Our 9 year old daughter has iritis
Hi there! About 1 year ago, my then, 8 year old daughter (our oldest) was diagnosed with iritis. It started with one of her eyes being bloodshot, then headaches started. We were right in the middle of buying a house and renovating, so I didn't really pay attention as close as I should have been. It got to the point that one day, she was in tears from the headache. I got her in with her optometrist on a Friday, she immediately told us that it was bilateral iritis and that we needed to see her doctor and also sent us to emergency at one of the hospitals that has an opthamologist on call. We went the next morning (Sat.) and saw him- after waiting hours, but thankfully we did. He put her on the dilating drops immediately and added the predforte drops every hour. We then were recommended to get in with a specialist- for kids and iritis- Monday morning. Thankfully we did catch it and it cleared up within a few weeks. Just before Christmas, it came back again, but within a couple weeks, was gone- again! Within all this, we had our 4th and 5th children who were in the hospital for 2 weeks.
I really believe that a lot of this has to do with stress. Our doctor doesn't agree with me at all. We went back a couple months ago now, for a regular check, and it was full blown and we didn't even know it. She doesn't seem to have any symptoms. EXCEPT... she seems to get aches, by this, I mean- her side will hurt- like a runner's stitch... and it seems to me that it comes when we find out that the iritis has recurred. Our doctor has had her bloodwork done, but everything has come back negative. This time... we've been dealing with it much longer- she's been on drops now for a couple months. We keep going from every hour, down, but then the pressure is way up, so when we taper and stop the drops, the iritis rears its head again and have to up the drops. Finally 2 weeks ago, we were told that the one eye was quiet and we could taper the drops in the other eye. We saw our doctor today and found out that the eye that WAS quiet is now moderate again and that the one that was moderate 2 weeks ago is quiet. So... we are back to drops every 2 hours in the one eye, getting them down to 4 times a day and keeping the other eye at 4 times a day. He told us that this will be a long term thing with the drops 4 times a day.
I know that our doctor has told us that this is normal... it usually flairs up in the fall and will usually quiets down in the winter. (same with spring flairs and summer quiets- he says) I just don't feel totally good about it all. The more I read, the more scared I get- there are so many other problems or diseases that could be causing it. I know he had blood tests done, but... I'm wondering if I should be asking her pediatrician to do a bunch more tests.?
I never knew there were so many that were dealing with this! We don't know of anyone. Our daughter is doing great with it. We homeschool- have been since she was in gr.1, so thankfully we don't have to deal with all that. I just can't imagine! But... I'm just not at peace with it all. Do I need more information or is it just normal?
Since first posting on the iritis.org website, I have been getting more info. there and finding out that long term steroid drops can do a lot of harm to the eyes. I was also given a doctor's name- Dr. Heston. I will be looking him up tomorrow. Please- if anyone has any other advice- I would appreciate it. I don't just want to think that this is it and I know our daughter is getting really frustrated, although she is dealing with it quite well, I think. Thanks.
I just wanted to welcome you to the site. You will find lots of information and support here.
I'm an adult with iritis, so can't directly address your questions about your daughter. But the chances are pretty good it is not going away by itself, and you don't want your daughter to be using the PredForte drops long-term.
You might want to check in on the parent page - there is always a lot of good advice there. We do also have a parent of a (now-young-adult) child who hails from your neck of the woods, so I'm sure she'll jump in with advice about finding good care in Alberta.
Re: Our 9 year old daughter has iritis
Rachelle,
Welcome to the UOSG support group!
I'll link a note in the parent's forum to your introduction but will also ask Lori Q to post to you here as well as she is in Edmonton. Her son Michael had a nasty case of intermediate uveitis/pars planitis which eventually responded and his eyes are now quiet. He is in the University there in Edmonton if I recall correctly.
Re: Our 9 year old daughter has iritis
I would sure appreciate any and all advice and support. We don't know of anyone around at all who has dealt with or is dealing with iritis. I am feeling VERY overwhelmed with all the information I'm trying to process especially since I thought that we would just keep taking the drops until it went away. Now I'm finding out that that would definitely cause more problems. I'm also very thankful for the support. It would be great to meet someone who has dealt with it or is dealing with it. I never thought that this was anything more than just some drops.
I am a stress researcher. Stress does not cause uveitis or any other authoimmune disease. Stress can make it more difficult to cure inflammatory illnesses because stress does stir up the immune system. Reducing stress is important to recovery.
Children typically do not complain about vision problems; it is likely that she has had this for much longer than you know.
Bilateral uveitis is caused by the immune system attacking tissues in the eye. Prednisone eye drops will calm down the symptoms but not cure the immune system problem. Get her to a specialist. You have already spent a lot of time with eye drops.
Please go to this website and look up the practice that sponsors the website; the Retina group. You can also click on the CONTACT US tab and then click on SALETTA's name. She is one of our members and started Uveitis Canada to help parents get to good treatment there. She will reply and help you make an appointment with the group.
Her little girl also has (had) uveitis. She can help you with the resources up your way. She is the child pictured on the website who is playing hockey! I will also drop Saletta a note and ask her to hook up with you here.
This thread has been moved to the Parent section
I have moved this thread in the Parent Section so other parents will spot it and meet you. Click on this link to continue your discussion there.
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