Re: Mixed feelings - info needed

[Guest guest]

Cheryl,

Sounds like you had a really tough day. I'm glad to hear you have some answers

but can totally understand your frustration. My advice is to call the clinic and

ask to speak to the nurse. She can review what was said yesterday and/or send

you the chart note for you to refer to. The nurse is an extremely valuable

person in a rheumy office to get to know to answer your questions and are used

to calls from famly etc.

e

From: c.vanallen <c.vanallen@...>

Subject: Mixed feelings - info needed

Date: Wednesday, May 11, 2011, 8:33 AM

 

Good morning all,

Today I have mixed feelings. After two years of uncertainty, we have definition.

My daughter had been sero-negative, mild to moderate pain in multiple joints

that we thought had been controlled by medicine. To the point where the doctors

were not completely convinced it was arthritis. After her doctor passing away,

we had the first appointment yesterday with the new rheum. I appreciated his

thoroughness and direct yet fair approach. He flat out said that by looking at

the previous notes, he was prepared to find a child without arthritis. Expected

possibly more joint pain from her celiac. He listened and agreed that generally

that only comes when a celiac is ingesting gluten. The pain tends to go away if

completely gluten free. He was fair in listening that this child does not cheat,

she gets far too sick, too quickly and for a long time. Then, he started his

exam. He found a contracture in one knee with leg lengthening swelling and mild

warmth. The other

knee seemed swollen as well with some " thickening " he said. In his opinion,

this only happens from arthritis and has been going on for some time. He leans

towards spondylo and/or psoriatic typing.

So, now despite vagueness in proof/symptoms, we have formal arthritis. While I

am glad to finally have some confirmation of what we are dealing with, the

magnitude I find overwhelming me today. Contractures. Damn. She is just turning

into a teenager. She should not have to deal with this.I know this is nothing

new here. I just had to get it out so I can be stronger for her.

[deep breath out] Ok. Yesterday was a lot to take in. In regards to the

contracture and over-growing limb..... I remember him saying something about an

ortho consult and ways to deal with it. Being a bit time critical as she her

body is entering the last stage of growth before adulthood. Something about

staple-like things and the potential (in extreme cases) of them having to cause

trauma to the (?) growth plates? As I sit here, I am realizing how little of

that I absorbed. Can someone with some experience in this help explain it to me?

Thanks,

Cheryl

[Guest guest]

This is the place to vent Cheryl. We do know how you are feeling - on one hand

relief at a diagnosis, but anger at the diagnosis. So much nicer if the dr said

it's nothing, don't worry and you could believe it.

Unfortunately, while I do have some knowledge of the spondy thing, I do not know

about contractures. I do recall some children here dealing with them and I am

sure someone will post. I agree with e about calling the nurse for an

explanation. Do not feel silly or anything. What you heard yesterday was a lot

to take in and I am sure the nurse will be able to decipher it for you, or at

least can take your questions to the dr and you can get it clarified.

Let us know how things are going, Hugs, Michele ( 24, spondy)

From: [mailto: ] On Behalf Of

c.vanallen

Sent: Wednesday, May 11, 2011 10:34 AM

Subject: Mixed feelings - info needed

Good morning all,

Today I have mixed feelings. After two years of uncertainty, we have definition.

My daughter had been sero-negative, mild to moderate pain in multiple joints

that we thought had been controlled by medicine. To the point where the doctors

were not completely convinced it was arthritis. After her doctor passing away,

we had the first appointment yesterday with the new rheum. I appreciated his

thoroughness and direct yet fair approach. He flat out said that by looking at

the previous notes, he was prepared to find a child without arthritis. Expected

possibly more joint pain from her celiac. He listened and agreed that generally

that only comes when a celiac is ingesting gluten. The pain tends to go away if

completely gluten free. He was fair in listening that this child does not cheat,

she gets far too sick, too quickly and for a long time. Then, he started his

exam. He found a contracture in one knee with leg lengthening swelling and mild

warmth. The other knee seemed swollen a s well with some " thickening " he said.

In his opinion, this only happens from arthritis and has been going on for some

time. He leans towards spondylo and/or psoriatic typing.

So, now despite vagueness in proof/symptoms, we have formal arthritis. While I

am glad to finally have some confirmation of what we are dealing with, the

magnitude I find overwhelming me today. Contractures. Damn. She is just turning

into a teenager. She should not have to deal with this.I know this is nothing

new here. I just had to get it out so I can be stronger for her.

[deep breath out] Ok. Yesterday was a lot to take in. In regards to the

contracture and over-growing limb..... I remember him saying something about an

ortho consult and ways to deal with it. Being a bit time critical as she her

body is entering the last stage of growth before adulthood. Something about

staple-like things and the potential (in extreme cases) of them having to cause

trauma to the (?) growth plates? As I sit here, I am realizing how little of

that I absorbed. Can someone with some experience in this help explain it to me?

Thanks,

Cheryl