frustrated and depressed

[Guest guest]

Sorry to be so down, but this arthritis thing is finally catching up to

me. My Miranda (almost 11) started seeing a rheumy about a year ago,

and he thought she might have juvenile spondyloarthritis. Then, after

several months of treatment and rechecks, he said she may NOT have

arthritis, but maybe just hypermobility joint syndrome and she will

outgrow it. Apparently not the case. She had a major flare-up in June,

and has been on prednisone for the past 7 weeks. Now at her check up

today, she still has symptoms in her right knee, right hip and right

foot, even on the prednisone. Now rheumy says JRA (but blood test was

negative!).

We are moving to PA next week, and her rheumy wants to keep her on pred

until she can be seen by a new rheumy in Pittsburgh. I sure hope I can

get her in fast. Anyone on this list in the Pittsburgh area?

I am terrified to move now. I am afraid she will worsen in the interim.

This disease is so frustrating.

Sorry for venting. Thanks for being an outlet for confused parents like

me.

Sheila

Miranda (almost 11) JRA

On our way from CA to PA...

[Guest guest]

-Sheila.

Im sorry that you are so frustated, we can all relate to that at

various times. Not knowing whats going on and having a clear

treatment plan is the worse time.

I hope you have a safe trip. Can you try to get an appt set up for

PA before you leave CA. At least it will give you peace of mind for

you before you head across country.

keep in touch and let us know how it all goes.

hugs Helen and (8,systemic)

p.s most kids with JRA will be RF negative. There's no blood test to

rule in or rule out JRA.

-- In , " Sheila " <mannas_mom@...>

wrote:

>

> Sorry to be so down, but this arthritis thing is finally catching

up to

> me. My Miranda (almost 11) started seeing a rheumy about a year

ago,

> and he thought she might have juvenile spondyloarthritis. Then,

after

> several months of treatment and rechecks, he said she may NOT have

> arthritis, but maybe just hypermobility joint syndrome and she

will

> outgrow it. Apparently not the case. She had a major flare-up in

June,

> and has been on prednisone for the past 7 weeks. Now at her check

up

> today, she still has symptoms in her right knee, right hip and

right

> foot, even on the prednisone. Now rheumy says JRA (but blood test

was

> negative!).

> We are moving to PA next week, and her rheumy wants to keep her on

pred

> until she can be seen by a new rheumy in Pittsburgh. I sure hope I

can

> get her in fast. Anyone on this list in the Pittsburgh area?

> I am terrified to move now. I am afraid she will worsen in the

interim.

> This disease is so frustrating.

> Sorry for venting. Thanks for being an outlet for confused parents

like

> me.

> Sheila

> Miranda (almost 11) JRA

> On our way from CA to PA...

>

[Guest guest]

Dear Sheila,

It sounds like you certainly have been on a rollercoaster ride with

your daughter and her diagnosis. Pittsburgh is about 3-4 hours away

from us, and the rheumatologists in Pittsburgh are different from ours

(our state is about divided in three parts---JA kids are usually seen

in Philadelphia in the eastern part of PA, Hershey Med for the people

of central PA, and Pittsburgh for western PA). I used to be in touch

with a mom whose daughter was seen in Pittsburgh, and she was very

happy with the pediatric rheumatologist(s) there [can't remember is

there is more than one there or not!]. If you're not totally happy,

make the drive to Hershey if you possible. We have two great

pediatric rheumatologists. Also, you probably have already heard the

advice of calling to ask that your name be put on a cancellation

waiting list.

Hope you like Pennsylvania! And hope you have a very safe move.

Tammy (mom to , age 8; pauci-articular JA with related uveitis)

>

> Sorry to be so down, but this arthritis thing is finally catching up to

> me. My Miranda (almost 11) started seeing a rheumy about a year ago,

> and he thought she might have juvenile spondyloarthritis. Then, after

> several months of treatment and rechecks, he said she may NOT have

> arthritis, but maybe just hypermobility joint syndrome and she will

> outgrow it. Apparently not the case. She had a major flare-up in June,

> and has been on prednisone for the past 7 weeks. Now at her check up

> today, she still has symptoms in her right knee, right hip and right

> foot, even on the prednisone. Now rheumy says JRA (but blood test was

> negative!).

> We are moving to PA next week, and her rheumy wants to keep her on pred

> until she can be seen by a new rheumy in Pittsburgh. I sure hope I can

> get her in fast. Anyone on this list in the Pittsburgh area?

> I am terrified to move now. I am afraid she will worsen in the interim.

> This disease is so frustrating.

> Sorry for venting. Thanks for being an outlet for confused parents like

> me.

> Sheila

> Miranda (almost 11) JRA

> On our way from CA to PA...

>

[Guest guest]

,

Sorry to hear that Kaylee is having such a rough time of it. I have no input to

the Remicade question but can completely understand the " dad " issues you are

dealing with. You have to do what is best for Kaylee and you know that, it

would be nice if you had his support but since you dont you get to make these

decisions. My daughters father would pop up with questions like, " why don't you

try ibuprophin " or " cant she just take aspirin for that " . He has no idea who

her doctors are or when her appointments are. He always asks what's going on

with her and why are they doing that? but then I can talk to him a week later

and he has the same exact questions because he dose not listen to what I tell

him or he just does not remember the conversation. Jaye is older then

Kaylee now and so she and I make all the decisions together as to what we do for

her. It is not fair that our kids have to go through all this. I am not sure

what you can do for Kaylee to help her protect her joints so not to make it

worse untill they are better. I will pray that soon you will be able to calm the

inflamation in her eyes and joints so she can get back to being a normal kid.

Veri & Jaye 17 poly

Frustrated and Depressed

Hi everyone! I haven't posted in a while and don't post often. The last time I

posted, Kaylee was scheduled for a comprehensive testing. The results came back

and on top of having JA, Uveitis, being ADHD and ODD, she is suffering from PTSD

which is causing extreme anxiety and depression. So now I am trying to deal with

that and she has been given an antidepressant to help and goes to therapy as

well. Now, just this past week, Kaylee's ankle started hurting at her softball

game and she had to sit out the last inning. It looked bad and then the next

morning, her left knee was swollen and hot. I made the call to the rheumy and

got her in that afternoon. I couldn't believe it!So we went to Duke and it was

worse than I expected. Not only was her right ankle and left knee bad, but both

ankles and knees along with some issues going on with her right wrist. So, she

had been backed off Humira to doing it once every 4 weeks along with the MTX

weekly. Now she has to have Humira weekly along with the MTX and will be taking

celebrex as soon as the authorization goes through. The rheumy gave her

Naprosyn, but it made her sick so had to change. I am giving her some ibuprofen

until we can get the celebrex. We had the option of starting Remicade, but

Kaylee's dad didn't want to do it. Kaylee hates the Humira shots and I have a

difficult time with her. It is so traumatizing that I am almost ready to just

say okay let's do the Remicade, but I am scared. So here I am asking for your

advice and help. What are the side effects some of your kids have had and how

bad is it and such? I researched it some, but I need to hear from parents that

their kids do Remicade or have done it. I also need to know if they go on

Remicade do they ever go back to something else when things get better? To top

it all off, Kaylee's uveitis is not good in her right eye. She has 15-20 cells

and is doing pred forte 6x a day and a dilation drop (can never remember the

name)once a day. They have scheduled joint injections for May 3rd. What should I

do about the Remicade? I really don't care about what her dad wants. He and I

aren't together and I pretty much handle everything myself anyway so what he

thinks doesn't really matter to me. Sounds mean I know, but that's just the way

it is. I need your help! I need some feedback from the pros. I know this is

long, but I need help and I need to have an outlet for all this frustration and

depression I am having from all this at once. It's like finding out for the

first time all over again. Kaylee had done so well for over a year and the

Uveitis had been quiet for a year and a half or more. I keep blaming myself

somewhat too b/c I had missed some shots and feel like it is my fault that she

is in pain and suffering so much. I also need to know how to keep her off her

legs for a while as the dr. ordered so maybe she can go back to playing ball and

dancing; as of last Tuesday, she is not allowed to play ball or danc e until

further notice. She was using her crutches some,but b/c the ankle is hurting as

bad won't use them. What do I do to get through to her how important it is for

her to do as the dr. said so things won't get worse? I just want to runaway or

just crawl in a hole and stay there until it's all better, but I know I can't do

that. I have to be strong for Kaylee. I hope you all can help me in this dilemma

and help ease my anxiety over this.

Thanks for all the information I have gained from this site. Although I do not

participate regularly, I read the posts daily.

Thanks for being a great group and giving me hope.

Kaylee, ext. Pauci, Uveitis, ADHD, ODD

age 8 diagnosed at age 2

[Guest guest]

I am sorry you are going through all of this.  My daughter is on Remicade and

it

has worked great for er.  We now go every 6 -7 weeks for an infusion.  No side

effects at all.  She feels better right after the infusion.  (maybe mental but

who cares)  During the infusion we  lay games or she does her homework or we

sleep!  My daughter s older than yours bu had the choice and she choose

this over the painful Humaria shots!  Ask your daughter it is her body and she

is getting to the age where she can be told the pros and cons of each and hve

her discuss it with the doctor and you. 

Maureen

________________________________

From: Amy Spurger <mom2anz@...>

" " < >

Sent: Sun, April 24, 2011 4:38:46 PM

Subject: Re: Frustrated and Depressed

 

I have no advise for you, I just wanted to tell you I'm so sorry she is

having so many problems right now.  I will keep Kaylee in my prayers that she

gets through this flair quickly.

Amy mom to Avery 17 systemic

________________________________

From: ttownyvonne <maydo65@...>

Sent: Sunday, April 24, 2011 1:07 AM

Subject: Re: Frustrated and Depressed

 

Hi everyone! I haven't posted in a while and don't post often. The last time I

posted, Kaylee was scheduled for a comprehensive testing. The results came back

and on top of having JA, Uveitis, being ADHD and ODD, she is suffering from PTSD

which is causing extreme anxiety and depression. So now I am trying to deal with

that and she has been given an antidepressant to help and goes to therapy as

well. Now, just this past week, Kaylee's ankle started hurting at her softball

game and she had to sit out the last inning. It looked bad and then the next

morning, her left knee was swollen and hot. I made the call to the rheumy and

got her in that afternoon. I couldn't believe it!So we went to Duke and it was

worse than I expected. Not only was her right ankle and left knee bad, but both

ankles and knees along with some issues going on with her right wrist. So, she

had been backed off Humira to doing it once every 4 weeks along with the MTX

weekly. Now she has

to have Humira weekly along with the MTX and will be taking celebrex as soon as

the authorization goes through. The rheumy gave her Naprosyn, but it made her

sick so had to change. I am giving her some ibuprofen until we can get the

celebrex. We had the option of starting Remicade, but Kaylee's dad didn't want

to do it. Kaylee hates the Humira shots and I have a difficult time with her. It

is so traumatizing that I am almost ready to just say okay let's do the

Remicade, but I am scared. So here I am asking for your advice and help. What

are the side effects some of your kids have had and how bad is it and such? I

researched it some, but I need to hear from parents that their kids do Remicade

or have done it. I also need to know if they go on Remicade do they ever go back

to something else when things get better? To top it all off, Kaylee's uveitis is

not good in her right eye. She has 15-20 cells and is doing pred forte 6x a day

and a dilation drop (can

never remember the name)once a day. They have scheduled joint injections for May

3rd. What should I do about the Remicade? I really don't care about what her dad

wants. He and I aren't together and I pretty much handle everything myself

anyway so what he thinks doesn't really matter to me. Sounds mean I know, but

that's just the way it is. I need your help! I need some feedback from the pros.

I know this is long, but I need help and I need to have an outlet for all this

frustration and depression I am having from all this at once. It's like finding

out for the first time all over again. Kaylee had done so well for over a year

and the Uveitis had been quiet for a year and a half or more. I keep blaming

myself somewhat too b/c I had missed some shots and feel like it is my fault

that she is in pain and suffering so much. I also need to know how to keep her

off her legs for a while as the dr. ordered so maybe she can go back to playing

ball and dancing; as

of last Tuesday, she is not allowed to play ball or dance until further notice.

She was using her crutches some,but b/c the ankle is hurting as bad won't use

them. What do I do to get through to her how important it is for her to do as

the dr. said so things won't get worse? I just want to runaway or just crawl in

a hole and stay there until it's all better, but I know I can't do that. I have

to be strong for Kaylee. I hope you all can help me in this dilemma and help

ease my anxiety over this.

Thanks for all the information I have gained from this site. Although I do not

participate regularly, I read the posts daily.

Thanks for being a great group and giving me hope.

Kaylee, ext. Pauci, Uveitis, ADHD, ODD

age 8 diagnosed at age 2

[Guest guest]

I am sorry you are going through all of this.  My daughter is on Remicade and

it

has worked great for er.  We now go every 6 -7 weeks for an infusion.  No side

effects at all.  She feels better right after the infusion.  (maybe mental but

who cares)  During the infusion we  lay games or she does her homework or we

sleep!  My daughter s older than yours bu had the choice and she choose

this over the painful Humaria shots!  Ask your daughter it is her body and she

is getting to the age where she can be told the pros and cons of each and hve

her discuss it with the doctor and you. 

Maureen

________________________________

From: Amy Spurger <mom2anz@...>

" " < >

Sent: Sun, April 24, 2011 4:38:46 PM

Subject: Re: Frustrated and Depressed

 

I have no advise for you, I just wanted to tell you I'm so sorry she is

having so many problems right now.  I will keep Kaylee in my prayers that she

gets through this flair quickly.

Amy mom to Avery 17 systemic

________________________________

From: ttownyvonne <maydo65@...>

Sent: Sunday, April 24, 2011 1:07 AM

Subject: Re: Frustrated and Depressed

 

Hi everyone! I haven't posted in a while and don't post often. The last time I

posted, Kaylee was scheduled for a comprehensive testing. The results came back

and on top of having JA, Uveitis, being ADHD and ODD, she is suffering from PTSD

which is causing extreme anxiety and depression. So now I am trying to deal with

that and she has been given an antidepressant to help and goes to therapy as

well. Now, just this past week, Kaylee's ankle started hurting at her softball

game and she had to sit out the last inning. It looked bad and then the next

morning, her left knee was swollen and hot. I made the call to the rheumy and

got her in that afternoon. I couldn't believe it!So we went to Duke and it was

worse than I expected. Not only was her right ankle and left knee bad, but both

ankles and knees along with some issues going on with her right wrist. So, she

had been backed off Humira to doing it once every 4 weeks along with the MTX

weekly. Now she has

to have Humira weekly along with the MTX and will be taking celebrex as soon as

the authorization goes through. The rheumy gave her Naprosyn, but it made her

sick so had to change. I am giving her some ibuprofen until we can get the

celebrex. We had the option of starting Remicade, but Kaylee's dad didn't want

to do it. Kaylee hates the Humira shots and I have a difficult time with her. It

is so traumatizing that I am almost ready to just say okay let's do the

Remicade, but I am scared. So here I am asking for your advice and help. What

are the side effects some of your kids have had and how bad is it and such? I

researched it some, but I need to hear from parents that their kids do Remicade

or have done it. I also need to know if they go on Remicade do they ever go back

to something else when things get better? To top it all off, Kaylee's uveitis is

not good in her right eye. She has 15-20 cells and is doing pred forte 6x a day

and a dilation drop (can

never remember the name)once a day. They have scheduled joint injections for May

3rd. What should I do about the Remicade? I really don't care about what her dad

wants. He and I aren't together and I pretty much handle everything myself

anyway so what he thinks doesn't really matter to me. Sounds mean I know, but

that's just the way it is. I need your help! I need some feedback from the pros.

I know this is long, but I need help and I need to have an outlet for all this

frustration and depression I am having from all this at once. It's like finding

out for the first time all over again. Kaylee had done so well for over a year

and the Uveitis had been quiet for a year and a half or more. I keep blaming

myself somewhat too b/c I had missed some shots and feel like it is my fault

that she is in pain and suffering so much. I also need to know how to keep her

off her legs for a while as the dr. ordered so maybe she can go back to playing

ball and dancing; as

of last Tuesday, she is not allowed to play ball or dance until further notice.

She was using her crutches some,but b/c the ankle is hurting as bad won't use

them. What do I do to get through to her how important it is for her to do as

the dr. said so things won't get worse? I just want to runaway or just crawl in

a hole and stay there until it's all better, but I know I can't do that. I have

to be strong for Kaylee. I hope you all can help me in this dilemma and help

ease my anxiety over this.

Thanks for all the information I have gained from this site. Although I do not

participate regularly, I read the posts daily.

Thanks for being a great group and giving me hope.

Kaylee, ext. Pauci, Uveitis, ADHD, ODD

age 8 diagnosed at age 2