Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

ds jsut diagnosed with uveitis

8 replies

pokhara · 27/03/2011 13:50

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

OP posts:
sneezecakesmum · 27/03/2011 14:21

Don't want to read this and not offer a bit of support. I'm afraid I dont know anything of this condition. Are there counsellors attached to Alder Hey who might help? Maybe Child Health thread might have some advice as its more health related than to do with DS SN. Poor little mite to have to go through all this. x

TheNinjaGooseIsOnAMission · 27/03/2011 14:41

there's this lot that may be useful. If his eye sight has deteriorated it may be worth asking your local doc for a referral or you may be able to self refer, to your local sensory impairment service to see if you can have access to a Qualified Teacher for the Visually Impaired, they are connected to education but work with children from birth. You should be able to find a link via your council website. It may also be worth googling Moorfields hospital in London to see of there's any info there.

TotalChaos · 27/03/2011 14:45

Sorry dont know anything about uveitis, so cant advise on that, sounds v worrying and hope the next appts are more positive. It sounds like the friday doctor is trying to get him seen quicker, so i would start chasing midweek if noone has contacted you about the blood tests or xrays. Chase by asking for the consultants sec on the phone.

Al1son · 27/03/2011 14:49

My DD2 is being assessed fro ASD and will be seeing a rheumatologist in a couple of weeks because they think she has Juvenile Arthritis. She has an appointment at B'ham Children's Hospital tomorrow to check her eyes for uevitis because the tow often go together. I'm guessing that's what thye tink you son has too.

If you Google Juvenile Arthritis you may get some more supportive information about the whole thing. I did this myself a couple of weeks ago and there seem to be quite a few charities related to it. Perhaps one will have an advice line you could call.

Let's keep our fingers crossed for each other eh?

Al1son · 27/03/2011 14:50

Blimey I should have read that before I posted! Sorry for the typos - I'm a bit stressed today.

pokhara · 27/03/2011 14:56

Hi my ds is too being assessed for asd. They are doing lots tests, he has pain bottom of back, so looking at few things

OP posts:
moosemama · 27/03/2011 19:16

Hi pokhara

So sorry to hear about all the problems your poor ds is having.

I'm afraid I don't know anything about uveitis, but I just noticed this thread in unanswered messages and thought it might be good to bring it to your attention.

Its to do with a new charity that support families where there's a child who has been dx with uveitis.

Just in case the other thread disappears for any reason the charity is called Olivia's Vision

Hope you can find some help and support through them.

glittery · 28/03/2011 11:12

think it was uveitis my xp had and he ended up having a corneal graft, im sure the doc said it was caused by herpes simplex infection like cold sores but it was a few years ago now so that may be wrong!

New posts on this thread. Refresh page