Uveitis

[Samr85]

My 4 year old daughter was diagnosed with uveitis in January. It's a painful inflammation of the eye. Apparently it's quite rare in children and just wondered if there was anyone else who had any advice or going through the same thing with their child or themselves?

My daughter was diagnosed with uveitis when she was 9 she is now 16 and still having treatment. Has your daughter got any underlying conditions?

The doctors haven't found anything else and just say they are unsure of why she has got it. They told us it's in her DNA makeup so mat keep getting it. When she was first diagnosed, after 2 different doctors sending us away saying she may have something in it, she had a small op to put a load of antiflamatory drops in the eye and she was on hourly drops through the night. Over the months drops have been reduced and after less than 2 weeks of being off them it came back badly again and was back on 6 drops a day. It was reduced to 4 on Thursday. The specialist said she will definitely need drops for the next year and possible future. Her pupil in that eye is stuck due to scarring and her vision has been affected. How badly does your daughter have it and how does she cope?

Oh that's rubbish (I have it but only since I was 18). Poor you and her. They did some blood tests on me and identified a genetic marker (HLAB27) which is associated with this, and other, autoimmune conditions. Worth asking whether your DD should be checked for this.

Thank you. Will will definitely do that. What does the genetic marker mean? Does it mean she may have other problems too such as the autoimmune conditions?

My Dd started on eye drops when they didn't help she had a 3 day steroid infusion. She was started on methotrexate which is an immune suppressant then went on to infliximab and has more recently been changed to humeria injections. I think hers has been quite stubborn to treat her vision is okay with glasses.

There is a cluster of autoimmune things related to inflammation. The genetic marker may mean you are more prone to the other things too. It's not a huge deal, but might be better to know so you can watch out for signs of anything else developing.

Your poor dd Uveitis can be pretty miserable. I was only diagnosed at age 40! It came totally out of the blue. I also have the genetic marker HLAB27. I have good years when I only get one or two flare ups and the odd bad year where I seem to spend most of the year on drops.

There are maintenance treatments as pp mentioned to try and prevent flare ups and reduce the risk of damage to the eye. My last bad flare up has affected my sight in my right eye.

How do you or your children cope with it and how does it affect your/their daily life. Just horrid knowing that she may have to treat this for the rest of her life and that although manageable it could affect her vision permanently. I feel the doctors are very vague at giving any advice or clear answers.

Samr85 I agree Doctors can be very vague about this condition, I suspect partly because it's varies so much in each individual. But they could give more information about the disease itself and the treatment options. I had to do all my own research, and got really pissed off when after two years I hadn't seen a Consultant just always junior doctors who didn't seem very clued up! I had a bit of a tantrum and finally saw a Consultant who was a bit more helpful and ordered the gene test. But tbh I still feel like I have no idea how this is all going to pan out in the future.
Hopefully your dd will have it mildly and have long periods of remission.

It makes a difference if you can get referred to the right consultant. Mine lets me self treat with steroid drops when I get a flare up. I know the signs now and can treat them almost immediately, so these days the flare ups generally only last a few days and are hardly painful at all.

We are trying to teach her that as soon as she notices a change in her sight or any sort of pain to let us know. But of course she is only 4 and this is a risk coz she'll just adapt to using her eye which isn't affected. She says her eye is "fizzy" when she can't see as well out of it so she maybe beginning to recognise the signs? We notice she squints that eye when in the sun so we are beginning to notice the signs too hopefully and the doctor said as soon as we notice anything to book her straight in to see him. They have been really good and as soon as it was diagnosed they were on it. Very scary for us though as there was a lot of talking amongst themselves and not really explaining anything...and that's how it still seems.

My first symptom is normally an enlarged pupil. DH often notices before I do. So watch out for that.

Thank you, unfortunately due to scarring her pupil no longer dilates. It is stuck in a smaller position so won't get large. We need to look for redness or hobby her judgement on vision which is scary.