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Original poster

does anyone have any experience of UVitis??

55 replies

stoppinattwo · 15/05/2007 21:46

DS has had it for 4 years now............we have another hosital appointment in a few weeks and I wasnt to ask a few questions.

Any help??

OP posts:
SaintGeorge · 16/11/2007 23:25

Oh fantastic news!

You must be over the moon.

Give him a hug from me, I am so pleased for him.

Tiggiwinkle · 16/11/2007 23:48

Excellent news!

Original poster
stoppinattwo · 17/11/2007 07:05

Thankyou..............i feel like a big weight that always preyed on my mind has lifted slightly. It worries me and was a daily reminder (when he had his drops).

Dr said he now needs to take responsibility for his symptoms and tell me how he feels (ie any eye pain or discomfort) as he will feel any indication far soon than I will notice iykwim

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Tiggiwinkle · 17/11/2007 07:56

Yes it is an unmistakeable feeling soppinattwo-one of the specialists I saw said they always take uveitis sufferers seriously as they know the feeling and can recognise symptoms long before any visible signs appear.

BadKitten · 17/11/2007 09:02

Thats fantastic news

Original poster
stoppinattwo · 09/01/2008 21:04

hey guys...............went back today

completely clear

how good is that

He is gonna be reviewed in april, but no steroids required at all oh I am soooooo pleased... oh yes and so is DS

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lulumama · 09/01/2008 21:06

fantastic news, and so glad all is well !!

and now , breeeeeeathe !

Original poster
stoppinattwo · 09/01/2008 21:09

oh i was dnacing in work when i found out, think they thought the phone was wired up to the mains

DP had to take him cos with the new job n stuff it was hard to get the time off.

Tis DS's b'day tomorrow so is a good start..........no more blardy eye drops

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Original poster
stoppinattwo · 02/04/2008 17:12

ok.........so we went back today and the bad cells are back but consultant is suggesting that he can only see 1-5 bad cells in each eye so wants to keep him off the steroids and review again soon, any mor than that and the steroid drops are back!!!

But on the upside.........he is confided that this condition will not stay for life as those who develop it in adult hood have, he is more likely to grow out of it in late teens (fingers crossed)

OP posts:
Original poster
stoppinattwo · 02/04/2008 17:13

should be confient not confided

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Original poster
stoppinattwo · 02/04/2008 17:13

grrr confident

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Original poster
stoppinattwo · 03/04/2008 20:45

oh where are SG and tigg when you need them??

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Original poster
stoppinattwo · 04/04/2008 17:39

Bump !

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Lulumama · 04/04/2008 17:41

oh no . what a disappointment

Original poster
stoppinattwo · 04/04/2008 17:44

am gutted lu tbh.............dont quite know what i was hoping for but I just dont like the fact that I cant do anything about it

OP posts:
SaintGeorge · 04/04/2008 17:44

Here, give me a minute to read thread and catch up

Tiggiwinkle · 04/04/2008 17:46

Hi Stoppinattwo. Sorry to hear the news is not so good this time. As I mentioned before, I only get uveitis in acute episodes, and have treatment then- which is stopped as soon as the inflammation subsides.
Is your DS having any symptoms?

SaintGeorge · 04/04/2008 17:48

Bummer that it is back again but 1-5 cells really is a very small amount for a chronic suffer (which your ds is).

If it makes you feel any better, my consultant has told me in the past that it is level that they would expect to see on an almost permanent basis in a chronic sufferer and not something that would be routinely treated.

I suspect your consultant take a different tack though, going by the length of time he has kept your ds on steriods.

Original poster
stoppinattwo · 04/04/2008 17:49

he has been getting bloodshot eyes....but no pain.

He doesnt like too much sunlight either but then who does, he tends to cringe on sunny days iykwim

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SaintGeorge · 04/04/2008 17:51

takes

There is also the possibilty that this is a rebound reaction to the withdrawal of the steriods. After the length of time he has been on them it would be unusual for there to be no reaction at all.

IIRC I have commented before that I was surprised that they were willing to keep a child on constant steroid treatment for so long. I have been classed as a chronic sufferer for the last (adds on fingers) 17+ years and I only use steroids in acute periods, never in between.

Original poster
stoppinattwo · 04/04/2008 17:52

thanks guys...

The consultant did say that DS was the most documented kid they had with the uvitis (given that he has been going to them for 5 years now) and he had had every test under the sun to try and find out why he had it. there is nothing else they could do....i just hope that in 3 months time they say it is still under 5 and not like a bleedin snow storm!!!

OP posts:
SaintGeorge · 04/04/2008 17:53

His eyes are likely to be always sensitive unfortunately. I need glasses anyway so I always have 'reactolites', meaning I never have to worry about bright days.

My eyes become bloodshot very easily, something as simple as a stray eyelash can set them off. Basic eye drops from the chemist to keep the eyes moist can be a big help.

Original poster
stoppinattwo · 04/04/2008 17:53

I think thay kept him on them for so long because they couldnt get it to stay low count....every time they lowered the steroids he reacted grrrrr

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Original poster
stoppinattwo · 04/04/2008 17:55

I think i need to be grateful really his sight isnt affected but i just wish i could have it for him....am just hoping as the consultant suggested he will grow out of it as he hasnt developed it in adult years.

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SaintGeorge · 04/04/2008 17:57

I hope so to, bless the poor lad. He really does have my sympathy in bucket loads.

My most recent attacks kept me off MN from Christmas until last week! 3 months, nearly killed me (the lack of MN, not the iritis)