Update on Audrey

September 8, 2006

Well, we are still not doing real well over here with Audrey. As many of you

remember, she was diagnosed with an ear infection a few weeks ago, and then what

was thought to be a UTI over the weekend. They put her on Furdantin (sp?),

which she had to take FOUR times a day. Unfortunately, it was also causing her

to throw up. Last night, she laid on the floor and cried for half an hour

because her back hurt so bad. As as you know, my daughter is not one to

complain about pain, so when she does, we know she's really hurting. So back to

the doctor's we go this morning, and they had to do another urine sample - this

time with a catheter. That was real fun. They also gave us another antibiotic

to try - omnicef. The doctor said our choices were fairly limited because of

the mtx. When we got the preliminary labs back from her urine test, it came

back as having white blood cells and a trace of bacteria. And this is after

almost a week of being on antibiotics to supposedly treat this thing. So we are

now waiting on urine culture again. He also said that it was possible that the

inflammed cells from her ear has traveled down her back and is now causing

inflammation in her back. I'm not really sure what that means or even if I got

it right - I'm getting this info second hand from my hubby.

So we are now back to square one again. Audrey is still complaining that her

back hurts, and is still little miss grump. She's also been complaining that

her wrist is hurting - her left one, the one where all this started. And all 4

of her toes are swollen. My poor girl has been on antibiotics for almost 3

weeks now, and I'm so tired of trying to fight to get them down her. At least

this new one is only twice a day, so that should help. I'm just tired of

fighting this battle with her and arthritis. Sometimes I just want to give up

and not give her her meds and shots. I know others have been fighting this for

longer, but it's starting to wear me down. We've been fighting for over 2 years

straight now, and things have gotten worse instead of better. And then you add

my son's problems on top of hers, and I feel like II'm drowning. I joke that

I'm a walking pharmacy for my kids' medications.

Anyways, time to pick myself up and go back to being strong. Sometimes I just

wish someone could be strong for me.

June 17, 2009

I know it's hard Audrey

My 1st son died of Cancer after a 2 year fight, then my 2nd son is being

assessed for Aspergers and ADHD - and now n=my 3rd child has JRA which we

thought was under control until a flare up 2 weeks ago followed by diagnosis

of Uvetis!!

I was thinking yesterday - will it ever end? Haven't I gone through enough?

But no... it keeps coming

They say - you're only given what you can cope with - what a load of crap!!!

xxxxx

From: [mailto: ] On Behalf

Of son

Sent: 17 June 2009 16:12

JRA List

Subject: Update on Audrey

Yesterday was Audrey's optho and rheumy appointments. According to the

optho, she still has a little bit of inflammation in her left eye (going on

since October when it started in her left eye). So we are still on the

Acular eye drops twice a day and the pred forte once a day. She also has had

a dramatic change in her vision, so we got a new prescription for glasses.

As for the rheumy, he's going to talk to the optho and see if he needs to

increase the strength of the Remicade to try and bring this last little bit

of inflammation under control. Audrey's also missed a couple of days of

school because she was complaining that her feet hurt, and the sitter has

noticed quite a bit of swelling on the ball of her feet. So he's wondering

if arthur has gone into the metatarsal joints of her left foot. She also

most definitely has the sausage toes going on again. Other than that, she's

doing pretty well.

I need to vent a minute. Why can't arthur just go away for a little while!

For heaven's sake, Audrey's only 6 years old! She's on more medications than

she is old! She's on 7 different medications at the age of 6 to control this

stupid arthritis. We've been battling constantly since she was 13 months old

- that's over a 5 year battle now. It makes me wonder if we will ever have a

quiet period with her. She's been through so much at such a young age. She

told me the other day that she doesn't like getting poked, but knows she has

to do it. How sad is that? I'm tired of fighting the battle sometimes. We've

had stormy rainy weather here for almost 2 weeks now, raining every day.

It's been he(* on her. My sweet little girl has been the drama queen with

crying and over the top emotions. I know there's always hope for a

remission, but at this exact moment, I'm not feeling very hopeful for one.

It's been a long battle for her - one I'm not sure we're going to ever

completely win.

D.

mom to Audrey

trying to see her daughter as an arthritis SURVIVOR rather than an arthritis

VICTIM.

__________________________________________________________

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June 17, 2009

I am so sorry Audrey for all your little girl has gone through. It seems like

when things are at their worst, it can only get better. Please hang in there,

your baby hang in there, and perhaps she will turn the corner soon.

Babies/children shouldn't have to deal with pain. I lament for my DD who also

has much pain, although she does get a few days of relief, and no one can really

do anything for her, because we don't know why it is happening. She has a good

neuro that put her on a very expensive pain/neuro med, and hopefully, that will

just get her nerves quieted down, so she can just heal and get over this for

good. I am not holding my breath. I expect her to flare back up any day now.

But, I just keep thinking of new ideas and ways to be proactive, and coming back

to this and other support groups to find more new ideas. One of these days, she

will turn the corner (if this isn't going away altogether this time), and she

can be a normal child again. I am praying for that anyway. And, I pray that for

your DD as well. Kymberli

>

> Yesterday was Audrey's optho and rheumy appointments. According to the optho,

she still has a little bit of inflammation in her left eye (going on since

October when it started in her left eye). So we are still on the Acular eye

drops twice a day and the pred forte once a day. She also has had a dramatic

change in her vision, so we got a new prescription for glasses. As for the

rheumy, he's going to talk to the optho and see if he needs to increase the

strength of the Remicade to try and bring this last little bit of inflammation

under control. Audrey's also missed a couple of days of school because she was

complaining that her feet hurt, and the sitter has noticed quite a bit of

swelling on the ball of her feet. So he's wondering if arthur has gone into the

metatarsal joints of her left foot. She also most definitely has the sausage

toes going on again. Other than that, she's doing pretty well.

>

> I need to vent a minute. Why can't arthur just go away for a little while!

For heaven's sake, Audrey's only 6 years old! She's on more medications than

she is old! She's on 7 different medications at the age of 6 to control this

stupid arthritis. We've been battling constantly since she was 13 months old -

that's over a 5 year battle now. It makes me wonder if we will ever have a

quiet period with her. She's been through so much at such a young age. She

told me the other day that she doesn't like getting poked, but knows she has to

do it. How sad is that? I'm tired of fighting the battle sometimes. We've had

stormy rainy weather here for almost 2 weeks now, raining every day. It's been

he(* on her. My sweet little girl has been the drama queen with crying and over

the top emotions. I know there's always hope for a remission, but at this exact

moment, I'm not feeling very hopeful for one. It's been a long battle for her -

one I'm not sure we're going to ever completely win.

>

> D.

>

> mom to Audrey

>

> trying to see her daughter as an arthritis SURVIVOR rather than an arthritis

VICTIM.

>

> _________________________________________________________________

> Insert movie times and more without leaving Hotmail®.

>

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>

June 17, 2009

All of your posts made me cry. , I'm so sorry that you've had so much pain

to deal with. I truly hope that things continue to get easier for you!!! We

all need a break sometimes.

Val- Bravo!!! I feel your pain, and admire what you accomplished with your

anger and frustration. Your story is awesome!

, I completely understand how you feel. I have spent many nights crying

for my little girl because it just seems so unfair. I often wonder, why not me

instead? Every time that I thing we have a grip on things something else weird

pops up. is 7 now, and she just accepts things with a sigh but no

complaint. I wish I could be as strong and brave as her, which makes me sad as

well. She shouldn't need to be so brave yet! But, then I think of the few

positive things. I have a relationship with my children that most parents

don't. I'm totally honest with them, and I can tell them anything. I couldn't

have before. We tend to appreciate things more now than we did before she got

really sick. I (without realizing it) was very depressed before she was

diagnosed. It forced me to get on the ball and work towards something. We went

back to church. And my whole attitude changed for the better. In some ways her

illness has been a blessing. Everyone treats her like a princess. She's much

happier now, too, actually. It's the little things. I try to find any

positives that I can.. especially on the days that all I want to do is cry. I

wish that I could tell you that things would get better, and know for sure. For

now I'll thank you for the rant!