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5 year old ds just diagnosed with uveitis

3 replies

pokhara · 27/03/2011 14:45

pokhara said on 27/03/2011 at 1:27 pm

Hi, I am new to this forum, and am hoping for some advice and guidance please. My son has just turned 5 years old, he has a laguage delay and learning difficulties, he is long sighted and has been wearing glasses for 18 months now. He has a turn in his right eye so we go the eye clince every 8 weeks so they can keep and eye on it as my dad has a lazy eye. He has an eye test every august. 5 weeks ago at one of the routine appointments the lady was concerned that his eyesight had deteriorated a lot and arranged an urgent eye test for him. We went for the eye test appt at the hospital and when they put the drops in his eyes his left pupil went square. I mentioned this to the dr doing the eye test, she looked in his eye and went got her boss, who had a look and told me that he has uveitis, in his left eye 4 parts of his iris are sticking to the lens and in the right eye 2 part are sticking to the lens. She asked lots of questions about red eyes, joint and bone pains etc, I was very worried. She made an appointment with a surgeon for a week later and another appontment with another consultant to check his bones and joints out. We saw the surgeon on thursday, who said it was severe and was concerned that he doesn't get the tell tale sign of havng a red eye, he also said he thinks due to the severity he has had it since birth, and that he prob has a serous imflammatory disease. He needed to look further at his eyes but my son was so upset at having to sit still for about 2 hours while lots of people looked into his eyes, the surgeon said to come back in 2-3 weeks and he will have another look, and if my son won't resppnd they put him to sleep and take a look. On friday we saw another consultant who said she was very concerned as my son has been complaining of lower back pain for 2 years (we have been under hosp for this), she said she will arrange xrays and blood tests this week and will speak to the surgeon to delay the enevitabe and just take his to thetare in next week or two and refer him to alderhey childrens hospital as they have a uveitis clinc. Yesterday I got a letter for my sons appoointment, in 6 weeks time, obviously this has been sent before the lady doctor spoke to the surgeon. On thu the surgeon said his uveitis was really bad more so in his right eye and that the drops wern't working. I am just distraught, I don't knw what to do, my son doesn't communicate well and I don't know how well he can see, should I be demanding the surgeon sorts it out sooner, I don't know it all happened so fast and I am so scaredof him losing his sight, I asked the surgeon what it all means and what will happen, he jsut answered 'let's not get too much into that and let's just take one day at a time. No one has answered any of my questions and I don't know where we stand. The only thing I know is that he may lose his eyesight, especially as it is not being treated at this very moment. Sorry to go on but if anyone can advse me, give me info that would be great, thanks

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Are your children’s vaccines up to date?
ND2 · 27/03/2011 16:30

Please visit www.oliviasvision.org

This is a uveitis charity I set up last year after my own daughter was diagnosed with autoimmune bilateral chronic uveitis. We have on our medical board 3 of the UK's most eminent uveitis specialists.

Feel free to use the forum or the Helpline number or email us on
[email protected]

  • we are here to support sufferers and their families.

Read all the info we have on offer particularly on Children and Uveitis and JIA associated uveitis under the title "What is Uveitis"

Do not panic, much can be done to effectively treat uveitis and avoid blindness if quick action is taken. For 50% of sufferers a cause is never found and the uveitis is said to be idiopathic. Children with JIA type do not get any symptoms until vision fades which could be why your child did not have the red eye or pain of adult uveitis.

Please don't hesitate to contact me for further information or advice.
Nicki

alibobins · 27/03/2011 16:48

Dd is 10 and was diagnosed with uveitis in a very similar way to your son although we were admitted for treatment the next day she has a steriod drip for 3 days and then was put on weekly methotrexate injections.
It was and still is such a scary experience dd has also had a steriod injection and examination under general aneasthetic.
After lots of tests no cause has been found as to why dd has this and like your ds she shows no symptoms. She is going through a flare up at the minute so we have weekly appointments at the hospital 3 monthly blood tests and 2 monthly appointments with a rheumatologists.
Any questions feel free to pm me.

pokhara · 28/03/2011 17:43

Thanks nd2, what a brill site, so much info, it prompted me to go to another hospitals a&e out of county this morn who are shocked ds has been left untreated we go back tom to take him to theatre and have treatment and xrays and bloods. Thanks so much

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