Re: Hunter's eye appt. today

[Guest guest]

Georgina,

Thank you so much for your lengthy and always informative reply!! I

will be ready for the " red blinking light test " if it ever comes to

that. Always learning, aren't we. Are the cataracts in Josh's case

a result of the meds?

As far as the blood draw goes, next time, in a couple weeks, I am

going to give his daddy the pleasure, and see what happens. Lucky

daddy. Tell me more about using a regular syringe instead of the

butterfly, and it's done faster???? Hunter usually gets 3-4 vials.

Can that be done more quickly with one poke from a syringe????

I'm not deleting your post so people can know what we're talking

about.

Thank you so much for the information and I pray the next eye

blinking light test shows nothing.

Stacia and Hunter,7,systemic,iritis

> > Hi all,

> >

> > Another eye appt. under our belt. I was so nervous -- the

iritis

> > scares me a lot with cumulative damage, just like joints. The

dr.

> > did again confirm how rare it was to see iritis in systemic JRA,

but

> > not unheard of.

> >

> > Hunter's been down graded to a 1+ (on the 0, 1/2+, 1+, 2+, 3+,

4+

> > scale). All the inflammation is in the anterior chamber (I

think

> > good?). This ped. ophth. thinks that 2 drops/day pred forte is

what

> > he'll be on for quite some time. He talked a lot about the

tight-

> > rope-walk thing with all the systemic meds. like MTX versus

> > increasing/decreasing the eye drops. If you increase the eye

drops,

> > you increase the risks of cataracts and glaucoma from the pred.

> > drops, but if you undertreat, you again risk the cataracts and

> > glaucoma from the disease.

> >

> > His goal is not necessarily to eliminate the iritis to 0, but to

> > manage to keep it at the lowest level possible. Interesting.

> >

> > I guess we'll take this one one month at a time, with monthly

visits

> > for a while. It could be so much worse and I pray we never get

> > there.

> >

> > Stacia and Hunter, 7, systemic, iritis

[Guest guest]

Helen,

The symptoms we were told to watch out for are pain,

photosensitivity and blurred vision. He needs to be seen

immediately if any of those occur.

I specifically asked about if the disease can cause a child to need

glasses. The ped. ophth insisted that nearsightedness and

farsightedness were 100% independent issues from iritis/uveitis.

He also explained that iritis is a subset of uveitis, but they were

essentially used interchangeably.

Hunter has never mentioned anything about his eyes, even when he had

a 3+ rating of inflammation. Unless you notice any of the symptoms

mentioned above, this is a spooky and stealthy disease. There can

be an awful lot of damage without anyone knowing if not monitored

carefully and frequently.

Hunter has seen a ped. ophth. for 4 years now. I do remember one of

them saying that it is very common for all kids in general to be

going through eye changes all the time, (slight) and that it is not

uncommon at all for some kids that age to be slightly farsighted.

Hunter was 5 or 6 at the time I am referring to.

It goes without saying, that if you have a concern about his vision,

get him seen. Don't get overly paranoid because of all the " bad "

stuff you read on the jralist. I fall into that trap myself

sometimes.

>Im wondering if this is

> just because someone in his class just got glasses or he is having

> trouble ( he usually mentions this when hes trying to read

something.

> Especially word searches, he loves those)

There could be some truth to the above statement...when I was in

third grade, someone in my class just got glasses and got special

attention. Shortly thereafter, I started to think I couldn't see

well. I eventually needed glasses, but the special attention thing

might be real.

Also, remember that the iritis in systemic kids is truly RARE, not

unheard of, but rare. I hope this helps,

Stacia and Hunter,7,systemic,iritis

[Guest guest]

Helen,

Is Nick on MTX? Tyler also complains of the sun hurting his eyes and needs

sunglasses when I don't even need them. I brought it up the the Rhuemy, she said

possible side effect of the MTX for the eye's and skin to be sensitive to sun.

Just wanted to pass that info along.

Missy and Tyler (spondy 10)

Re: Hunter's eye appt. today

> Stacia.

>

> Thank you for the reply...))

>

> I try not to overeact and try and remember that these kids will

> also

> have the usual everyday stuff that all kids deal with. Although

> its

> easy to fall into the " this is because of his JRA trap "

>

> I do worry about the eyes though because it does seem like a

> silent

> but very serious part of the disease.

>

> I will be making an eye appt for Nick in the morning, just for my

> own

> piece of mind if nothing else... in the past few months Nick has

> complained on 2 different occassions of his eyes " burning " , has

> complained of not being able to read word finds and just today,

> had

> to come in for his sunglasses ( no one else is wearing theres )

> They

> are playing outside and it is a nice spring day.

>

> I know the odds are in our favor that nothings wrong, but then i

> think of you and know it is possible. So best to be safe than

> sorry,

> especially when we are talking about eyes.

>

> Hugs Helen and (6 systemic)

>

>

> > Helen,

> >

> > The symptoms we were told to watch out for are pain,

> > photosensitivity and blurred vision. He needs to be seen

> > immediately if any of those occur.

> >

> > I specifically asked about if the disease can cause a child to

> need

> > glasses. The ped. ophth insisted that nearsightedness and

> > farsightedness were 100% independent issues from iritis/uveitis.

> >

> > He also explained that iritis is a subset of uveitis, but they

> were

> > essentially used interchangeably.

> >

> > Hunter has never mentioned anything about his eyes, even when he

> had

> > a 3+ rating of inflammation. Unless you notice any of the

> symptoms

> > mentioned above, this is a spooky and stealthy disease. There

> can

> > be an awful lot of damage without anyone knowing if not

> monitored

> > carefully and frequently.

> >

> > Hunter has seen a ped. ophth. for 4 years now. I do remember

> one

> of

> > them saying that it is very common for all kids in general to be

> > going through eye changes all the time, (slight) and that it is

> not

> > uncommon at all for some kids that age to be slightly

> farsighted.

> > Hunter was 5 or 6 at the time I am referring to.

> >

> > It goes without saying, that if you have a concern about his

> vision,

> > get him seen. Don't get overly paranoid because of all the

> " bad "

> > stuff you read on the jralist. I fall into that trap myself

> > sometimes.

> >

> > >Im wondering if this is

> > > just because someone in his class just got glasses or he is

> having

> > > trouble ( he usually mentions this when hes trying to read

> > something.

> > > Especially word searches, he loves those)

> >

> > There could be some truth to the above statement...when I was in

> > third grade, someone in my class just got glasses and got

> special

> > attention. Shortly thereafter, I started to think I couldn't

> see

> > well. I eventually needed glasses, but the special attention

> thing

> > might be real.

> >

> > Also, remember that the iritis in systemic kids is truly RARE,

> not

> > unheard of, but rare. I hope this helps,

> >

> > Stacia and Hunter,7,systemic,iritis

>

>

>

>

>

[Guest guest]

Stacia. I am right there holding my breath with you and Hunter. The

iritis/uveitis is the thing that scares me the most with Caroline.

It has no visual symptoms. You don't know for two weeks or a month

whether or not the drops and meds are working. I am in a constant

state of panic until each appointment. It is interesting that your

doctor doesn't think it will get down to 0. Isn't that the eventual

goal with this symptom?

Alia and Caroline, age 2, pauci and uveitis

> Hi all,

>

> Another eye appt. under our belt. I was so nervous -- the iritis

> scares me a lot with cumulative damage, just like joints. The dr.

> did again confirm how rare it was to see iritis in systemic JRA,

but

> not unheard of.

>

> Hunter's been down graded to a 1+ (on the 0, 1/2+, 1+, 2+, 3+, 4+

> scale). All the inflammation is in the anterior chamber (I think

> good?). This ped. ophth. thinks that 2 drops/day pred forte is

what

> he'll be on for quite some time. He talked a lot about the tight-

> rope-walk thing with all the systemic meds. like MTX versus

> increasing/decreasing the eye drops. If you increase the eye

drops,

> you increase the risks of cataracts and glaucoma from the pred.

> drops, but if you undertreat, you again risk the cataracts and

> glaucoma from the disease.

>

> His goal is not necessarily to eliminate the iritis to 0, but to

> manage to keep it at the lowest level possible. Interesting.

>

> I guess we'll take this one one month at a time, with monthly

visits

> for a while. It could be so much worse and I pray we never get

> there.

>

> Stacia and Hunter, 7, systemic, iritis