Lemon Tree Passage, Port Stephens, 3yr old son with Uveitis
Hi Folks,
My name is Amanda and as you can see from the subject am from LTP in NSW!!
I have just posted a brief intro and history of what Connor has been going through since diagnosis in August last year, on the parents forum. I'm not so crash hot with the old cut and paste and definately to tired to retype!!! Maybe if you have an interest in responding you might take a wee look on that forum.
I am feeling a bit lost with the realisation of what the future holds for Connor and his sight and would love to hear from anyone who has support, info, encouragement or similar experiences to share.
Hi Amanda,
My name is Wendy and my 8 year old daughter has uveitis. She was diagnosed 4 years ago and its been a real rollercoaster ride. I hope to hear from you soon so we can chat if you would like to. I live in Tasmania.
regards Wendy
Re: re-uveitis
hi Wendy,
thanks for replying to my post. Sorry it has been a long time with no reply. I have had a very busy few months and have not been near a computer in a long time.
I have no email address at the moment but will be setting one up soon. I have very little time at the moment but would love to hear from you and chat. Please communicate through here in the meantime.
Hope your daughter is well and you have found some sympathetic and good doctors.
All the best
Amanda
uveitis
Hi Amanda,
Nice to hear from you. We have had a busy time too as Emily has had 2 more operations but she is on the mend now thank god. We are lucky as all of Ems docs are really great so that makes a big difference. Hope all is well with you and your family and hope to hear from you soon.
Regards Wendy and Emily
Re: Lemon Tree Passage, Port Stephens, 3yr old son with Uvei
Hi!
Im Kylie and live in Sydney. My son was diagnosed with uveitis in both eyes about 3 years ago. At times I have felt like the only one in Australia dealing with this problem - Im glad Im not - It is such an ongoing rollercoaster of drs appointments, eye drops, hospital visits etc etc as you all well know.
I really appreciate everyones thoughts on this site, it has made me feel like there are people who understand.
Re: Lemon Tree Passage, Port Stephens, 3yr old son with Uvei
Kylie,
here is a list of the Opthalmologists in Australia whom have asked to be placed on Dr Foster's specialist list at www.uveitis.org located in the PATIENT information section of his site. Uveitis.org is the website of the Ocular Immunology and Uveitis Foundation, Our Parent site:
Peter McCluskey, M.D.
St. Vincent’s Clinic Tel: 9332-6062
Suite 1004 438 Victoria Street FAX: 9332-6063
Darlinghurst, NSW 2010
E-mail: iritis@ozemail.com.au
Richard Stawell, MD
Cabrini Medical Centre
Isabella Street, Suite 52
Malvern, Australia 3144
Tel: +61 3 9509 4233 Fax: +61 3 9500 9376
Denis Wakefield M.D.
The University of South Wales Tel: 612 938 52351
Professional Suite FAX: 612 93851389
Polyclinic Building
Prince of Wales Hospital
High Street
Randwick 2031
AUSTRALIAE-mail: d.wakefield@unsw.edu.au
Ehud Zamir M.D.
Director of Clinical Training
The Royal Victorian Eye and Ear Hospital
32 Gisborne Street
East Melbourne
Victoria 3002
Locked Bag 8
East Melbourne
Tel 61-3-9929-8533
Swithboard 61-3-9929-8666
Fax 61-3-9663-7203
Email
uveitis
Hi Kylie,
I just read your post and wanted to say hi as my daughter Emily is 9 and has uveitis in both eyes. She was diagnosed when she was 5. We live in Tas and fly up to Sydney every 3 months to do the rounds of all the doctors who are involved in Emilys treatment. We also see professor McCluskey in Liverpool. Hope to hear from you soon take care. Regards Wendy and Emily
Re: uveitis
Hi Wendy
Thanks for your reply. Brendan was in Childrens Hospital Westmead today for steroid injections. Specialist said right eye was very "active" - Its been a long day. We are going back to check pressure in 3 weeks - hope this is OK!! Do you always go to Liverpool for treatment? We sometimes go to Strathfield, and see a Specialist there. I would like to keep in touch with you, where abouts in Tassy are you from?
re uveitis
Hi Kylie,
Nice to hear from you too. We have just got back from Sydney as Emily was there at the Childrens Hospital too to see Melanie Wong who is our immunologist. Funny you should mention about an eye speicalist in Strathfield as we too go there to see Jeremy Smith (is that who you see also). We also see Kathy mcClennan who is at Ryde. We live in Kingston which is about 10 minutes out of Hobart. How old is your son and how long has he had Uveitis?
Talk to you soon
From Wendy and Emily
re uveitis
Hi Kylie,
We go to Sydney every 3 months to do the rounds of the doctors. I think they chose Sydney because Professor McCluskey is the man to see in regard to Uveitis. Emily has Auto Immune Disease and from that she got Uveitis as the disease attacked her sight organs. We are hoping that the Auto Immune wont attack any other organs so she is on Cyclosprin to suppress the immune system. Everything is QUITE at the moment but the main damage has been done. She has had cataracts removed but cant have lense replacement due to the damage that the inflammation has done. It must be frustrating not knowing what has caused Brendans Uveitis and it really is a rollercoaster ride as you dont know where its all going. its nice to be able to chat to you as you understand what its like. Better go so talk to you soon.
Seeya Wendy
Re: Lemon Tree Passage, Port Stephens, 3yr old son with Uvei
Hi Weny and Kylie,
Thank you both for replying to my initial post and it is really great that you have both been communicating regularly.
I have been without a computer for a while and never getting much of a chance to get to an internet cafe, so my apologies for not replying sooner.
We moved in April this year and now live in a place called Bowraville which is about 60 mins drive from Coffs Harbour South West.
Connor is doing well at the minute thank goodness. He hasn't had any activity for about 2 months so I am keeping my fingers crossed that we get another couple of months with no activity and then they might think about removing his cataract.
I wanted to ask you how your kids are coping with having cataract surgery and one of you said that they were unable to put a lens in. How has that affected your childs vision. I hope that they still have plenty of sight and are doing well.
Up until now Connor was being seen once a fortnight so we were travelling to Newcastle once a month and the in between visit was at Port Macqaurrie, thank goodness for IPTAAS, which I am sure you know about Wendy!! I thought my trips were tiresome enough but your trips to Sydney must be very challenging Wendy.
Connor was on methotrexate for a while but has been on azithioprine since about April. It started to work almost immediately. He is still on a low dose of prednisone which I am hoping can be stopped and drops twice a day. He is on a very high dose of azithioprine and so has to have a blood test every month but since we discovered elma cream that is not a worry to him.
He has had a few nights to Port Macquarrie hospital when we thought he had chicken pox which turned out to be flu. but all was ok. We also had a couple of stressful days chasing down a chicken pox immunoglobulan just before Christmas as chicken pox broke out at his pre school. Again all went well.
So that is our update and I hope that we can be in touch again. I am wandering if there is a way to exchange email address without advertising them on the web! If you know how and would like to let me know.
Take care and all the best with the kids
Amanda and Connor
Re: Lemon Tree Passage, Port Stephens, 3yr old son with Uvei
Amanda,
you can private message anyone who allows their account at EzBoards to give access to it. sometimes members will also have their email address accessable to members.
you will note that to the LEFT of each message there is another box when reading exchanges here. the name of the person who wrote the notes NAME is in BLUE. click on it and then you will see their profile. within the profile there is a PM block, this means Private message if enacted by the member you will know once you click on PM. then send them a message.
if there is an email address available for the member it will be on the RIGHT side of the Profile. click on it if active and send an email to the member giving whatever informaton you choose.
if you private message someone, they will get it when the sing in to the site the next time they visit. it could be some time if members only rarely visit the site,
wishing you and connor the very best,
mike Bartolatz
re uveitis
Hi Amanda,
Its nice to hear from you hope you and your family had a great Christmas. Emily and I are off to Sydney once again tomorrow so I wont be around for a few weeks but hopefully we can catch up when we get back. In answer to you question Emily has both lenses removed and she now has very thick glasses to compensate for the lenses, she manages well most times but she has trouble if we go somewhere different as she doesnt know her way around. Her vision in her right eye has gotten worse over the last few months as her cornea is damaged so they were talking about a cornea transplant so we will wait and see what they decide on this trip. Its a worry as the older she gets the more she understands whats going on and no-one knows for sure if she will lose her vision or not. Her school and the sight unit have been fantastic as they try to enlarge her books when they can and the teachers do her drops while she is at school which makes life a bit easier for me as I dont have to spend all day at school anymore. Its good news that Brendans uveitis is quite so lets hope it stays that way. Emily had chickenpox when she was younger so I,m glad she got them when she was little and not now. Well I best go and finish packing so take care and talk to you soon.
From Wendy and Emily
Its been a while since having a look at this site, and by reading all the posts am remembering how informative it is and great to hear about others experiences. What prompted me to have a look is Brendans doctors talking about sending him to an immunologist as the issue of oral steroids keeps popping up. I am not keen, as the steriod injections he has been having have worked well, he is having another one soon and he tolerates them well.
Anyway, would love to hear what others are up to with their treatments.
Cheers
Kylie
Re: checking in
Hi Kylie and Wendy,
Hope all is well with you guys and your guys eyes! Connor is having a few problems. We spent nearly 3 weeks on and off in Westmead at the start of the year. He had a bacterial and fungal infection in his right eye (basically an absess on his eye. Now he has activity again in both eyes and has a band keratopothy in both eyes. He had a cataract removed and lens implant in June last year as well. He was also diagnosed type 1 diabetic last March but he doesn't need insulin anymore thank goodness. We think it might have been one of the meds he was on at the time. Anyway hope you girls hop on hear again and we can catch up again.
All the best
Amanda
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