& Aundrea

[Guest guest]

Hi ,

I am so sorry to hear that Aundrea is continuing to have some painful

arthritis symptoms. I know how difficult that can be, for a parent who

wants nothing more than for their child to be feeling well and enjoying

life. I hope that when you meet with the new rheumatologist that both

you and your husband, and Aundrea, will feel comfortable with him or her

and that you'll be able to figure out a treatment plan that will be

effective at not only relieving her pain and discomfort but helping to

prevent joint deterioration, as well.

That was always one of my main concerns ~ that while Josh was a young

child that I do everything within my power to help prevent joint

destruction that he'd need to deal with for the remainder of his life.

If we have a chance to prevent or even just postpone irreversible

damage, at least until they are of legal age and responsible for and in

charge of their own health care, I felt it was my responsibility to take

the risks and try to be proactive. I didn't want him to feel that I was

too cautious and allowed something that might have been prevented to

occur. We've talked about this. His arthritis was aggressive. Left

untreated, he'd probably be in a wheelchair today. Or worse.

On the Stills List, people used to say that arthritis can be an

invisible disease. On the outside, sometimes a person looks just fine.

No outwardly noticeable hints of all the destruction that's going on

quietly, or not so quietly, within. Eventually, as time goes on, the

disease often does become noticeable. By then, though, it's hard to do

too much other than joint replacement surgeries or using adaptive

strategies. That's why I've opted for my son to use the frequently

discussed arthritis meds that are available nowadays. It's still hard

for doctors to figure out who has the most aggressive arthritis and who

will be at highest risk from this potentially disabling disease. While

one person's arthritis can be controlled with a simple treatment plan,

another might need a combination of very powerful medicines. It's easy

to monitor someone while taking a medication though, and if they have a

bad reaction or don't tolerate it well you can always discontinue the

treatment and hopefully find something else that works.

Over time, though not in the beginning, an xray will often pick up

abnormal bone development due to arthritis. Many times they'll want to

take xrays in the beginning so they have a baseline by which to measure

changes, later on. In the case of chest pain, they want to be sure that

the child doesn't have pneumonia or fractured ribs, for instance, before

they diagnose or treat something else - like costochondritis. So they're

used to rule out other diagnosis and as markers of arthritis activity.

I hope today will be a good day for Aundrea.

Take Care,

Georgina

sonia dykhuizen wrote:

> Hi ,

> Well, I learned something new on the board today. I

> didn't even realize that arthritis could effect your

> sternum.

> I hope that you get some answers today from the

> rheumy. Maybe the methotrexate would be helpful.

> Seems like its working well for many other kids.

> How is the homebound tutoring going? I was glad to

> hear that n at least had some laughter yesterday.

> I am sure that helped your spirits as well.

>

> Aundrea developed severe wrist pain last night along

> with other joint pain and sore throat. I wrapped her

> wrist with an ace bandage and she said that it didn't

> take away the pain but made her less nervous about it

> getting bumped. Its her right hand so I doubt that

> she will be able to do any writing at school today.

>

> I will be so glad to meet with her new rheumy next

> month. I don't want to have to call the old rheumy

> for med changes in case the new rheumy wants to do

> something different. It will be good to get

> everything settled and to have a dr. to call during

> flares.

>

> I hope n feels better today. I am praying for

> you guys.

>

> P.S. How can they tell that there is arthritis from an

> x-ray. Have they x-rayed any other joints? I am

> curious about if Aundrea has had any damage since I

> don't really see much in the way of inflammation?

>

> Aundrea has had chest pain a couple of times and I

> worried about pericarditis or pleuisy because they say

> that can be a problem for systemics. Her chest pain

> subsided fairly quickly so no testing was done. Did

> they have to do any test to rule this out for n

> or were they certain of the sternum problems right

> away.

>

> God Bless,

> (mom to Aundrea age 8 systemic jra)