Hi,
Thanks for your reply. It has really been difficult to find a Dr. in the Toronto area that not only is willing to work with Dr. Foster but that are actually specialist, we found a Dr that treats Uveitis but she does not work with kids.We have been actively reseaching but has proven to be very hard, as I said we found a very good Dr in Montreal but going there is as expensive as going to Boston.
I was hoping you could give some names of Drs in your area, we are now trying to see who can performe the cataract surgery.
Thansk a lot.
Re: Parents and Kids: Introduce Yourself Here
hi were from down under, i have a son who is now 9yrs and has been suffering from uveitis and also vkh autoimmune for the past two years.
i would appreciate any advice or experiences!
Thanks Rowan
Re: Kristen ~ Roger's mom
hi,
im Rowan from Australia, my son Yusuf who now 9yrs old was diagnosed with bilateral pan uveitis 2years ago, the cause was unknown for a good 8months then finally we got some answers he was diagnosed with vogt koyanagi harada syndrome(auto immune illness). he has been on mtx for a year and is on the max dose, only last week drs are considering to move him on t o injections, im tryin to get another opinion too.
We did the MTX by injection for our son who was at 50 mg/week. Although the shots were not his favorite thing, they did help with upset tummy. It is certainly ahrd to decide what to do but hopefully we can provide some help and you can always pop a question to Dr. Foster. he certainly has a special touch with dealing with kids.
Re: Parents and Kids: Introduce Yourself Here
I'm Dawn, Justina's mom.
Justina was diagnosed 2 days ago with chronic uveitis in her left eye "cause unknown". it seem like it came on literally over night. she appears to be a healthy active 8yr old. we just began our battle with this illness, and are determined to find out what is causing it. justina is in great spirits, and conducts her life as if nothing is wrong.in spite of all my fears we are trying to keep everything as normal as possible for her. Justina has a 6yr old little brother named Edward who she enjoys teaching the things she learned at school that day. she also enjoys teasing him every chance she gets. hey, what are little brothers for.
Pars Planitis, vitrectomy
We live in Ca. Our 6 yo daughter Bella was diagnosed with Pars Planitis end of July 2007, after a previous Opth failed to catch it. She's had 2 hemorraghes (R eye) in 6wks. She just had a vitrectomy Oct 11th. Found out she has tears in the retina (R eye). The Dr. did what he could, now we rely on the meds to keep working. Methotrexate so far, we're starting week 10,and the numerous drops of course. Have faith in her Dr.s, all 3 of them. Still fearful, bewildered by this, and keeping the hope that things won't get worse. She's missing at least 3 wks of school, they have been extremely accommodating to this point, that helps with the stress level. We're just trying to keep informed, ask lots of questions...this site has been unbelieveably helpful and her Dr.s are well aware of Dr. Foster and his practices.
Re: Pars Planitis, vitrectomy
Lehanna,
welcome to the group!
a Support group is being formed in the LA Area by a member who is being Sponsored by Narsing A Rao MD out of Doheny eye institute. he is the BEST specialist in California for Posterior and intermediate uveitis issues.
I am the Moderator of the Pars Planitis Forums which is also part of this network of Online support groups associated with DR Foster's Ocular Immunology and Uveitis Foundation.
your situation mirrors that of Renee' who is a facilitator here at the Parent's forum. her daughter Alexa rapidly had problems and MTX didn't work for her. she has had numerous Vitrectomies, just about every drug out there and is now on IVIG therapy. they travel to Cambridge for care since there is no one in Oregon able to treat Alexa.
Wishing you and your child the very best,
Mike Bartolatz www.parsplanitis.org www.uosg.org Learning about uveitis forum facilitator
Pars Planitis patient since 1973
Kelly ~ Aric's mom
am Kelly the mother of a 9yo, Aric, who was diagnosed with iritis yesterday (12/20/2007) It has happened at the end of a week of chicken pox. He was complaining that bright lights hurt his eyes, espically left, and it was all red. The clinic sent us to the opthmalogist for a same day appointment. Aric has it in both eyes he recieved dialating drops and a prescription for steriod eye drops 4x/day. After one day the right eye showed improvement but not the left. Aric also ahs an autistic sprectum disorder.
His 2yo brother Sam also had CP at the same time and his left eye is red. He would not cooperate with the slit microscope exam, so we are not sure and currently just watching.
If the redness in your younger child continues, please return to a PEDIATRIC opthalmologist who can sedate the child for examination. Herpes zoster can cause red eye related to viral conjunctivitis. lets pray that is all that is going on here but to play it safe, please get him examined very soon as if it is the herpes zoster virus and uveitis it will need antiviral meds as discussed by Dr Foster in his response to your introduction.
Wishing you the very best,
Mike Bartolatz
Edited by: Webmaster at: 12/22/07 4:20 pm
Greetings from Annabelle's Mom
Happy New Year to everyone!
My daughter Annabelle (7) has been battling Uveitis for about two years now. It has been a challenge and the disease seems to be winning. She had six surgeries this past calendar year and has lost all vision in her right eye due to a detached retina. She also lost both natural lenses due to cataracts. Her vision in her left eye seems stable at about 20/80 fully corrected.
She saw Dr. Foster last year and we are leaving today to travel to Boston for another visit with him tomorrow. Her local doctor as well as Dr. Foster both indicated she was a severe case.
My husband and I are really hoping for some support. We are a bit disheartened and fearful of what we are almost certain lies ahead. We are far from controlling this disease and don't think we will come out of it with any vision. Our one glimmer of hope is that the MTX that she has been on since February seems to be controlling the inflammation from the underlying disease. The damage that has been done has been from inflammation due to the surgeries to clear the vitreous fluid and remove the cataracts (then to remove scar tissue & repair the detached retina). She will still need another surgery to remove the oil that is helping to keep the retina down (although it is starting to detach again).
Annabelle's dad is Steve and sister is Jessie Mei.
Now I think I am posting in the right spot. LOL Hi I am Lisa, Mom to Lauryn & Joe. Married to Joe. My daughter has Idiopathic Anterior Uveitis. She has had this about 2 1/2 years. She was treated for 2 years for conjunctivitis and allergy eye which she had neither of. I finally took it upon myself to take her to our local eye doc. Where he diagnosed her with chronic uveitis in June of 2007. Her left eye was fixed & needed dilation she was started on pred forte every 2 hrs and cyclogyl 2 times a day. We were sent to a pediatric opthamologist in Atlanta where he found that she had edema on her retina and we had to go back for a steroid injection into her eye. This lasted about 3 mo and her eye flared up again. He also told us that she had a cell in her right eye. We went back to our doctor and after all the research I did on the pred forte realized I couldn't keep her on this for an extended amount of time. Her doctor agreed, but he wasn't sure where to go from there. He sent us to a retinal specialist but before we went there we had a friend that found a list of uveitis specialist and there was Dr. Foster. So I emailed Dr. Foster and was more then exstatic that he wanted to see my daughter. I told my doctor and he agreed that we did find a good doctor. Though he was reluctant to give the referral he did. Things have been rocky with our insurance but finally they agreed to pay for our visits to Boston to see Dr. Foster. So we made our trip to Dr. Foster in October 2007. We came back with a med called tolectin my daughter did not tolerate this well, so we stopped and made another trip to Dr. Foster in December 2007. He told us we need to move up the step ladder. Our newest med is MTX and we are to use the pred forte to keep the flare ups calm until the med kicks in. I have been terrified about putting her on this. She has alot of fear as well. She is afraid of going blind she heard the word chemo drug and seems to think the worst is going to happen. I have spent many a night crying after she has gone to bed. After reassurance from Dr. Foster that she would do fine as long as she was monitored, we have begun this treatment. People at my daughters school have been so understanding about this treatment and the school is willing to waive my daughter attendance and let me know when the school is "sick" so I can keep her home. It has for sure been a roller coaster for us, as it has for many of you. I thought I was alone in this until I came to this forum and feel a sense of warmth. Everyone is so positive and I have been so depressed & my Husband,I sense, is blaming himself. He is so confused by all this and is thankful for my need to find out what this is & what we need to do to keep my daughter healthy & her eyes "quiet". Our #1 Priority,as with the rest of you, is my daughters vision and I am thankful for finding such a wonderful doctor! Look me going on and on please forgive me I tend to ramble on and on! Please keep in touch! You can email me at lcernaro@yahoo.com Hope to hear from you
Re: Parents and Kids: Introduce Yourself Here
Hi, I'm Laurie and my 8 year old daughter Anna was diagnosed with uveitis (iritis)in her left eye on 2/4/08. She was started on PredForte and homatrop. She returned to the doctor on 2/7/08 and the Dr. said the inflammation looked better but there were "many, many, many" cells in her eye and he added Fluorometholone. The Dr. wants her to see her pediatrician to "go on a fishing expedition" to find the underlying cause but her pediatrician is currently out of the country. Should I wait for her ped Dr. or should I insist someone see her to start the testing? She sees the eye Dr. again 2/13 and I have scheduled a second opinion appt. with an eye Dr. at St. Louis Children's Hospital on 2/14. Any suggestions? Thank you!
Re: Kelly ~ Aric's mom
Laura,
Welcome to the group!
contact Dr RAo at WAshington University in St Louis for treatment and diagnosis of underlying conditons. he is the 'expert' there at WUSTL. there is another mom in this group in your area who's child sees him.
please join in the ongoing converstion here at the Parent's forum. Please know that these parents will do all they can to help you and your daughter through this and can help you with learning issues, the Law that governs learning disabilities too.
How much do i tell my 16 yr old daughter? (Tasmania)
Hi everyone, Im Ann, mother of Emily diagnosed on Christmas eve with Uveitis and MF Choroiditis (the day before her 16th birthday!)and now has damage to left macular. She is doing year 11 and coping really well, with her remaining eye. She is being weaned off steroids, her only complaint is her round face and pimples. Im not travelling so well.All the info Ive been getting on line hasnt been very reassuring. Does it always come back? She is in really good spirits,I feel in her case it's a cae of ignorance is bliss but this goes against my principles. Any advice?
Ann
Son recently diagnosed with Pars Planitis
My son is 6 and had his first office visit on Jan. 17, 08. He suddenly couldn't see out of his left eye and they said his vision was 20/800. Nov. 18, 07, his school exam showed normal with 20/20 in both eyes. On Feb. 1 he had steriod injections and has responded well. He is showing signs in his right eye also and he takes pred forte 3 times and day and cosopt ocumeter 2 times a day because he has developed glaucoma. He has had ultra sounds on his eyes, an MRI and extensive blood work and everything has come back normal. I can't understand what may have caused this. He has been diagnosed with pars planitis and we have no family history of anything related to this. I feel like his doctor is very concerned and has been very thorough but I wonder if we should have a second opinion from a doctor who specializes in this.
Brooke
My daughter is 5 and 1/2 yrs old and was diagnosed with idiopathic bilateral uveitis in February 2008. We started with pred forte drops every 2 hours and homatropine drops twice daily. She has been through 2 rounds of steroid injections into the eye (March & May) and was started on Remicade on June 30th and Methotrexate in July. So far the remicade and methotrexate have worked tremendously. Her opthomologist cut back her pred forte to twice daily and her homatropine drops to only at bedtime. On Sept 11th she had cataract surgery on her left eye (which was her better eye) and hopefully will be able to have surgery on her right eye before the end of the year. I just hope and pray the remicade and methotrexate continue to work and she does not have any severe infections where she will have to suspend therapy.
Re: Parents and Kids: Introduce Yourself Here
Hello, my 10 year old daughter was diagnosed with Uveitis and has been undergoing treatment since May. She just started taking Methotrexate a couple of weeks ago. From what I understand this takes some time to get into your system and start working. Was wondering if there is anything I should be watching for???
Re: Parents and Kids: Introduce Yourself Here
Hi, my name is Lisa my sons name is Alex he was diagnosed with pars plantis october 07, Its really been a nightmare because we lost our 15 yearold daughter in sept 07, alex when diagnosed had vision of 20/80 right eye and 20/15 left eye. they first tried high dose of oral pred when that didnt work he had cryo and steroid injection in right eye, then in Aug his left eye went to 20/30 he had cryo in left eye and steroid injection in both eyes, its now sept his right eye was tested today at20/100 left eye at 20/60 poss caterac developing in right eye and very high cylinder esp in right eye. gave him glasses to correct to 20/50 to give temp relief, and on pred forte 3xs a day until he gets in with his other eye doc, Alex also has athsma and many allergies including food. We are at our wits end with this and Alex struggles with grief of his sister and his declining vision, he says he only wants to be normal
any advise would be great!!!!thanks, Lisa
Re: Parents and Kids: Introduce Yourself Here
Hi! My name is Amy. I am a stay at home mom of 3 kiddos. Kailey 10, Dillon 7 and Jenna 4. Jenna was diagnosed with JRA in July of this year and more recently Uveitis. She has been on pred forte but getting worse. We are waiting for an appt w/ a local specialist. I also sent an email request for an appt w/ Dr. Foster. We feel SO lost in all this. I am thankful for finding this board. I am going to go look around. See what I can learn. Thanks.
Emerson Boutte
Hello to everyone. My name is Krissy I am married to Daniel and we have 3 beautiful children. Emerson our oldest is 6 1/2 years old and was diagnosed with Systemic Juvenile Rhematoid Arthritis since she was 15 months old and Severe Uveitis at 3 yrs old. We seen Dr.Foster in July 2008, due to Hurricanes in our area we didn't switch her meds and as of Friday we were told that she now has cataracts in her left eye. We are from the New Orleans area and would like to know if there is anyone else out there close to us that I can speak with? We are completely devastated by this news. Our 2 1/2yr old is also ANA positive but has no eye problems as of now. Any help and advice would be greatly appreciated. I have sent Dr.Foster an e-mail and hopefully he can help us get this back under control.
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