Re: Change of diagnosis...again?

[Guest guest]

Jo

Although Rob was HLA-B27 Positive, keep in mind that a child can test negative

yet still have enesthetis-related arthritis or spondyloarthropathy.

Rob did have bilateral hip and knee involvement. Enbrel was magic for him and

got him to remission.

Please keep us posted and let us know. I'm sure Michele will chime in, was

negative but did have spondy.

and Rob 20 JAS (will be 21 in April, like dear Josh!)

Change of diagnosis...again?

> G'day all, I thought I posted this yesterday, but it hasn't

> shown up so

> I'll try again.

>

> Following on from my recent 'back on the horse' comments, I feel

> like I

> may be getting bucked off again.

>

> I'll try to be brief:

>

> Bayly saw a different doctor yesterday who after speaking with Bay's

> regular Paed Rheumy, has ordered blood tests to check for HLA-

> B27. As

> far as we know it hasn't been checked before. The thinking

> is that

> " maybe " Bayly " might " in fact have Enthesitis-Related JIA,

> mainly due to

> his hip and neck involvement. Hips aren't commonly

> involved in

> Pauci/Oligo/Extended oligo. Nor is symmetrical joint

> involvement (Bay

> has both wrists, both elbows, both knees, both TMJs).

>

> See, Bayly has NEVER followed the text books for his " supposed "

> type of

> JIA. He was originally diagnosed with pauci, then changed to

> oligo/extended oligo. There was even a wee time they

> considered and

> consequently ruled out Psoriatic JIA, due to the funny little

> rashes/skin involvement Bayly gets from time to time- usually

> around his

> hands/arms. His bloods are not consistent with Systemic,

> which was

> considered a couple of years back.

>

> Geez!

>

> We won't know anything more until he has another blood test, but since

> both the kids got flu shots yesterday I figured one needle was enough

> for the day.

>

> Any of this sound familiar to anyone?

>

> Jo

> Bayly, 7, ??? JIA

>

> PS: Now that he has " officially failed Methotrexate " , and

> has at least

> 3 major joints in active flare (shoulder, wrist, and lord knows

> how many

> joints in the neck) Bayly moves closer to starting Enbrel- April

> hopefully.

> *sigh* so close, and yet so far...

>

>

>

[Guest guest]

Hi Jo,

I am so sorry that you have to wait for enbrel. It isn't fair or

just to make your son wait in pain, but that is only my humble

opinion. And that is so tough for a momma to see a child in pain

like that. You will be in my prayers. (n, 21, systemic)

On Mar 18, 2010, at 11:25 PM, joking70 wrote:

> G'day all, I thought I posted this yesterday, but it hasn't shown

> up so

> I'll try again.

>

> Following on from my recent 'back on the horse' comments, I feel

> like I

> may be getting bucked off again.

>

> I'll try to be brief:

>

> Bayly saw a different doctor yesterday who after speaking with Bay's

> regular Paed Rheumy, has ordered blood tests to check for HLA-B27. As

> far as we know it hasn't been checked before. The thinking is that

> " maybe " Bayly " might " in fact have Enthesitis-Related JIA, mainly

> due to

> his hip and neck involvement. Hips aren't commonly involved in

> Pauci/Oligo/Extended oligo. Nor is symmetrical joint involvement (Bay

> has both wrists, both elbows, both knees, both TMJs).

>

> See, Bayly has NEVER followed the text books for his " supposed "

> type of

> JIA. He was originally diagnosed with pauci, then changed to

> oligo/extended oligo. There was even a wee time they considered and

> consequently ruled out Psoriatic JIA, due to the funny little

> rashes/skin involvement Bayly gets from time to time- usually

> around his

> hands/arms. His bloods are not consistent with Systemic, which was

> considered a couple of years back.

>

> Geez!

>

> We won't know anything more until he has another blood test, but since

> both the kids got flu shots yesterday I figured one needle was enough

> for the day.

>

> Any of this sound familiar to anyone?

>

> Jo

> Bayly, 7, ??? JIA

>

> PS: Now that he has " officially failed Methotrexate " , and has at least

> 3 major joints in active flare (shoulder, wrist, and lord knows how

> many

> joints in the neck) Bayly moves closer to starting Enbrel- April

> hopefully.

> *sigh* so close, and yet so far...

>

>

[Guest guest]

Of course Michele will chime in! LOL! Good to " see " you posting . I hope

all is well with you and yours. Send a Rob update when you can.

Jo - as said, is negative yet diagnosed with

spondyloarthropy/spondylitis. He was diagnosed based on symptoms. He did do well

on mtx but it sounds like Bayly needs something else for his symptoms. Can Bayly

touch his toes? That is a simple test the dr would do on Chris. If not, that is

a sign.

Just a thought - as one rheumy explained about we know something

inflammatory/auto immune is going on. We may not be able to give it an exact

name (for example, when orders were written up the dr would alternately use

anklosing spondilitis or spondyloarthropy on the paper work and they are

technically different diseases) yet the treatments are essentially the same. You

are trying to avoid joint destruction, spinal fusion and decrease pain. When we

started this journey was diagnosed with pauci, but as often happens the

diagnosis was changed. As more definitive symptoms appeared, it became obvious

his pain and inflammation were more in his tendons than the joints alone. It is

common for kids to have a change of diagnosis or have something added to it. I

sure hope Bayly can get approved for the Enbrel and that it works as well for

him as it has for Rob and others.

Keep us posted, Michele ( 22, spondy)

________________________________

From: [mailto: ] On Behalf Of

and Schulz

Sent: Friday, March 19, 2010 6:24 AM

Subject: Re: Change of diagnosis...again?

Jo

Although Rob was HLA-B27 Positive, keep in mind that a child can test negative

yet still have enesthetis-related arthritis or spondyloarthropathy.

Rob did have bilateral hip and knee involvement. Enbrel was magic for him and

got him to remission.

Please keep us posted and let us know. I'm sure Michele will chime in, was

negative but did have spondy.

and Rob 20 JAS (will be 21 in April, like dear Josh!)

Change of diagnosis...again?

<mailto: %40>

> G'day all, I thought I posted this yesterday, but it hasn't

> shown up so

> I'll try again.

>

> Following on from my recent 'back on the horse' comments, I feel

> like I

> may be getting bucked off again.

>

> I'll try to be brief:

>

> Bayly saw a different doctor yesterday who after speaking with Bay's

> regular Paed Rheumy, has ordered blood tests to check for HLA-

> B27. As

> far as we know it hasn't been checked before. The thinking

> is that

> " maybe " Bayly " might " in fact have Enthesitis-Related JIA,

> mainly due to

> his hip and neck involvement. Hips aren't commonly

> involved in

> Pauci/Oligo/Extended oligo. Nor is symmetrical joint

> involvement (Bay

> has both wrists, both elbows, both knees, both TMJs).

>

> See, Bayly has NEVER followed the text books for his " supposed "

> type of

> JIA. He was originally diagnosed with pauci, then changed to

> oligo/extended oligo. There was even a wee time they

> considered and

> consequently ruled out Psoriatic JIA, due to the funny little

> rashes/skin involvement Bayly gets from time to time- usually

> around his

> hands/arms. His bloods are not consistent with Systemic,

> which was

> considered a couple of years back.

>

> Geez!

>

> We won't know anything more until he has another blood test, but since

> both the kids got flu shots yesterday I figured one needle was enough

> for the day.

>

> Any of this sound familiar to anyone?

>

> Jo

> Bayly, 7, ??? JIA

>

> PS: Now that he has " officially failed Methotrexate " , and

> has at least

> 3 major joints in active flare (shoulder, wrist, and lord knows

> how many

> joints in the neck) Bayly moves closer to starting Enbrel- April

> hopefully.

> *sigh* so close, and yet so far...

>

>

>

[Guest guest]

Jo,

So sorry to hear Bayley is still waiting for his meds. Poor kid, poor mom!

has been diagnosed as spondy from the start, we just haven't pinned

down which kind. She's never been tested for the HLB-27 thing. In the past,

our Rheumy has run into insurance trouble for those that test positive and she

said it wouldn't change her treatment at all if Kat was positive or negative.

Like Bayley, Kat is affected symetrically most of the time (although one side is

often worse than the other). Her primary issues are her feet, ankles, knees,

hips, back and wrists, but everything else likes to jump in when she gets really

bad. Kat has also had about 1/2 dozen or so different rashes when she flares.

Kat too was/is on MTX. It definately helped, but not enough. We tried to up

her dose a few times, but her liver didn't like it. She's now been on both MTX

and Enbrel injections for about 8 months and is doing so much better - although

still not as good as I'd like. Like I said before, I wish so much I could ship

you some of Kat's Enbrel on the sly. I really hope it comes thru for Bayley

soon. I think we waited about 1 month to get Kat started and I was so angry

that she had to wait. I guess we were pretty lucky! Good luck with everything.

Kirsten, mom to , 5, spondy

>

> Of course Michele will chime in! LOL! Good to " see " you posting . I hope

all is well with you and yours. Send a Rob update when you can.

>

> Jo - as said, is negative yet diagnosed with

spondyloarthropy/spondylitis. He was diagnosed based on symptoms. He did do well

on mtx but it sounds like Bayly needs something else for his symptoms. Can Bayly

touch his toes? That is a simple test the dr would do on Chris. If not, that is

a sign.

>

> Just a thought - as one rheumy explained about we know something

inflammatory/auto immune is going on. We may not be able to give it an exact

name (for example, when orders were written up the dr would alternately use

anklosing spondilitis or spondyloarthropy on the paper work and they are

technically different diseases) yet the treatments are essentially the same. You

are trying to avoid joint destruction, spinal fusion and decrease pain. When we

started this journey was diagnosed with pauci, but as often happens the

diagnosis was changed. As more definitive symptoms appeared, it became obvious

his pain and inflammation were more in his tendons than the joints alone. It is

common for kids to have a change of diagnosis or have something added to it. I

sure hope Bayly can get approved for the Enbrel and that it works as well for

him as it has for Rob and others.

>

> Keep us posted, Michele ( 22, spondy)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> ________________________________

> From: [mailto: ] On Behalf Of

and Schulz

> Sent: Friday, March 19, 2010 6:24 AM

>

> Subject: Re: Change of diagnosis...again?

>

>

>

> Jo

> Although Rob was HLA-B27 Positive, keep in mind that a child can test negative

yet still have enesthetis-related arthritis or spondyloarthropathy.

> Rob did have bilateral hip and knee involvement. Enbrel was magic for him and

got him to remission.

> Please keep us posted and let us know. I'm sure Michele will chime in, Chris

was negative but did have spondy.

> and Rob 20 JAS (will be 21 in April, like dear Josh!)

>

> Change of diagnosis...again?

> <mailto: %40>

>

> > G'day all, I thought I posted this yesterday, but it hasn't

> > shown up so

> > I'll try again.

> >

> > Following on from my recent 'back on the horse' comments, I feel

> > like I

> > may be getting bucked off again.

> >

> > I'll try to be brief:

> >

> > Bayly saw a different doctor yesterday who after speaking with Bay's

> > regular Paed Rheumy, has ordered blood tests to check for HLA-

> > B27. As

> > far as we know it hasn't been checked before. The thinking

> > is that

> > " maybe " Bayly " might " in fact have Enthesitis-Related JIA,

> > mainly due to

> > his hip and neck involvement. Hips aren't commonly

> > involved in

> > Pauci/Oligo/Extended oligo. Nor is symmetrical joint

> > involvement (Bay

> > has both wrists, both elbows, both knees, both TMJs).

> >

> > See, Bayly has NEVER followed the text books for his " supposed "

> > type of

> > JIA. He was originally diagnosed with pauci, then changed to

> > oligo/extended oligo. There was even a wee time they

> > considered and

> > consequently ruled out Psoriatic JIA, due to the funny little

> > rashes/skin involvement Bayly gets from time to time- usually

> > around his

> > hands/arms. His bloods are not consistent with Systemic,

> > which was

> > considered a couple of years back.

> >

> > Geez!

> >

> > We won't know anything more until he has another blood test, but since

> > both the kids got flu shots yesterday I figured one needle was enough

> > for the day.

> >

> > Any of this sound familiar to anyone?

> >

> > Jo

> > Bayly, 7, ??? JIA

> >

> > PS: Now that he has " officially failed Methotrexate " , and

> > has at least

> > 3 major joints in active flare (shoulder, wrist, and lord knows

> > how many

> > joints in the neck) Bayly moves closer to starting Enbrel- April

> > hopefully.

> > *sigh* so close, and yet so far...

> >

> >

> >

>

>

[Guest guest]

Kirsten, , Robbin, , Michele, I thank you all SO much for the

quick and detailed replies. Especially for the offer to ship over some

Enbrel on the sly! []

I really appreciate the advice and experience here, and just the total

love and support you can see in action any time anyone has a need! You

don't see that kind of thing too many places.

It's just so darn frustrating, and confusing, and definitely sad to see

our beautiful brave little boy keep going through things.

I'm sure others have been told the same thing, but when Bayly was given

the diagnosis of pauci/oligo, we were told it was the " best " type of JIA

to have. Ha! As if ANY type is good, right?! But, given that it's

supposedly the least amount of joints affected, without the worries of

skin and internal organ involvement, nor the risk of it continuing into

adulthood (isn't it about 70-80% 'grow out of it' by puberty?) we were

oddly comforted by that.

Then to have the diagnosis " extended " , see more and more joints become

inflamed, with all the other strange and painful stuff thrown in for

good measure. And to have the diagnosis questioned and possibly changed

over and over, well, it's like getting sucker-punched all over again,

and having to find some answers. Hardest one is: " Why do I have to have

arthritis? Why won't it just go away? " []

I feel reassured though, that the treatment for Enthesitis-Related JIA

is pretty much the same as we're looking at now. I also feel optimistic

that these Biologics work so well for so many others.

Oh and Bayly can't touch his toes. Nowhere near them in fact, says it

hurts his neck to try.

Jo (who will also be 21 in April...with 19 years' experience [] )

Bayly, 7, extended oligo

> >

> > Of course Michele will chime in! LOL! Good to " see " you posting

. I hope all is well with you and yours. Send a Rob update when you

can.

> >

> > Jo - as said, is negative yet diagnosed with

spondyloarthropy/spondylitis. He was diagnosed based on symptoms. He did

do well on mtx but it sounds like Bayly needs something else for his

symptoms. Can Bayly touch his toes? That is a simple test the dr would

do on Chris. If not, that is a sign.

> >

> > Just a thought - as one rheumy explained about we know

something inflammatory/auto immune is going on. We may not be able to

give it an exact name (for example, when orders were written up the dr

would alternately use anklosing spondilitis or spondyloarthropy on the

paper work and they are technically different diseases) yet the

treatments are essentially the same. You are trying to avoid joint

destruction, spinal fusion and decrease pain. When we started this

journey was diagnosed with pauci, but as often happens the

diagnosis was changed. As more definitive symptoms appeared, it became

obvious his pain and inflammation were more in his tendons than the

joints alone. It is common for kids to have a change of diagnosis or

have something added to it. I sure hope Bayly can get approved for the

Enbrel and that it works as well for him as it has for Rob and others.

> >

> > Keep us posted, Michele ( 22, spondy)

> >

> > ________________________________

> > From: [mailto: ] On

Behalf Of and Schulz

> > Sent: Friday, March 19, 2010 6:24 AM

> >

> > Subject: Re: Change of diagnosis...again?

> >

> > Jo

> > Although Rob was HLA-B27 Positive, keep in mind that a child can

test negative yet still have enesthetis-related arthritis or

spondyloarthropathy.

> > Rob did have bilateral hip and knee involvement. Enbrel was magic

for him and got him to remission.

> > Please keep us posted and let us know. I'm sure Michele will chime

in, was negative but did have spondy.

> > and Rob 20 JAS (will be 21 in April, like dear Josh!)>

[Guest guest]

Hmmmm. The the big 40 , eh? You are getting up there young lady.

(n, 21, systemic)

On Mar 19, 2010, at 4:59 PM, joking70 wrote:

> Kirsten, , Robbin, , Michele, I thank you all SO much for

> the

> quick and detailed replies. Especially for the offer to ship over some

> Enbrel on the sly! []

>

> I really appreciate the advice and experience here, and just the total

> love and support you can see in action any time anyone has a need! You

> don't see that kind of thing too many places.

>

> It's just so darn frustrating, and confusing, and definitely sad to

> see

> our beautiful brave little boy keep going through things.

>

> I'm sure others have been told the same thing, but when Bayly was

> given

> the diagnosis of pauci/oligo, we were told it was the " best " type

> of JIA

> to have. Ha! As if ANY type is good, right?! But, given that it's

> supposedly the least amount of joints affected, without the worries of

> skin and internal organ involvement, nor the risk of it continuing

> into

> adulthood (isn't it about 70-80% 'grow out of it' by puberty?) we were

> oddly comforted by that.

>

> Then to have the diagnosis " extended " , see more and more joints become

> inflamed, with all the other strange and painful stuff thrown in for

> good measure. And to have the diagnosis questioned and possibly

> changed

> over and over, well, it's like getting sucker-punched all over again,

> and having to find some answers. Hardest one is: " Why do I have to

> have

> arthritis? Why won't it just go away? " []

>

> I feel reassured though, that the treatment for Enthesitis-Related JIA

> is pretty much the same as we're looking at now. I also feel

> optimistic

> that these Biologics work so well for so many others.

>

> Oh and Bayly can't touch his toes. Nowhere near them in fact, says it

> hurts his neck to try.

>

> Jo (who will also be 21 in April...with 19 years' experience [] )

> Bayly, 7, extended oligo

>

>

> > >

> > > Of course Michele will chime in! LOL! Good to " see " you posting

> . I hope all is well with you and yours. Send a Rob update

> when you

> can.

> > >

> > > Jo - as said, is negative yet diagnosed with

> spondyloarthropy/spondylitis. He was diagnosed based on symptoms.

> He did

> do well on mtx but it sounds like Bayly needs something else for his

> symptoms. Can Bayly touch his toes? That is a simple test the dr would

> do on Chris. If not, that is a sign.

> > >

> > > Just a thought - as one rheumy explained about we know

> something inflammatory/auto immune is going on. We may not be able to

> give it an exact name (for example, when orders were written up the dr

> would alternately use anklosing spondilitis or spondyloarthropy on the

> paper work and they are technically different diseases) yet the

> treatments are essentially the same. You are trying to avoid joint

> destruction, spinal fusion and decrease pain. When we started this

> journey was diagnosed with pauci, but as often happens the

> diagnosis was changed. As more definitive symptoms appeared, it became

> obvious his pain and inflammation were more in his tendons than the

> joints alone. It is common for kids to have a change of diagnosis or

> have something added to it. I sure hope Bayly can get approved for the

> Enbrel and that it works as well for him as it has for Rob and others.

> > >

> > > Keep us posted, Michele ( 22, spondy)

> > >

> > > ________________________________

> > > From: [mailto:jra-

> list ] On

> Behalf Of and Schulz

> > > Sent: Friday, March 19, 2010 6:24 AM

> > >

> > > Subject: Re: Change of diagnosis...again?

> > >

> > > Jo

> > > Although Rob was HLA-B27 Positive, keep in mind that a child can

> test negative yet still have enesthetis-related arthritis or

> spondyloarthropathy.

> > > Rob did have bilateral hip and knee involvement. Enbrel was magic

> for him and got him to remission.

> > > Please keep us posted and let us know. I'm sure Michele will chime

> in, was negative but did have spondy.

> > > and Rob 20 JAS (will be 21 in April, like dear Josh!)>

>

>

[Guest guest]

[]

Jx

> > > >

> > > > Of course Michele will chime in! LOL! Good to " see " you posting

> > . I hope all is well with you and yours. Send a Rob update

> > when you

> > can.

> > > >

> > > > Jo - as said, is negative yet diagnosed with

> > spondyloarthropy/spondylitis. He was diagnosed based on symptoms.

> > He did

> > do well on mtx but it sounds like Bayly needs something else for his

> > symptoms. Can Bayly touch his toes? That is a simple test the dr

would

> > do on Chris. If not, that is a sign.

> > > >

> > > > Just a thought - as one rheumy explained about we know

> > something inflammatory/auto immune is going on. We may not be able

to

> > give it an exact name (for example, when orders were written up the

dr

> > would alternately use anklosing spondilitis or spondyloarthropy on

the

> > paper work and they are technically different diseases) yet the

> > treatments are essentially the same. You are trying to avoid joint

> > destruction, spinal fusion and decrease pain. When we started this

> > journey was diagnosed with pauci, but as often happens the

> > diagnosis was changed. As more definitive symptoms appeared, it

became

> > obvious his pain and inflammation were more in his tendons than the

> > joints alone. It is common for kids to have a change of diagnosis or

> > have something added to it. I sure hope Bayly can get approved for

the

> > Enbrel and that it works as well for him as it has for Rob and

others.

> > > >

> > > > Keep us posted, Michele ( 22, spondy)

> > > >

> > > > ________________________________

> > > > From: [mailto:jra-

> > list ] On

> > Behalf Of and Schulz

> > > > Sent: Friday, March 19, 2010 6:24 AM

> > > >

> > > > Subject: Re: Change of diagnosis...again?

> > > >

> > > > Jo

> > > > Although Rob was HLA-B27 Positive, keep in mind that a child can

> > test negative yet still have enesthetis-related arthritis or

> > spondyloarthropathy.

> > > > Rob did have bilateral hip and knee involvement. Enbrel was

magic

> > for him and got him to remission.

> > > > Please keep us posted and let us know. I'm sure Michele will

chime

> > in, was negative but did have spondy.

> > > > and Rob 20 JAS (will be 21 in April, like dear Josh!)>

> >

> >

[Guest guest]

Your poor little guy...it is so cruel that the system that should be helping him

is forcing him to suffer. I hope and pray that he is able to start the Enbrel

very soon...April starts this week! I also hope he responds as well as my

little guy did to the Enbrel.

and , 6, poly (04/09) plus a bunch of other stuff

Sent from my iPhone