Re: Back on the horse again

[Guest guest]

Hi Jo,

Poor little man! That is sad to hear of him in such pain. When will

you hear about the enbrel? Has he had an MRI

Of the tmj? You don't want any destruction there.

Take care,

Sent from my iPod

On Mar 5, 2010, at 7:14 PM, " joking70 " <veebeejaygee@...> wrote:

>

> You know how you begin to think you're on top of things, and then it

> all

> falls over?

>

> After about 7 years of this, I thought I was pretty au fait with the

> whole JIA business. Lord knows I've done enough reading, and chatting

> about it!

>

> Well Bayly is now in month 4 of a pretty significant arthritis flare-

> his neck and jaw and hip are all giving him grief (as some of you may

> have seen at Camp Twinkletoes last weekend). Thing is, we can't

> increase any meds until we find out if Bayly is to start the Enbrel

> trial, and it's really tough seeing him in constant pain, yet knowing

> that we can't do a whole lot more about it for the time being just in

> case he gets accepted.

>

> So it was back to physiotherapy last week, and now it's back to

> hydro at

> least once a week, and another round of regular physio and OT as well.

> After 5 years of going twice a week I thought we could manage at home

> (saves time, petrol, arguments), but though Bay now has a spa at

> home he

> can't actually walk around in it, which his hip really needs right

> now.

> His gait is very uneven and awkward, and his posture is terrible. So

> now it's more hydro, a massage twice a day, and ROM exercises at

> least 3

> times daily. Plus painkillers as needed (pretty much every night).

>

> On the 'up' side, Bayly's school athletics carnival is this week, and

> though he did not want to go because some kids make fun of the way he

> runs, he is going to have a special job as a shot put marker

> (hopefully,

> waiting until after the shot put is thrown) so he's excited now.

>

> I had to ask the sportsmaster if they were going to address the issues

> of all the kids at school with 'special needs', and now they have,

> which

> is good. Otherwise they would have just missed out on the day, and

> working parents would have had to make alternative arrangements.

>

> Anyhow, it's good to hear that others are going well, and we're

> looking

> for a little piece of that action for us too!

>

> Jo

>

> Bayly, 7, extended oligo

>

>

[Guest guest]

Jo,

so sorry to hear that things are not going well for Bayly. He has had such a

rough time and you too. We all know the frustration and heartbreak that goes

with not being able to fix our kids. It is bad enough knowing that the troubles

will keep coming but when he heads down that road and is in so much pain and all

you can do is wait, that is just almost too much. I will pray for you all. I

pray that he will be able to start the new med and that it will work wonders for

him soon. I hope he has a wonderful time at the carnival and is the best marker

they have there.

Veri & Jaye 16 poly

Back on the horse again

You know how you begin to think you're on top of things, and then it all

falls over?

After about 7 years of this, I thought I was pretty au fait with the

whole JIA business. Lord knows I've done enough reading, and chatting

about it!

Well Bayly is now in month 4 of a pretty significant arthritis flare-

his neck and jaw and hip are all giving him grief (as some of you may

have seen at Camp Twinkletoes last weekend). Thing is, we can't

increase any meds until we find out if Bayly is to start the Enbrel

trial, and it's really tough seeing him in constant pain, yet knowing

that we can't do a whole lot more about it for the time being just in

case he gets accepted.

So it was back to physiotherapy last week, and now it's back to hydro at

least once a week, and another round of regular physio and OT as well.

After 5 years of going twice a week I thought we could manage at home

(saves time, petrol, arguments), but though Bay now has a spa at home he

can't actually walk around in it, which his hip really needs right now.

His gait is very uneven and awkward, and his posture is terrible. So

now it's more hydro, a massage twice a day, and ROM exercises at least 3

times daily. Plus painkillers as needed (pretty much every night).

On the 'up' side, Bayly's school athletics carnival is this week, and

though he did not want to go because some kids make fun of the way he

runs, he is going to have a special job as a shot put marker (hopefully,

waiting until after the shot put is thrown) so he's excited now.

I had to ask the sportsmaster if they were going to address the issues

of all the kids at school with 'special needs', and now they have, which

is good. Otherwise they would have just missed out on the day, and

working parents would have had to make alternative arrangements.

Anyhow, it's good to hear that others are going well, and we're looking

for a little piece of that action for us too!

Jo

Bayly, 7, extended oligo