Frustrated and Depressed

[Guest guest]

Angie, the scientist who discovered the HBL-A27 gene used to belong to this

group and said that it was possible to not have the gene and still have Reiters

and AS. As for your hip you probably need a course of steroids until it

settles down. Ask your General Practioner for help.

[Guest guest]

Angie,

I'm so sorry about your frustrations and your pain. It's easy for someone

who isn't experiencing the pain and disability to say just live with it.

That's rarely the best solution.

The genetic test is not 100%. That is, if you don't have the HLA-B27

genetic marker, it doesn't mean that you definitively could not have

reiter's syndrome or one of the other spondyloarthropathies. It just makes

it less likely. It's an indicator and one piece of the puzzle rather than a

definite yes/no type of thing.

Rheumatic diseases are hard to diagnose and typically the diagnosis does

take time and trial and error. The rheumy's approach of giving you

sulfasalazine and seeing if it works does not sound like a bad plan to me.

It will help with the diagnosis. If your sacral pain is greatly relieved by

sulfasalazine, then that will strongly suggest that the initial diagnosis of

Reiter's may been right (or another related spondy. disease). If the

sulfasalazine has no effect, then they might want to do other tests in a

different direction.

Sulfasalazine takes some time to work because it is a disease-modifying

anti-rheumatic drug rather than just a symptom-relieving drug. I really,

really hope it helps you. Give it some time. As long as this rheumy. keeps

trying to find the answers and doesn't minimize your symptoms, maybe you

will want to stick with her a little longer.

Good luck! And, please keep posting.

God Bless,

Janet in SF

ReA since 1973; diagnosed 1997; HLA-B27+

[Guest guest]

In a message dated 1/14/2004 1:31:12 PM Pacific Standard Time,

guppielpn@... writes:

sulfasalazine 500mg twice a day

It can take a while for this to kick in. So don't give up! But...golly, I

wish the MD would have given you something else to also take until the

Sulfasalazine kicks in.

I am so sorry to hear about your family. I wish there were a way to make

people understand that you ARE trying to live with it... but it would be better

to live with Less of the pain.

Doctors...yes, it can take seeing several before finding one who can

diagnose, treat and believe what you are dealing with. I hardly even recall how

many

we saw before getting a diagnosis, and then how many we saw after the

diagnosis to get answers and appropriate treatment for Adrienne.

I hope you find a doctor and meds that will work for you.

Just a question...Adrienne takes Prozac, she took it along with the

Sulfasalzine way back when she was on that. It is used for pain, not

depression.

Would your doctor consider trying that? The generic doesn't work for pain, for

Adrienne, but the name brand does help.

Just a thought I wanted to share.

I sure hope you get to feeling better soon!

K

[Guest guest]

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]

Sorry I can't help with any of your questions.  But, I wanted you to know that

our family will say a prayer for you and your daughter.  I hope you find your

answers. 

From: ttownyvonne <maydo65@...>

Subject: Frustrated and Depressed

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

 

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 shou! ld 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 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

[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]

,

First--I am sorry you and your little girl are dealing with this. It just really

stinks! As for the Remicaid it is an IV medication that you go to the clinic for

and takes about 6 hours for the first doses. If she does well without any

problems they can move her up to " fast track " where they run the medication in

more quickly. I wouldn't be too worried about the side effects--you are facing

similar ones with the Humira.

My daughter started on Enbrel when it was only available through a study. She

failed that drug. Then switched to Remicaid. It was better than Enbrel but the

more we went the more anxious she became. She ended up crawling into a ball and

we had to call the doc for something to make her relax so they could get the IV

in (and she was over 18 at this point). I know that is not normal--but the

stress of the IV placement just pushed her over the edge so much that she needed

anti-anxiety medication to get the IV in. She just emotionally didn't do well

with it. And it wasn't the most effective medication for her. Yes, it made a

difference and more so than the Enbrel but still wasn't a great medication for

her. She was tired with the infusions and would sleep while at the hospital and

for about the next 24 hours--others I know are practically running down the

halls feeling great afterwards so you just never know how a person will do.

She is currently on Humira and while it does hurt, it is easier on her than the

others were. She does have an extreme needle phobia and had to stop the MTX

injections and switch to oral because she would start vomiting when the

medication was take out of the cupboard. EEK! Poor girl.

Each person is so different in their reactions to medications it is hard to know

what your child will respond to best--not just physically but emotionally. My

daughter has never hit remission but she is at her best place ever with the

Humira.

As for the crutches and staying off the leg--I know your doctor has told you to

use them--but I would not. The goal is to keep a joint mobile and active. If

your daughter is able to do her activities I would let her do so as much as she

can tolerate it. The theory used to be that you should avoid activity, keep the

joint immobilized, but now all the research has proven otherwise--the best thing

is to keep moving, and to keep active. If she can play some, dance some, I

personally would let her. Use the anti-inflammatory prescribed and Tylenol, ice

to the joints when swollen afterwards. I would ask your doctor why he/she

insists on avoiding the activities because all my daughter's various doctors and

therapists have said to keep her moving and allow her to do anything she wants

for as long as she can tolerate it. It may mean that she plays ball one day and

has to relax the next day but let her enjoy everything as much as she can. (Just

my opinion and

experience here).

And it is easy to blame ourselves, to want to scream and run--so so normal. We

as parents want to be able to take the pain from our children and when we can't

it is hard on all of us. I hope that your daugther is up doing all she loves

soon.

e, mom to 'joe' now 24 poly+

From: ttownyvonne <maydo65@...>

Subject: Frustrated and Depressed

Date: Saturday, April 23, 2011, 11:07 PM

 

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 so sorry that Kaylee is having such a tough time. I would love to give

advice, but there isn't lots for me to give. Prayers I can and will give.

My son is on Humira, and had to take it weekly for over a year. He did well on

it. We never had to do Remicade. My aunt started Remicade when it was first

invented. She is in her mid sixties now and started on it in her 40's. I

don't know dates, sorry. She loves it. She says that the IV is small and not a

problem. She has never had any reaction at all. She functions very well.

If you do have to start IV therapy, I would numb the IV site to make it as

painless as possible for a child. If there is difficulty in sticking her, they

could insert a port under her skin. There are ways to make it tolerable, and it

may work wonderfully for her. Stinks to even think about it though.

Keep us updated.

Audra

14, poly 07

Peyton 13, poly 08

>

> 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.