they wouldnt be there either 1 bad experience could cause a big problem for the child who has to routinely has to get this done also its best to stick with the same nurse and get to know her or him will talk with the nurse and tell her 1 stick is all your getting so make it the first time shes 15 and her voice will be heard and she knows i will let them know it to we are these kids voices say it loud Robbin

[Guest guest]

Becki

likes to see what they are useing the needles and all she does say use the butterfly needles ifthey use the smallest that needle has to go in farther BUT it dont hurt as bad as says lolol if any parents sees any nurse being MEAN to a child stand up and let the people know about it another thing to some will say its ok the child will be ok you parents can stay outside no way will i allow anyone do anything invasive to my kid without me being there

to hold my kid its YOUR right to be there with your kid this is something to watch for because when my son was younger this happened to him i didnt know til later if the nurse has a problem with a kid they do have this strap thing that goes over the kid to make them be still this terrified him so bad he had rolling veins the bruise on your son could be where the needle slipped alittle but have the doctor check it and let the nurse know next time or call the lab and tell them if it starts getting warm to touch call the doctor due to medications these kids are on they can bruise more can get stuck at times and never know where the needle went in then other times she will bruise some when they take the needle out make sure pressure is on the site for at least 3 minutes

my hubby has had blood clots and this is what they told us since his blood was thin due to warfin or another name for it is coumadin blood thinner he will bruise bad unless you hold pressure on it another thing is how often they stick them to because it is a stick inside the vein the vein closes off the needle stick like a sore will scab and since our kids get stuck alot there could be a scab like inside the vein has 2 places she will let them stick her one place is the arm the other is right on top of the hand she has surface veins that are green and easy to get blood from but they rotate these spots

them immune system attacks the needle its a invader remember that

Robbin

PS

lololol parents remember that this is your child and not a nurses guinea pig if the nurse wants to play with a guinea pig she or he better look for one at the pet shop and not on our kids

[Guest guest]

Becki-

It's amazing how much difference a good phlebotomist can make. I took

to a lab where the technician sounds much like the one you were describing.

She was screaming at my 2 year old that she'd better be still or she'd have

to do it again. was being as still as a statue. For some reason, this

woman could not get the blood. She was jiggling the needle around, obviously

hurting . Then she decided to try the other arm. got hysterical.

I was holding her other arm, but she managed to " escape " and yanked the

needle out. Blood was spurting up like a fountain. The tech just dropped

the needle and went on and on about how she can't afford to get stuck because

then she'll have to get tested. She was yelling at me for not holding

tight enough. She'd blown the veins in both arms and then she told me she

didn't have enough blood -come back in 2 days. She said next time I'll have

you lie on top of to hold her still (yeah right --- great idea). I

was very calm through the ordeal, but left the office and burst into tears.

's arms were bruised for well over a week. Needless to say we did not

go back. I found another place who is absolutely wonderful with children

although it is very inconvenient location-wise. But every time we go for

labs, says, " Don't take me back to the bad lady. " It was an experience

I'll never forget.

Diane (, 3, pauci)

[Guest guest]

Thereasa,Robbin has pretty much said it all.As adults we know that its

mostly in our head that it doesnt really hurt,I would rather have blood

taken from my arm than my finger pricked,but our kids are terrified,they

learn to accept it but they dont ever like it.Robbin is right one bad nurse

can make things 10 times worse.When first started going to Vanderbilt,our

rheumy told us the lab lady was great and all the kids loved her,she was

a nightmare strait from h???.She had the nerve to tell our then 2 yr old

son,in a very mean voice"you better be still or Ill have to stick you again"all

kinds of nasty things.We stayed quiet for a few months,then we had enough.

was making it very clear that he did not like the"mean stupid lady"One

visit my husband complained to the rheumy and the lady at the desk and

was told to go down to the lab room and if she is there come back and let

them know who it was because it was UNACCEPTABLE,to treat any child that

way,that they would get someone else to do the labs.We must not have been

the only ones to complain,because we have not seen the"mean,stupid lady"since.The

women in there now are great.They talk to and keep him distracted,and

he does much better,I do have to admit they did something to him this last

time.I can understand a dark bruise where the needle whent in,but I cant

figure out the dark bruise a inch below,its been a week and half and its

still there. HATES the band they put on your arm,so now they put it

on his shirt and they give him a fake brain to squeeze.We tried the Emla

but starts to cry almost immediately,he says it burns.I have read

that it doesnt work as well for kids under 7.Not that it doesnt work, its

a mind thing,they are just to scared, so they have all these fears in there

head.I have noticed something else that makes a big differance,at least

for .Vanderbilt uses the butterfly that has the cathetar attatched

to it,very small needle but they put it in further,our local hospital,whos

lab lady is the BEST,uses a butterfly no cathetar, bigger needle,at least

it looks bigger,but they only put it in past the hole,he doesnt feal a

thing.Always be honest with your child,if they ask if they are to have

labs be truthful,and talk to them,it works alot better then saying I dont

know,then surprise,off to the lab room.I dont think its this way for all

the kids on this list,but if is on a maintinance dose(hasnt been

raised)of MTX he only has to have labs done every other month.Hang in there

things will get better. Becki and 3systemic

Robbin40@... wrote:

Thereasa

your right we are not alone

this group is here and we know theres others out there that are going through

the same thing or have been where we are or going

not sure how you really

are handleing this but being there for your child is the best you can do

i remember when

was young and they wanted blood and i would have to HOLD her down

and those words coming from her mouth MOM I HATE YOU I HATE YOU

tears would try and start but i held back after wards she would hug

me and say mom i love you in her sweet voice and say i am sorry

it hurts a mom inside knowing

what the kid is going through with tests

and pain

i wish there was something

i could say that would help you get through those tough times

after one of the blood tests

one day i sat down and told her

honey i know you dont

like the needles i know they hurt and its invasive to you

but mom dont know whats

going on with things inside you and neither does the doctors right now

but the blood will let the doctors know if something aint right

and the only way is to get

the tests done

but i will be there with

you through it all stand right by you and hold you

she looked at me and said

how much more blood will they get out

i gave her a big hug and

said baby i dont know i do know they will find whats wrong soon

i also told her i didnt know everything so i am learning with her

and i wouldnt let anyone do anything to her that i thought would hurt her

in anyway

the next time she was scared

i told the blood taker that she has this done alot and she needed to becareful

with her this nurse said sure i will be she took time with to show

her things around her and what they were for

then she said ok now its

your turn remembered that this one nurse stuck her and she

didnt feel it so said ok if i let you do this

i want you to stick it right

here lolol this nurse looked and said cool young dr you know where i need

to get said that spot dont hurt

grabbed me and hugged

me i would count 1 2 3 4 its over and the nurse said

yes and what kind of bandaid do you want big girl tears was

in melissas eyes but she never cried

its really talking to the

child and letting the child see that your going to protect him or her

TRUST and reassuring

there is also a cream called

ELMA i believe that will numb the spot where they get blood if needed

parents this is your child

let the nurse know that your child os scared and you want the gentlest

nurse they have to do it

small request that will

help and if the nurse if rough tell them to STOP

they are working for YOU

and some are having a bad day

you pay them or the insurance

company does but its your child

if you wasnt there they

wouldnt be there either

1 bad experience could cause

a big problem for the child who has to routinely has to get this done

also its best to stick with the same nurse and get to know her or him

will talk with the

nurse and tell her 1 stick is all your getting

so make it the first time

shes 15 and her voice will

be heard

and she knows i will let

them know it to

we are these kids voices

say it loud

Robbin

[Guest guest]

Diane i am glad you found another lab tech to do your child

not ONLY do we have to worry about who takes our kids blood you just reminded me of WHO is taking the childs blood who knows what the personal life of a tech is and what he or she may have and WE are trusting them with a risky business when my son was 3 i think i got a call on the phone and my sister in law said Robbin take Joe ASAP to get checked i said for what hes doing ok she said i heard over the TV that anyone who had a blood transfusion during 1975 to 1980? that they are needing to be checked i said for what she said AIDS i told her look what channel were you watching she told me and i checked this out

they were telling everyone to get checked due to the AIDS scare i called the CDC and they asked me alot of questions well he wasnt at a real high risk but they would screen him for AIDS and HEP my son was born with jaudice and they said he needed a transfusion i refused the transfusion at the time and he got better but he was stuck alot within a week risky and nerve racking he was ok and still is ok now my brother got into a fight with a high school bully and he lives with hepitis C i believe he gets so sick at times its the hepitis that naomi judd has he caught it at 15 doctor said he had 5 years well this boy is 24 now and still doing good so we risk alot when these lab techs are taking blood from our kids these kids are HIGH RISK of catching anything and should be on the TOP of the list with CARING and nurturing lab TECHS just a few words from me lololol

Robbin

[Guest guest]

Hi Becki,

I am sorry that the EMLA cream didn't help . Robbie never had a problem

with it - his skin does get a little red in the area if the cream is on too

long. I always make sure I wash his arm after they draw the blood. It does

work great for Robbie - they stuck him three times once and the first two were

in areas that had the cream - and he watched the whole thing. The third stick

they tried an area just below where I had applied the cream - Rob thought they

were sticking an area that had the cream - but felt it as soon as the needle

went in. That was enough for me to believe. Hope is doing better than he

was last week.

Val

Rob's Mom (4,systemic)

In a message dated Sat, 4 May 2002  9:18:59 AM Eastern Daylight Time, Allan

Larson <alarson1@...> writes:

>Thereasa,Robbin has pretty much said it all.As adults we know that its

>mostly in our head that it doesnt really hurt,I would rather have blood

>taken from my arm than my finger pricked,but our kids are terrified,they

>learn to accept it but they dont ever like it.Robbin is right one bad

>nurse can make things 10 times worse.When first started going to

>Vanderbilt,our rheumy told us the lab lady was great and all the kids

>loved her,she was a nightmare strait from h???.She had the nerve to tell

>our then 2 yr old son,in a very mean voice " you better be still or Ill

>have to stick you again " all kinds of nasty things.We stayed quiet for a

>few months,then we had enough. was making it very clear that he did

>not like the " mean stupid lady " One visit my husband complained to the

>rheumy and the lady at the desk and was told to go down to the lab room

>and if she is there come back and let them know who it was because it

>was UNACCEPTABLE,to treat any child that way,that they would get someone

>else to do the labs.We must not have been the only ones to

>complain,because we have not seen the " mean,stupid lady " since.The women

>in there now are great.They talk to and keep him distracted,and he

>does much better,I do have to admit they did something to him this last

>time.I can understand a dark bruise where the needle whent in,but I cant

>figure out the dark bruise a inch below,its been a week and half and its

>still there. HATES the band they put on your arm,so now they put it

>on his shirt and they give him a fake brain to squeeze.We tried the Emla

>but starts to cry almost immediately,he says it burns.I have read

>that it doesnt work as well for kids under 7.Not that it doesnt work,

>its a mind thing,they are just to scared, so they have all these fears

>in there head.I have noticed something else that makes a big

>differance,at least for .Vanderbilt uses the butterfly that has the

>cathetar attatched to it,very small needle but they put it in

>further,our local hospital,whos lab lady is the BEST,uses a butterfly no

>cathetar, bigger needle,at least it looks bigger,but they only put it in

>past the hole,he doesnt feal a thing.Always be honest with your child,if

>they ask if they are to have labs be truthful,and talk to them,it works

>alot better then saying I dont know,then surprise,off to the lab room.I

>dont think its this way for all the kids on this list,but if is on

>a maintinance dose(hasnt been raised)of MTX he only has to have labs

>done every other month.Hang in there things will get better.    Becki

>and 3systemic

>

>Robbin40@... wrote:

>

>>  Thereasa

>> your right we are not alone  this group is here and we know theres

>> others out there that are going through the same thing or have been

>> where we are or going

>> not sure how you really are handleing this but being there for your

>> child is the best you can do

>> i remember when was young and they wanted blood and i would

>> have to HOLD her down  and those words coming from her mouth  MOM I

>> HATE YOU I HATE YOU  tears would try and start  but i held back after

>> wards she would hug me and say mom i love you in her sweet voice and

>> say i am sorry

>> it hurts a mom inside knowing what the kid is going through with tests

>>

>> and pain

>> i wish there was something i could say that would help you get through

>> those tough times

>> after one of the blood tests one day i sat down and told her

>> honey  i know you dont like the needles i know they hurt and its

>> invasive to you

>> but mom dont know whats going on with things inside you and neither

>> does the doctors right now but the blood will let the doctors know if

>> something aint right

>> and the only way is to get the tests done

>> but i will be there with you through it all  stand right by you and

>> hold you

>> she looked at me and said how much more blood will they get out

>> i gave her a big hug and said baby i dont know  i do know they will

>> find whats wrong soon  i also told her i didnt know everything  so i

>> am learning with her  and i wouldnt let anyone do anything to her that

>> i thought would hurt her in anyway

>> the next time she was scared  i told the blood taker that she has this

>> done alot and she needed to becareful with her this nurse said sure i

>> will be she took time with to show her things around her and

>> what they were for

>> then she said ok now its your turn   remembered that this one

>> nurse stuck her and she didnt feel it  so said ok if i let you

>> do this

>> i want you to stick it right here lolol this nurse looked and said

>> cool young dr you know where i need to get   said that spot

>> dont hurt

>> grabbed me and hugged me   i would count 1 2 3 4 its over  and

>> the nurse said yes  and what kind of bandaid do you want big girl

>> tears was in melissas eyes but she never cried  

>> its really talking to the child and letting the child see that your

>> going to protect him or her  TRUST  and reassuring

>> there is also a cream called ELMA i believe that will numb the spot

>> where they get blood if needed

>> parents this is your child  let the nurse know that your child os

>> scared and you want the gentlest nurse they have to do it

>> small request that will help  and if the nurse if rough tell them to

>> STOP

>> they are working for YOU and some are having a bad day

>> you pay them or the insurance company does but its your child

>> if you wasnt there they wouldnt be there either

>> 1 bad experience could cause a big problem for the child who has to

>> routinely has to get this done  also its best to stick with the same

>> nurse and get to know her or him

>> will talk with the nurse and tell her 1 stick is all your

>> getting

>> so make it the first time

>> shes 15 and her voice will be heard

>> and she knows i will let them know it to

>> we are these kids voices  say it loud

>> Robbin

>>                    

[Guest guest]

Hi Becki - it's Val again - I just remembered something we learned in

phlebotomty class (yes I am one of those people who used to draw blood on a

regular basis) - anyway - it is, of course important to hold pressure long

enough for the blood not to clot - but it is better to raise the arm for a

minute or so (easier said than done with a child, I know) - but also the

bruising will be worse if the elbow is bent - the elbow should be kept straight

while the blood is given time to clot.

Val

Rob's Mom (4,systemic)

In a message dated Sat, 4 May 2002 12:01:56 PM Eastern Daylight Time,

Robbin40@... writes:

>Becki

> likes to see what they are useing  the needles and all

>she does say use the butterfly needles  ifthey use the smallest that needle

>has to go in farther BUT it dont hurt as bad  as says lolol

>if any parents sees any nurse being MEAN to a child  stand up and let the

>people know about it

>another thing to some will say  its ok the child will be ok  you parents can

>stay outside

>no way will i allow anyone do anything invasive to my kid without me being

>there

>to hold my kid  its YOUR right to be there with your kid

>this is something to watch for because  when my son was younger this happened

>to him  i didnt know til later

>if the nurse has a problem with a kid they do have this strap thing that goes

>over the kid to make them be still

>this terrified him so bad

>he had rolling veins

>the bruise on your son could be where the needle slipped alittle but have the

>doctor check it and let the nurse know next time or call the lab and tell

>them

>if it starts getting warm to touch call the doctor

>due to medications these kids are on they can bruise more

> can get stuck at times and never know where the needle went in

>then other times she will bruise some

>when they take the needle out make sure pressure is on the site  for at least

>3 minutes  

>my hubby has had blood clots and this is what they told us

>since his blood was thin due to warfin or another name for it is coumadin  

>blood thinner  he will bruise bad unless you hold pressure on it

>another thing is how often they stick them to because it is a stick  inside

>the vein

>the vein closes off the needle stick like a sore will scab and since our kids

>get stuck alot  there could be a scab like inside the vein

> has 2 places she will let them stick her one place is the arm  the

>other is right on top of the hand  she has surface veins that are green and

>easy to get blood from  but they rotate these spots  

>them immune system attacks the needle its a invader remember that

>Robbin

>PS

>lololol  parents remember that this is your child and not a nurses guinea pig

>if the nurse wants to play with a guinea pig she or he better look for one at

>the pet shop  and not on our kids

>

[Guest guest]

Becki-

I hope 's sister's virus doesn't trigger anything for him. Let us know how his appt goes.

Diane (, 3, pauci)

[Guest guest]

Hi Becki,

Hang in there - I hope that and Shelby both feel better soon, and that

doen't get what Shelby has. Getting close to they year mark can sure give

you the creeps. People keep inviting me out of town this weekend - and it was

around this time last year that we went out of town - and then Rob got sick so

soon after that when they were searching for answers and thought he may have had

a tick bite or something from our trip. What a long rough year for you and

. Hugs to both of you.

Val

Rob's Mom(4,systemic)

In a message dated Tue, 21 May 2002  3:04:31 PM Eastern Daylight Time, Allan

Larson <alarson1@...> writes:

>Hey gang its Becki,

>Kind of down in the dumps today.Almost exactly one yr ago today

>and his sister caught a virus that triggered s JRA.Now his sister

>is home sick with the exact same symptoms they had last year. got

>droped to 10mg saturday night and this morning he was really stiff and

>it lasted forever,hes all rashy and has some welts/hives,his knees look

>swollen and both his ankles look like crap again.He doesnt know anything

>is wrong though,same ole wild self.Yesterday was very active around hear

>and played and played.I know that could explain the joint swelling

>but I dont know about the rash.The timing is perfect for him to react to

>the pred taper but hes been looking great untill this morning.Hes not

>fealing bad for that I am grateful,but for its usually late at

>night when he starts to feal the affects of a long hard day.Just with my

>daughter being sick its bringing back all the memories of how and when

>this nightmare started.I hope I didnt make a mistake in droping his

>pred,I hope that he quickly adjusts and the swelling goes down.He sees

>the rheumy tommorrow which I hope goes well.He has been having weird

>skin reactions especially where he has his MTX injection,his shot from 2

>fridays ago is still welted yet last fridays shot didnt do anything.He

>also is bruising a little more,but I dont think its anymore than any

>child his age,but with the meds you have to be careful.So many questions

>that most the time the drs cant give you an answer.It seems like its

>always mayby,mayby not.I hope doesnt catch this virus,its one of

>those with a fever around 104,and sorethroat.I dont know what this will

>do to if he catches it.It seems strange, is the one who is

>supposed to be getting sick all the time,but hes not its his sister.This

>is the 5th illness since April 8th. hasnt caught none of them.I am

>through venting.Shelby goes to the ped in 30 minuites,need to find out

>what she has incase does get it.Thanks for listening,Ill let you

>know about tommorrow after his appointment.

>Becki and 3systemic

>

>

>

>

>

>

[Guest guest]

We are praying that stays well and that his sister feels better soon. We'll even throw in one for you Becki, we don't want you getting sick either! Take care,

Eli and Riley

[Guest guest]

Hi Becki I just wanted to let you know that I will be praying for your children Jona,mom of na 2poly

Allan Larson <alarson1@...> wrote: Hey gang its Becki,Kind of down in the dumps today.Almost exactly one yr ago today and his sister caught a virus that triggered s JRA.Now his sisteris home sick with the exact same symptoms they had last year. gotdroped to 10mg saturday night and this morning he was really stiff andit lasted forever,hes all rashy and has some welts/hives,his knees lookswollen and both his ankles look like crap again.He doesnt know anythingis wrong though,same ole wild self.Yesterday was very active around hearand played and played.I know that could explain the joint swellingbut I dont know about the rash.The timing is perfect for him to react tothe pred taper but hes been looking great untill this morning.Hes notfealing bad for that I am grateful,but for its usually late atnight when he starts to feal the affects of a long hard day.Just with mydaughter being sick its bringing back all the memories of how and whenthis nightmare started.I hope I didnt make a mistake in droping hispred,I hope that he quickly adjusts and the swelling goes down.He seesthe rheumy tommorrow which I hope goes well.He has been having weirdskin reactions especially where he has his MTX injection,his shot from 2fridays ago is still welted yet last fridays shot didnt do anything.Healso is bruising a little more,but I dont think its anymore than anychild his age,but with the meds you have to be careful.So many questionsthat most the time the drs cant give you an answer.It seems like itsalways mayby,mayby not.I hope doesnt catch this virus,its one ofthose with a fever around 104,and sorethroat.I dont know what this willdo to if he catches it.It seems strange, is the one who issupposed to be getting sick all the time,but hes not its his sister.Thisis the 5th illness since April 8th. hasnt caught none of them.I amthrough venting.Shelby goes to the ped in 30 minuites,need to find outwhat she has incase does get it.Thanks for listening,Ill let youknow about tommorrow after his appointment.Becki and 3systemic

[Guest guest]

Hey Val,

The good news is feals fine,he just looks like he should be hurting really

bad.Shelbys appointment was creapy.I mentioned that I was going through de ja

vue,and there ped caught on immediatelly.This appointment was exactly like last

year,several kids comming in with what looks like strep but its a virus.He even

mentioned how strange it was that when got the virus he had a little rash

under his eye then June 1st had the bike wreck that sent the jra in

hyperdrive,and when he went to see the

rheumy he had the exact same rash under the exact same eye.Im hanging on hoping

that s wildness is the reason he swelled back up,hopefully a couple of

easier days it will go away.This happened last week,he went non stop and payed

the price.I can handle that alot better then him not tolerating 10mg pred.He

never has problems at this dose its always been 9mg.Im going to bring up all of

s skin issues with the rheumy tommorrow,if I dont get answers off to the

dermitoligist or allergist.His

bottom is always eaten up with the same rash thats on his face,supposedly exema

and some sort of PK spots,cant remember,just know he never was prone to diaper

rash before the JRA and it doesnt look like diaper rash now.Whatever it is it

looks awful.He does still wear a goodnight pant at night,but its also on his

neck and groin,just a bunch of red bumps,hes also getting raw under his armpits

from heat I guess.Sometimes his injection site will welt up but not till a week

afterward.So many questions to

ask,probablly wont get a definate answer though.Is Rob still doing good,when do

you drop the pred again.I hope it goes well for him.

Becki and 3systemic

carneyval@... wrote:

> Hi Becki,

> Hang in there - I hope that and Shelby both feel better soon, and that

doen't get what Shelby has. Getting close to they year mark can sure give

you the creeps. People keep inviting me out of town this weekend - and it was

around this time last year that we went out of town - and then Rob got sick so

soon after that when they were searching for answers and thought he may have had

a tick bite or something from our trip. What a long rough year for you and

. Hugs to both of you.

> Val

> Rob's Mom(4,systemic)

> In a message dated Tue, 21 May 2002 3:04:31 PM Eastern Daylight Time, Allan

Larson <alarson1@...> writes:

>

> >Hey gang its Becki,

> >Kind of down in the dumps today.Almost exactly one yr ago today

> >and his sister caught a virus that triggered s JRA.Now his sister

> >is home sick with the exact same symptoms they had last year. got

> >droped to 10mg saturday night and this morning he was really stiff and

> >it lasted forever,hes all rashy and has some welts/hives,his knees look

> >swollen and both his ankles look like crap again.He doesnt know anything

> >is wrong though,same ole wild self.Yesterday was very active around hear

> >and played and played.I know that could explain the joint swelling

> >but I dont know about the rash.The timing is perfect for him to react to

> >the pred taper but hes been looking great untill this morning.Hes not

> >fealing bad for that I am grateful,but for its usually late at

> >night when he starts to feal the affects of a long hard day.Just with my

> >daughter being sick its bringing back all the memories of how and when

> >this nightmare started.I hope I didnt make a mistake in droping his

> >pred,I hope that he quickly adjusts and the swelling goes down.He sees

> >the rheumy tommorrow which I hope goes well.He has been having weird

> >skin reactions especially where he has his MTX injection,his shot from 2

> >fridays ago is still welted yet last fridays shot didnt do anything.He

> >also is bruising a little more,but I dont think its anymore than any

> >child his age,but with the meds you have to be careful.So many questions

> >that most the time the drs cant give you an answer.It seems like its

> >always mayby,mayby not.I hope doesnt catch this virus,its one of

> >those with a fever around 104,and sorethroat.I dont know what this will

> >do to if he catches it.It seems strange, is the one who is

> >supposed to be getting sick all the time,but hes not its his sister.This

> >is the 5th illness since April 8th. hasnt caught none of them.I am

> >through venting.Shelby goes to the ped in 30 minuites,need to find out

> >what she has incase does get it.Thanks for listening,Ill let you

> >know about tommorrow after his appointment.

> >Becki and 3systemic

> >

> >

> >

> >

> >

> >

[Guest guest]

Becki,

Hi,I dont write much here lately, but still read all the posts.

your post about s rash hit home. Last summer my daughter

, (systemic jra) also had an awful break out all over her

legs and arms. we went to the dermatologist, he did byopsies on a

couple spots. It turn out to be Molluscum Contagiosum. I dont know

what s rash looks like, but my daughters looked almost like

little warts in clusters together.And some spots were just red an

itchy.

I read every thing I could find about it on the internet, It said

it may be more persistent in people with weakened immuned

systems.Just like are kids are. The dermatologist prescribed a bunch

of differnent creams and I had to put acne masks on them to clear it

up.It did finally go away.

You might want to mention this to your Rhuemy tommorow or you can

look it up on a search on line, it will show you pictures of what it

looks like. Good Luck with your appointment,I hope s swelling

goes down. B.

>

> > Hi Becki,

> > Hang in there - I hope that and Shelby both feel better

soon, and that doen't get what Shelby has. Getting close to

they year mark can sure give you the creeps. People keep inviting me

out of town this weekend - and it was around this time last year that

we went out of town - and then Rob got sick so soon after that when

they were searching for answers and thought he may have had a tick

bite or something from our trip. What a long rough year for you and

. Hugs to both of you.

> > Val

> > Rob's Mom(4,systemic)

> > In a message dated Tue, 21 May 2002 3:04:31 PM Eastern Daylight

Time, Allan Larson <alarson1@b...> writes:

> >

> > >Hey gang its Becki,

> > >Kind of down in the dumps today.Almost exactly one yr ago today

> > >and his sister caught a virus that triggered s JRA.Now his

sister

> > >is home sick with the exact same symptoms they had last

year. got

> > >droped to 10mg saturday night and this morning he was really

stiff and

> > >it lasted forever,hes all rashy and has some welts/hives,his

knees look

> > >swollen and both his ankles look like crap again.He doesnt know

anything

> > >is wrong though,same ole wild self.Yesterday was very active

around hear

> > >and played and played.I know that could explain the joint

swelling

> > >but I dont know about the rash.The timing is perfect for him to

react to

> > >the pred taper but hes been looking great untill this

morning.Hes not

> > >fealing bad for that I am grateful,but for its usually

late at

> > >night when he starts to feal the affects of a long hard day.Just

with my

> > >daughter being sick its bringing back all the memories of how

and when

> > >this nightmare started.I hope I didnt make a mistake in droping

his

> > >pred,I hope that he quickly adjusts and the swelling goes

down.He sees

> > >the rheumy tommorrow which I hope goes well.He has been having

weird

> > >skin reactions especially where he has his MTX injection,his

shot from 2

> > >fridays ago is still welted yet last fridays shot didnt do

anything.He

> > >also is bruising a little more,but I dont think its anymore than

any

> > >child his age,but with the meds you have to be careful.So many

questions

> > >that most the time the drs cant give you an answer.It seems like

its

> > >always mayby,mayby not.I hope doesnt catch this virus,its

one of

> > >those with a fever around 104,and sorethroat.I dont know what

this will

> > >do to if he catches it.It seems strange, is the one

who is

> > >supposed to be getting sick all the time,but hes not its his

sister.This

> > >is the 5th illness since April 8th. hasnt caught none of

them.I am

> > >through venting.Shelby goes to the ped in 30 minuites,need to

find out

> > >what she has incase does get it.Thanks for listening,Ill

let you

> > >know about tommorrow after his appointment.

> > >Becki and 3systemic

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Becki,

I hope everything works out. the three of you are in

my prayers.

Love to all,

Casaria and Tasie

__________________________________________________

[Guest guest]

Hi Becki,

I feel so bad for . Robbie is doing so well that I am really afraid to say

it out loud, or write it. He is currently on 4.5 mg of prednisolone. (can't

believe it) - and has some complaints at times, but nothing compared to the past

- and he is so active - and his weight is down. He looks just great. We don't

lower the dose again until June 15 - then he will go to 3 mg. He'll stay there

until he sees the rheumy again in August & will have more labs done then. I

will be interested in that fibrin D-dimer test - since that is the one connected

to MAS - which wasn't a concern before. He is still on Cyclosporine, and the

lisinopril and zantac. We visited friends over the weekend - and they were

amazed at how well he takes his medicine compared to their kids - I just smiled,

compared to all the blood draws, IVs and hospitalizations Rob knows that a

little medicine is a piece of cake.

's rash sure is bothersome. I have eczema on my hands - and I am beginning

to have a flare of it - it can get really painful - I use some RX steriod cream

that helps when it gets real bad - I use a heavy duty Eucerin cream the rest of

the time - that generally keeps it from getting real bad. I hope the derm has

some answers and relief for you guys soon. Take care.

Hugs,

Val

Rob's Mom (4,systemic)

In a message dated Tue, 21 May 2002  5:08:51 PM Eastern Daylight Time, Allan

Larson <alarson1@...> writes:

>Hey Val,

>The good news is feals fine,he just looks like he should be hurting

really bad.Shelbys appointment was creapy.I mentioned that I was going through

de ja vue,and there ped caught on immediatelly.This appointment was exactly like

last year,several kids comming in with what looks like strep but its a virus.He

even mentioned how strange it was that when got the virus he had a little

rash under his eye then June 1st had the bike wreck that sent the jra in

hyperdrive,and when he went to see the

>rheumy he had the exact same rash under the exact same eye.Im hanging on hoping

that s wildness is the reason he swelled back up,hopefully a couple of

easier days it will go away.This happened last week,he went non stop and payed

the price.I can handle that alot better then him not tolerating 10mg pred.He

never has problems at this dose its always been 9mg.Im going to bring up all of

s skin issues with the rheumy tommorrow,if I dont get answers off to the

dermitoligist or allergist.His

>bottom is always eaten up with the same rash thats on his face,supposedly exema

and some sort of PK spots,cant remember,just know he never was prone to diaper

rash before the JRA and it doesnt look like diaper rash now.Whatever it is it

looks awful.He does still wear a goodnight pant at night,but its also on his

neck and groin,just a bunch of red bumps,hes also getting raw under his armpits

from heat I guess.Sometimes his injection site will welt up but not till a week

afterward.So many questions to

>ask,probablly wont get a definate answer though.Is Rob still doing good,when do

you drop the pred again.I hope it goes well for him.

>Becki and 3systemic

>

>carneyval@... wrote:

>

>> Hi Becki,

>> Hang in there - I hope that and Shelby both feel better soon, and that

doen't get what Shelby has.  Getting close to they year mark can sure give

you the creeps.  People keep inviting me out of town this weekend - and it was

around this time last year that we went out of town - and then Rob got sick so

soon after that when they were searching for answers and thought he may have had

a tick bite or something from our trip.  What a long rough year for you and

.  Hugs to both of you.

>> Val

>> Rob's Mom(4,systemic)

>> In a message dated Tue, 21 May 2002  3:04:31 PM Eastern Daylight Time, Allan

Larson <alarson1@...> writes:

>>

>> >Hey gang its Becki,

>> >Kind of down in the dumps today.Almost exactly one yr ago today

>> >and his sister caught a virus that triggered s JRA.Now his sister

>> >is home sick with the exact same symptoms they had last year. got

>> >droped to 10mg saturday night and this morning he was really stiff and

>> >it lasted forever,hes all rashy and has some welts/hives,his knees look

>> >swollen and both his ankles look like crap again.He doesnt know anything

>> >is wrong though,same ole wild self.Yesterday was very active around hear

>> >and played and played.I know that could explain the joint swelling

>> >but I dont know about the rash.The timing is perfect for him to react to

>> >the pred taper but hes been looking great untill this morning.Hes not

>> >fealing bad for that I am grateful,but for its usually late at

>> >night when he starts to feal the affects of a long hard day.Just with my

>> >daughter being sick its bringing back all the memories of how and when

>> >this nightmare started.I hope I didnt make a mistake in droping his

>> >pred,I hope that he quickly adjusts and the swelling goes down.He sees

>> >the rheumy tommorrow which I hope goes well.He has been having weird

>> >skin reactions especially where he has his MTX injection,his shot from 2

>> >fridays ago is still welted yet last fridays shot didnt do anything.He

>> >also is bruising a little more,but I dont think its anymore than any

>> >child his age,but with the meds you have to be careful.So many questions

>> >that most the time the drs cant give you an answer.It seems like its

>> >always mayby,mayby not.I hope doesnt catch this virus,its one of

>> >those with a fever around 104,and sorethroat.I dont know what this will

>> >do to if he catches it.It seems strange, is the one who is

>> >supposed to be getting sick all the time,but hes not its his sister.This

>> >is the 5th illness since April 8th. hasnt caught none of them.I am

>> >through venting.Shelby goes to the ped in 30 minuites,need to find out

>> >what she has incase does get it.Thanks for listening,Ill let you

>> >know about tommorrow after his appointment.

>> >Becki and 3systemic

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

Val,

It definatelly sounds like Rob is well on his way off the steroids which is

great.s still swollen but he doesnt know it, he is still my wild child.My

mom tells her sister that is a hellion even with the arthritis.He is such

a fighter I am sure he will be fine.Hes been on the Plaquenil almost a month now

2 more to go,I hope.We are going to take the taper slow,I wont drop again untill

the swelling goes down.There is a good chance that this fridays MTX shot will

wipe it out.I will just have to wait and see.It is very upsetting that he cant

get to low doses of steroids but at least the doses that he is on hes not

suffering,I worry about what is happening to the lft ankle as far as possible

damage,his arthur doesnt jump around.It hangs around in certain joints and stays

there,on really good days though its just the lft ankle.I hope Robbie continues

to do great.

Becki and

carneyval@... wrote:

> Hi Becki,

> I feel so bad for . Robbie is doing so well that I am really afraid to

say it out loud, or write it. He is currently on 4.5 mg of prednisolone.

(can't believe it) - and has some complaints at times, but nothing compared to

the past - and he is so active - and his weight is down. He looks just great.

We don't lower the dose again until June 15 - then he will go to 3 mg. He'll

stay there until he sees the rheumy again in August & will have more labs done

then. I will be interested in that fibrin D-dimer test - since that is the one

connected to MAS - which wasn't a concern before. He is still on Cyclosporine,

and the lisinopril and zantac. We visited friends over the weekend - and they

were amazed at how well he takes his medicine compared to their kids - I just

smiled, compared to all the blood draws, IVs and hospitalizations Rob knows that

a little medicine is a piece of cake.

>

> 's rash sure is bothersome. I have eczema on my hands - and I am

beginning to have a flare of it - it can get really painful - I use some RX

steriod cream that helps when it gets real bad - I use a heavy duty Eucerin

cream the rest of the time - that generally keeps it from getting real bad. I

hope the derm has some answers and relief for you guys soon. Take care.

> Hugs,

> Val

> Rob's Mom (4,systemic)

> In a message dated Tue, 21 May 2002 5:08:51 PM Eastern Daylight Time, Allan

Larson <alarson1@...> writes:

>

> >Hey Val,

> >The good news is feals fine,he just looks like he should be hurting

really bad.Shelbys appointment was creapy.I mentioned that I was going through

de ja vue,and there ped caught on immediatelly.This appointment was exactly like

last year,several kids comming in with what looks like strep but its a virus.He

even mentioned how strange it was that when got the virus he had a little

rash under his eye then June 1st had the bike wreck that sent the jra in

hyperdrive,and when he went to see the

> >rheumy he had the exact same rash under the exact same eye.Im hanging on

hoping that s wildness is the reason he swelled back up,hopefully a couple

of easier days it will go away.This happened last week,he went non stop and

payed the price.I can handle that alot better then him not tolerating 10mg

pred.He never has problems at this dose its always been 9mg.Im going to bring up

all of s skin issues with the rheumy tommorrow,if I dont get answers off to

the dermitoligist or allergist.His

> >bottom is always eaten up with the same rash thats on his face,supposedly

exema and some sort of PK spots,cant remember,just know he never was prone to

diaper rash before the JRA and it doesnt look like diaper rash now.Whatever it

is it looks awful.He does still wear a goodnight pant at night,but its also on

his neck and groin,just a bunch of red bumps,hes also getting raw under his

armpits from heat I guess.Sometimes his injection site will welt up but not till

a week afterward.So many questions to

> >ask,probablly wont get a definate answer though.Is Rob still doing good,when

do you drop the pred again.I hope it goes well for him.

> >Becki and 3systemic

> >

> >carneyval@... wrote:

> >

> >> Hi Becki,

> >> Hang in there - I hope that and Shelby both feel better soon, and

that doen't get what Shelby has. Getting close to they year mark can sure

give you the creeps. People keep inviting me out of town this weekend - and it

was around this time last year that we went out of town - and then Rob got sick

so soon after that when they were searching for answers and thought he may have

had a tick bite or something from our trip. What a long rough year for you and

. Hugs to both of you.

> >> Val

> >> Rob's Mom(4,systemic)

> >> In a message dated Tue, 21 May 2002 3:04:31 PM Eastern Daylight Time,

Allan Larson <alarson1@...> writes:

> >>

> >> >Hey gang its Becki,

> >> >Kind of down in the dumps today.Almost exactly one yr ago today

> >> >and his sister caught a virus that triggered s JRA.Now his sister

> >> >is home sick with the exact same symptoms they had last year. got

> >> >droped to 10mg saturday night and this morning he was really stiff and

> >> >it lasted forever,hes all rashy and has some welts/hives,his knees look

> >> >swollen and both his ankles look like crap again.He doesnt know anything

> >> >is wrong though,same ole wild self.Yesterday was very active around hear

> >> >and played and played.I know that could explain the joint swelling

> >> >but I dont know about the rash.The timing is perfect for him to react to

> >> >the pred taper but hes been looking great untill this morning.Hes not

> >> >fealing bad for that I am grateful,but for its usually late at

> >> >night when he starts to feal the affects of a long hard day.Just with my

> >> >daughter being sick its bringing back all the memories of how and when

> >> >this nightmare started.I hope I didnt make a mistake in droping his

> >> >pred,I hope that he quickly adjusts and the swelling goes down.He sees

> >> >the rheumy tommorrow which I hope goes well.He has been having weird

> >> >skin reactions especially where he has his MTX injection,his shot from 2

> >> >fridays ago is still welted yet last fridays shot didnt do anything.He

> >> >also is bruising a little more,but I dont think its anymore than any

> >> >child his age,but with the meds you have to be careful.So many questions

> >> >that most the time the drs cant give you an answer.It seems like its

> >> >always mayby,mayby not.I hope doesnt catch this virus,its one of

> >> >those with a fever around 104,and sorethroat.I dont know what this will

> >> >do to if he catches it.It seems strange, is the one who is

> >> >supposed to be getting sick all the time,but hes not its his sister.This

> >> >is the 5th illness since April 8th. hasnt caught none of them.I am

> >> >through venting.Shelby goes to the ped in 30 minuites,need to find out

> >> >what she has incase does get it.Thanks for listening,Ill let you

> >> >know about tommorrow after his appointment.

> >> >Becki and 3systemic

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

[Guest guest]

>I have to drive 35 minutes one way after dropping my girls

off ( and it takes 20 min to get to their school!) I am just so<

Aren't schools mandated to provide transportation to school? You should

probably call the Education Agency that oversees the school and maybe they will

contact the school about your son. Carlson