RE: Hi Oliver / Update on Josh ... was Re: spouse involvement?

[Guest guest]

Nice to hear from you Georgina! I miss you from myspace ever since i got rid

of the bugger.

Gee.. those green pills... lol.... sad to say I have a whole bottle of the

stuff that I don't need since yes it worked for me really well but

apparently it did something to my blood pressure according to the ER and

kills my stomach but it did a lot to help the pain amazingly... one of the

few nsaids i can say that about? strange how that is.

I'm glad Josh is in college now.. must be fun for him. That's rotton that

his JRA is still ever so active after all of these years.

Anyways, just wanted to send over a little hello back.

Izzie

On Jan 10, 2008 9:37 PM, Georgina <gmckin11@...> wrote:

> Aloha!

>

> Oliver, it's been ages! I was so happy to see your message : ) Happier,

> still, to read that Damian (Damien?) is doing well! How old is he now?

> Just

> a bit younger than Josh if I'm remembering ... who will be 19 in April, as

> hard to believe as that is.

>

> Josh is a Freshman now, Liberal Arts major, at the local campus of

> University of Hawaii. He stayed here on the island as the school (the one

> college we have on Maui) is literally right down the road from us ... less

> than 2 miles away ... which was very convenient. Many of his friends from

> High School (middle school & elementary too) are going there as well,

> which

> helped make it a smooth and easy transition for him. His first semester

> grades were A's and B's and he enjoys it so much more than he did high

> school. He loved being able to go full time and still not have to be on

> campus til after 10 in the morning, as he's often needed some time in the

> mornings to 'warm up' and his college schedule accommodated that. It

> worked

> out so well that he's chosen a very similar schedule for the next

> semester,

> which begins Monday.

>

> Healthwise, he had a flare back in April which saddened and disappointed

> us.

> Very sick again. His answer was to raise his prednisone dose from 7.5 up

> to

> 10mgs per day, which helped see him through. He didn't feel ready to taper

> down again until November and his body felt and reacted to the lowered

> dose

> ... even when it was 10mgs & 8mgs on alternating days. Just that tiny bit

> of

> difference makes a big difference! Right after Christmas he started having

> the rash and fevers again (mostly topping off at 103.5, so not as high as

> when he was younger) and he's even developed those awful wrist nodules

> again, which we haven't seen in quite some time. Fatigue and weight loss

> too. All too typical. Definitely signs of another flare, which I'm sure

> the

> next lab work will show evidence of. We were to see his rheumatologist

> tomorrow but he phoned today as he needs to reschedule the clinic, due to

> a

> family medical emergency. Instead, he just phoned in our new prescriptions

> to the pharmacy. A month or so on a higher 10mg daily dose of prednisone,

> which may get things in better order, and a higher dose of indomethacin.

>

> Yes, once again there seems to be a nationwide shortage here in the states

> of Indomethacin. For Josh, it seems to be the most effective of the

> several

> NSAIDs he's tried. He'd been taking 50mg capsules twice a day but they

> don't

> have any 25mg or 50mg capsules at the moment, so when we pick up the meds

> he'll be getting 75mg sustained release pills. I'm thinking that little

> extra boost may very well help and he's still taking Misoprostil to help

> prevent gastro side effects so we'll be careful to monitor for stomache

> issues but I'm feeling optimistic.

>

> We're also going to increase his methotrexate dose. He's been taking 25mgs

> a

> week for a very long time so the thinking is that perhaps coming at this

> flare from several points will help dampen the flames quickly.

>

> Josh is adamant about not wanting to try anything new quite yet. Stubborn

> and illogical perhaps but if he won't comply with a treatment, as

> wonderful

> as the outcome might (or might not) be there's really nothing I can do,

> since he's of legal adult age now, so as long as he's willing to keep up

> with these old standbys ... it's a compromise of sorts. He's still taking

> Enbrel too. And Hydroxychloroquine. They seem to work well enough, usually

> giving him several months between flares. It's just a shame that he still

> has the darned flare ups!

>

> Oliver, how did things turn out with your son's growth issues? I ask

> because, as you may remember, Josh never had a great response to the Human

> Growth Hormone injections. Well, he was standing at just 3 feet 10 inches

> for many years and it (or something) did eventually spark some growth,

> though not much - probably because we could never get him off the darned

> steroids (except for that one very brief weeks long episode). His height

> is

> 5 feet even these days but he hasn't let it slow him / get him down : ) By

> the looks of the peach fuzz and underarm hair he's sprouted, it seems the

> delayed puberty has arrived as well. Don't tell him I told you, though.

>

> I can tell it's been far too long since my last update, as I've written

> far

> too much for one post!

>

> Best regards to all,

> Georgina

> (mom of Josh, Systemic JIA since age 6)

>

> Re: spouse involvement?

> >

> > Thanks soooooo much for all the responses! I'm not alone in this.

> > I am in the process of typing up a card listing Grant's medications

> > and contact info. That is something I hadn't thought of but is very

> > important.

> >

> > Thanks! & Grant/10 PsA/Uveitis

> >

> >

> >>

> >> I have a a different question for everyone. Yesterday I had my

> >> husband, Greg, take Grant to his eye doctor appt. All our appts

> > are

> >> a 2 hour drive for us into Mpls. so we have to take off at least a

> >> half a day work.(sometimes a whole day) I just feel guilty taking

> >> all that time off of work, when my husband could be helping out

> >> some. So anyways thats why I have sent him on a couple eye

> > appts.

> >> and both times I have more questions after Greg explains things to

> >> me than I did before the appt! What really made me realize how

> >> uninvolved Greg is was yesterday he told me the Dr. asked about

> > the

> >> medications Grant was taking and Greg didn't know. He didn't even

> >> know what medications he was taking!!!! I'm assuming that this

> > is

> >> just a " man " thing especially since I've noticed that this group

> > is

> >> composed primarily of women. Has anyone else had to deal with

> > this

> >> and how do you get them to be more involved? Do you send your

> >> husbands to appts. w/out you? I guess I'm hoping that I'm not

> > alone

> >> in this. I think Greg realized yesterday that he needs to learn

> >> more about this. Hopefully he will start reading the pages upon

> >> pages of articles I've printed about JA and Uveitis.

> >>

> >> & Grant 10/PsA/Uveitis

> >>

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Georgina,

Glad to hear that Josh is doing so well at Uni. I have a suspicion that the

body compensates for physical difficulties somehow and makes our kids

bright, Damien is a very smart lad.

He's 13 years old now and has managed to get his education back on track,

having moved from special needs (disabled) to normal school and also to jump

two school years to get to his correct age group. Needless to say, we are

all chuffed with his progress.

I am so sorry to hear that Josh is still getting flares. Damien still has

some activity in a few joints but nothing in comparison with the old days.

We never went down the growth hormone route. He is still very small for his

age but is gradually growing, hopefully this will continue. As for

adolescence, I haven't noticed any major changes yet but I guess it's early

days.

Anyway, great to hear from you again. All the best.

Oliver

Hi Oliver / Update on Josh ... was Re: spouse involvement?

Aloha!

Oliver, it's been ages! I was so happy to see your message : ) Happier,

still, to read that Damian (Damien?) is doing well! How old is he now? Just

a bit younger than Josh if I'm remembering ... who will be 19 in April, as

hard to believe as that is.

Josh is a Freshman now, Liberal Arts major, at the local campus of

University of Hawaii. He stayed here on the island as the school (the one

college we have on Maui) is literally right down the road from us ... less

than 2 miles away ... which was very convenient. Many of his friends from

High School (middle school & elementary too) are going there as well, which

helped make it a smooth and easy transition for him. His first semester

grades were A's and B's and he enjoys it so much more than he did high

school. He loved being able to go full time and still not have to be on

campus til after 10 in the morning, as he's often needed some time in the

mornings to 'warm up' and his college schedule accommodated that. It worked

out so well that he's chosen a very similar schedule for the next semester,

which begins Monday.

Healthwise, he had a flare back in April which saddened and disappointed us.

Very sick again. His answer was to raise his prednisone dose from 7.5 up to

10mgs per day, which helped see him through. He didn't feel ready to taper

down again until November and his body felt and reacted to the lowered dose

.... even when it was 10mgs & 8mgs on alternating days. Just that tiny bit of

difference makes a big difference! Right after Christmas he started having

the rash and fevers again (mostly topping off at 103.5, so not as high as

when he was younger) and he's even developed those awful wrist nodules

again, which we haven't seen in quite some time. Fatigue and weight loss

too. All too typical. Definitely signs of another flare, which I'm sure the

next lab work will show evidence of. We were to see his rheumatologist

tomorrow but he phoned today as he needs to reschedule the clinic, due to a

family medical emergency. Instead, he just phoned in our new prescriptions

to the pharmacy. A month or so on a higher 10mg daily dose of prednisone,

which may get things in better order, and a higher dose of indomethacin.

Yes, once again there seems to be a nationwide shortage here in the states

of Indomethacin. For Josh, it seems to be the most effective of the several

NSAIDs he's tried. He'd been taking 50mg capsules twice a day but they don't

have any 25mg or 50mg capsules at the moment, so when we pick up the meds

he'll be getting 75mg sustained release pills. I'm thinking that little

extra boost may very well help and he's still taking Misoprostil to help

prevent gastro side effects so we'll be careful to monitor for stomache

issues but I'm feeling optimistic.

We're also going to increase his methotrexate dose. He's been taking 25mgs a

week for a very long time so the thinking is that perhaps coming at this

flare from several points will help dampen the flames quickly.

Josh is adamant about not wanting to try anything new quite yet. Stubborn

and illogical perhaps but if he won't comply with a treatment, as wonderful

as the outcome might (or might not) be there's really nothing I can do,

since he's of legal adult age now, so as long as he's willing to keep up

with these old standbys ... it's a compromise of sorts. He's still taking

Enbrel too. And Hydroxychloroquine. They seem to work well enough, usually

giving him several months between flares. It's just a shame that he still

has the darned flare ups!

Oliver, how did things turn out with your son's growth issues? I ask

because, as you may remember, Josh never had a great response to the Human

Growth Hormone injections. Well, he was standing at just 3 feet 10 inches

for many years and it (or something) did eventually spark some growth,

though not much - probably because we could never get him off the darned

steroids (except for that one very brief weeks long episode). His height is

5 feet even these days but he hasn't let it slow him / get him down : ) By

the looks of the peach fuzz and underarm hair he's sprouted, it seems the

delayed puberty has arrived as well. Don't tell him I told you, though.

I can tell it's been far too long since my last update, as I've written far

too much for one post!

Best regards to all,

Georgina

(mom of Josh, Systemic JIA since age 6)

Re: spouse involvement?

>

> Thanks soooooo much for all the responses! I'm not alone in this.

> I am in the process of typing up a card listing Grant's medications

> and contact info. That is something I hadn't thought of but is very

> important.

>

> Thanks! & Grant/10 PsA/Uveitis

>

>

>>

>> I have a a different question for everyone. Yesterday I had my

>> husband, Greg, take Grant to his eye doctor appt. All our appts

> are

>> a 2 hour drive for us into Mpls. so we have to take off at least a

>> half a day work.(sometimes a whole day) I just feel guilty taking

>> all that time off of work, when my husband could be helping out

>> some. So anyways thats why I have sent him on a couple eye

> appts.

>> and both times I have more questions after Greg explains things to

>> me than I did before the appt! What really made me realize how

>> uninvolved Greg is was yesterday he told me the Dr. asked about

> the

>> medications Grant was taking and Greg didn't know. He didn't even

>> know what medications he was taking!!!! I'm assuming that this

> is

>> just a " man " thing especially since I've noticed that this group

> is

>> composed primarily of women. Has anyone else had to deal with

> this

>> and how do you get them to be more involved? Do you send your

>> husbands to appts. w/out you? I guess I'm hoping that I'm not

> alone

>> in this. I think Greg realized yesterday that he needs to learn

>> more about this. Hopefully he will start reading the pages upon

>> pages of articles I've printed about JA and Uveitis.

>>

>> & Grant 10/PsA/Uveitis

>>

>

>

>

>

>

>