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Aja
Registered User
(2/1/09 3:14 pm)


Aja - Mom of 3 yr old with Iritis
Hi,

I'm struggling to gather as much knowledge as possible before taking my son to see our local opthamologist.

My son will be 3 next week. We live in Ontario, about two hours from Toronto. My apologies in advance for the long post, but I need to vent.

Exactly 3 months ago I noticed his left eye was pink. My husband said it was probably a result of hitting it on his shoulder when they were roughhousing earlier in the day or from the chlorine in the pool. He also had a cold at the time and when it hadn't improved and we took him to our family doctor he was diagnosed with conjunctivitis and given Fucithalmic drops.

His eye did not improve and then he had an allergic reaction with facial swelling and hives. Eye went untreated as they thought the continued redness was a result of the reaction to the drops. Saw our family doctor the following week because his eye was still pink, he was crying with the photophobia and I had a BAD feeling. It was dismissed as part of being a kid with cold in the winter and that maybe I had never noticed that he had a droopy eye.

Two days later I took him to the local ER, saw the opthamologist on-call and he was diagnosed with Iritis and corneal adhesions. Prescribed Prednisolone every 4 hours, Maxidex at bedtime and Homatropine dialting drops twice a day. 10 days later, no improvement, so Prednisolone increased to every 2 hours. 10 days later, no improvement again, so booked for an examination under anesthia and a peri-orbital kenalog injection of a steriod. It was put off for a few weeks because of Christmas. When we went in for the pre-op on Jan.5 the opthamologist said it was looking much better, we could wean off the drops over the course of 3 weeks and we wouldn't need to come in again.

So, Jan. 26 was his last Prednisolone drop. I was nervous so I got my family optometrist to agree to see him every 3 months. She saw him the following day and said although she could see where the adhesions were, things looked fine. However, by Jan. 29 his eye was starting to get pink. The photophobia is starting to return. We went to our local clinic on Sat, Jan. 31 and was told to try and call the opthamologist on Monday and see about starting the drops again.

Some of the information I have been reading is scary, so I want to be proactive and ask the right questions. It is hard to know where to start. It looks like I should start looking for a specialist.

Aja

Rachel Kys mom
Registered User
(2/20/09 5:58 pm)


Re: Parents and Kids: Introduce Yourself Here
Hi my name is Rachel and my daughter Kyleigh has JRA and now we found out that she has Uveitis. Im terrified. We are on pred forte every 2 hours and 1 time in the night is this normal? She is taking naproxin 2 times a day and that is all for the JRA. And we also diliate her eyes 2 times a day. Kyleigh is a 5 year old full of life and energy. This does not slow her down at all. I would like to know if this is normal or maybe it is not a bad case. This is all so new to me. Her uveitis was a +4 now down to +1-2 so that is good but now her pressure is a 29 in one eye and a 33 in the other is this normal? It would be so nice to have answers from other mother who know what Im going thru. I cant sleep because I just dont know why this has to happen. Thank you Rachel

Lamilu
Registered User
(5/6/09 11:52 am)


Newb Here!
Hi Everyone,

My name is Susanne. My daughter is 5 years old and has JIA. She has had recurring flares of Uveitis. She has been on MTX for a year and her JIA is in remission. Recently she started MTX injections due to the Uveitis. Today, she has a apt with her Ophthalmologist to check and see if the injections are working. Her eye has a red ring around the colored part of her eye though, so I'm sure she is still active :( We will find out today.

Thanks for this site! It's sad but supportive to know we are the only ones that are going through this. Thanks!!!

mimacd
Registered User
(6/9/09 7:30 am)


Re: Parents and Kids: Introduce Yourself Here
Hi my name is Michelle and my 11 year old daughter has just been diagnosed with Occular Inflammatory Disease in her left eye.We are trying to decide what is the best option for her(Surgery or Medicine).If we start with medicine they want to start her on 15mg of Methotrexate once a week.I just found out that this is a chemo drug so I am a little nervous about putting her on this especially for 2 years.They also gave us the option of sugery which seems scary as well.Then our final choice is to try the Methotrexate for 6 months before deciding on sugery.If anyone has any experience or advice I would greatly appreciate this as we are very confused as to what decision to make.


Thanks,
Michelle

MikeBartolatz
Registered User
(6/9/09 9:27 am)


Re: Parents and Kids: Introduce Yourself Here
Hi michelle, welcome to the group,
I assume your daughter has pars planitis which is inflammation of the area just behind the iris between it and the retina. often surgery to remove the material of the vitreous and to seal off the pars plana is performed to try to stop the inflammatory process as a next step in this type of uveitis before the chemotherapeutic drugs are tried.
over the years many people have had this type of surgery with great success. sometimes this surgery alone doesn't stop the inflammation. Renee's daughter Alexa had to have sseveral of these surgeries as well as various combinations oof drugs to finally get off of all drugs without inflammation. I know she will greet you soon with her 'story'.
the medical profile of methotrexate has been found to be quite safe. all of the 'stories' you read about it are from the early years with use in Transplant patients where the drug was at a much higher dose than what is used to treat uveitis and arthritis. some studies have even indicated a better outcome long term with early use of these drugs than waiting many many years before using them.

please ask questions and the parents will support you in any way they can. if your daughter's vision is severely impacting learning in School, the foundation has Dr Sharon Ray here to help you get schools to implement various programs for learning.

we have a couple of pamphlets that you can print out to help you with this as well available at our parent site, www.uveitis.org in the PATIENT information section of the site. one is Uveitis: A Guide for Teachers and Parents which addresses coping skills and means of assisting the child in the School setting.
www.uveitis.org/kids/default.htm
there is another which has general information for all ages.

www.uveitis.org/patient/a...chemo.html

www.uveitis.org/kids/parents/

Wishing you the very best,
Mike Bartolatz
facilitator of the Learning about OID forum of this site
Moderator of the www.parsplanitis.org forums

Edited by: MikeBartolatz at: 6/9/09 10:30 am
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