Hello everyone, and thank-you all for the great support you all offer on the site!
My name is Melissa, and my 3 year old Daughter Hannah was diagnosed yesterday (4/14/06) with JRA related Iritis. She was actually diagnosed with the JRA in Jan of 06, and the Dr, wanted her to have the slit lamp eye exam. We were finally seen yesterday and we found out then that she had the Iritis which is related to the JRA.
I am still so unsure of what to expect from this condition as I am still researching and trying to figure it all out. He did prescribe the Predforte drops to be taken 3 times daily, until our next visit in 2 weeks.
These next 2 weeks are going to be just miserable as my daughter hates to have these drops put in her eye. We have tried letting daddy lay on the couch while I give him his eyedrops (Visine) and she still will not let us do it willingly. I have also tried bribing her (which I know is not right, and I hate that too) without success. Does anyone have any advice on giving eyedrops to an extremely strong willed child?!
Does anyone have any advice, or information that I should know about, or questions that I should ask the Dr when we see him next?
thank-you all for your support!
Melissa
(Wife to Matt, Mommy to Hannah 3, diagnosed with JRA related Iritis on 4-14-06 and Dylan 23 months)
I have twin 13 year old boys that have Pars Planitis. Jason was diagnosed when he was 6 and Jeremy when he was almost 8. Both of them developed the disease in the left eye.
Jeremy had bleeding in the eye, so he had laser surgery and one steroid injection shortly after the disease was diagnosed. Thankfully he has been stable since then.
Jason over the years and at different times was treated first with oral steroids, then Kenalog injections. He was also put on prednisone drops and is also currently using Xibrom drops.
When Jason was 10 his right eye became inflammed. He ended up having a vitrectomy in the right eye in December of 2003 and he has been stable in that eye since. The left eye continues to flare, and after 7 1/2 years of injections he now needs cataract surgery.
We found this wonderful Web site last fall and made the trip from Wisconsin to Boston to see Dr. Foster at the end of March 2006. He had some great recommendations for Jason's care. Unfortunately, we are having difficulty getting the doctors here to cooperate with Dr. Fosters advice. We are beside ourselves on how to get the doctors here to take Dr. Foster's advice and recommended treatment.
Since our visit to Dr. Foster, Jason's cataract became worse. Two weeks ago, he suddenly went from 20/40 vision to no longer being able can see any definite objects, only blobs of light and color from the left eye.
We have further recommendations from Dr. Foster for Jason's immediate care, but still the doctors here in Wisconsin do not want to follow it. We are very frustrated.
Karen
My Husband-Jeff and two other sons, Daniel 18, Brandon 16
From Southwest Wisconsin
Re: Parents and Kids: Introduce Yourself Here
Hi, My name is Joy, my daughter is Leslyn. She was diagnosed with bilateral anterior uveitis in mid-July, just two weeks before her 14th birthday. She has been on Pred Forte since and is also using Atropine drops every other night to keep her eyes dilated. We've had blood tests, brain MRI, chest X-ray, and visits to Rheumatology, NeuroSurgery, and NeuroOphthalmology. We're seeing an Ophthalmololgist and a Pediatric Ophthalmologist weekly (alernating). She has a spinal tap scheduled for this coming week.
This has been a long, frustrating road. I'm really glad I stumbled onto this message board.
Re: Parents and Kids: Introduce Yourself Here
Hi all, Actually, I'm not just Evan's mom; I'm Kaila's mom too. Evan is 9 and in 3rd grade; Kaila is 6 1/2 and in first grade. Evan is the uveitis patient here; he lascerated his right eye with an icicle last Feb ('06)(your mother always warned you you could lose an eye that way!), and after it healed, developed sympathetic ophthalmia in both eyes. We've been seeing Dr. Foster since April, and he's been treating Evan with a combination of immunosuppressants (Neoral and azathioprine). He started out with prednisone, prednisolone drops and cyclogyl, but was weaned off of those. All seemed to be going well, but things flared up a couple of weeks ago, so we're back on the prednisone and prednisolone (drops hourly). He's discouraged and feeling bad about himself. I'd love to hear from folks with experience with these or other immunosuppressants, and also about how sibs handle the attention given to sick, unhappy kids.
Shelly mom of Karen
Hi I am Shelly, mother of Karen who is age six with chronic anterior uveitis in both eyes and JRA, just diagnosed two months ago. The cloudy spot on her eye was noticed after she had a very high fever with chicken pox, where she was screaming "my eyes, my eyes"...the doc said it was not related to the cause of the uveitis, but that the fever/herpes virus could have intensified what was already there. She's on her second round of the pred forte and atropine drops. Now it's six weeks of one drop in each eye a day. She has damage on her eyes from scar tissue and the vision has gone down from 20/20 to 20/40 so far.
Re: Parents and Kids: Introduce Yourself Here
hi my name is shelli and my 6 year old daughter has uveitis in both eyes and the swelling will not go away and we have found out that if we try to take her of meds. then it comes back fast and hard. I don't no what to do about this and it doesn't seem to be geting better. now she see three dot in her right eye and was cot at school trying to catch them. We are see specialist and they keep telling me that some kids just have this and to keep on the meds. which is drops(pred fort) every 2 hours in the day and maxidex at night. I am scared for my daughters sight and the doctors and optimoligist have done one blood test and one x-rays and had her seen from a person for rheumatoid arthritis and she doesn't have that so we are back to square one what is happening with my daughter and they say its nothing. I get call all the time from school because when my daughter eats she feels sick and the headaches . What do you do with the schools or family and friends when they don't understand? My husband beleives if you don't talk about and don't belive it ,it will go away. So i'm not aloud to say thing about it around him.He says she is fine and that her eyes are getting better every day becuase he prays for her. I'm sorry i don't have the faith he does and i worrie about her. So if any one can help me out or talk to me i would really like to find out more about this stuff so i can help my daughter thank.
Re: Parents and Kids: Introduce Yourself Here
We are looking for some support and some answers maybe? My son Briten was treated for pars planitis one year ago. He was 11 then and now at 12 he is due to be treated again this Friday. They injected steriods the first time and are going to repeat the treatment again in both eyes, one week apart. I am finding it difficult to read the doctors! In my research it seems that injections are used in more severe cases and that repetative use can cause damage aswell. What is "Long Term"? When first injected, his sight was at 2200, but returned to 20/30. Is 2200 really rare or common for this condition. They can't find a reason for this in him and they have run several blood tests. I'm just looking for straight up answers! And some insight into the future! Living in Idaho.
Re: Jen, Andrew's mom
I just stumbled on this forum, as a result of antother sleepless night. I live in Idaho and have a 12 year old son Briten, who was treated for Par Planitis in Utah last May (2006). I would be interested in finding out what Doctor's you have used and any advice you have. He is due to be treated by steriod injections for the 2nd time this week, and he is not at all excited!
Karen
Karen, Greg, & Grant
Karen & Greg, Grants mom & Dad
Grant 10 yrs old
Diagnosed in Oct of 2006 when scar tissue was found in his eye. Now recently we have discovered a flair up in the other eye. Grant has no outward symptoms of a flair up which is scary to me. We are going to see a pediatric opthamologis next week to hopefully determine the cause for the iritis. He does have a mild case of scalp psoriasis that maybe be the cause. I really appreciate this site, I have already learned a great deal from it.
Evan has never had any redness or pain. His vision, since the onset (when he said our faces looked distorted with a black hole for a nose), has been good, thank God. His flares have been caught by Dr. Foster each time. His uveitis is sympathetic ophthalmia, brought on by an eye injury last Feb. So at least we were focused on his eyes when it developed. I imagine it's extra scary when there's no discernable cause. Hang in there!
What kind of treatment is your son taking and how often are your visits to doctor stephens? Also how often does he have flairs? Sorry, I have a lot of questions. Grant's vision is about 20/25 so luckily that hasn't even been affected.
Evan sees Dr. Foster every 6 weeks when things look good. We're coming back 3 weeks early this time, not because of a flare, but because his white counts are low. Since the initial barrage of prednisone, prednisolone drops and cyclogyl drops, he's on two immunosuppressants: azathioprine (Immuran) and cyclosporine (Neoral). (we've been back on the prednisolone a couple of times for flares)He has his blood tested at every visit to be sure that the meds are still doing only good and no harm. They monitor kidney function most closely, I think. So far, so good, except for this latest visit. He's been off the azathioprine since the last visit to see if that affects his white counts. We'll see--he had just gotten over his 2nd bout of strep throat before our last visit, and that MIGHT have something to do with the white counts, though Dr. Foster thought that was unlikely. What is Grant taking?
My daughter Juliris was diagnosed with JRA and Chronic Uveitis when she was almost three years old at this point she had cataract removal, vitrectomies, in both eyes and retina detachment (right eye). For three years she has been treated with Methroxate .08 weekly and Cyclosporine, Pred forte, and Atropine. But her uveitis is not in remission yet. I took my daughter to Dr. Foster when she was first diagnosed and he gave my daughter doctors some recommendations in meds to treat her but my daughter’s rheumatology was not comfortable prescribing them. I took my daughter back to Dr. Foster on June 22, 2007 and I was told to look for a pediatric hematologist/oncologist that can help me out. I am really scared it seems that the uveitis will not go in remission. Now my game plan is to look for the specialist that Dr. Foster recommended and hope for the best.
hello
i was just reading your message- i am also near el paso - i live in las cruces- it would be wonderful to find someone near my area- i don't know if i will hear from you since your posted was back in 06- please reply back- i am looking for good opthamologist
Re: Parents and Kids: Introduce Yourself Here
hello everyone- i am so sorry - i have been posting without any introduction- my name is diba - i have two daughters- my youngest daughter sara was diagnosed last year with JRA/anterior uveitsis- the JRA has been quite but the uveitis is all by itself-i never knew that they would be ever related-anyway- i have seen dr.foster twice now from new mexico- now the hardest ordeal is to find the right dr to treat this monster- but this website has been wonderful for parenst like me seeking help and feeling not alone in this journey of mine
Kristen ~ Roger's mom
My son Roger is 9 yrs old. He is a twin. He was diagnosed with Uveitis October 06. My name is Kristen and I am his mother.
He is currently seeing Dr Kleingittleman (Rheumatology @ Children's Hospital), Dr Lane (Kidney specialiste @ Children's) and Dr. Tessler (uveitis specialist). He is being treated for Uveitis and hypertension.
He is currently taking. Methrotrexate (1xwk)
Pred Forte (4xday)
Cosopt (2xday)
Homatropaire (1xday)
Travatan (1xday L eye)
Enalapril (1xday - blood pressure med)
Alphagan (2xday)
So as you can see he is on alot of medication. Next week we are going to move to injections of methrotrexate and looking to do remicade or humaria (not sure if that is spelled right). We are also looking to get a 2nd opinion with the Rheumatology. Does anyone recomend anyone in the chicago / milwaukee area? We have been treating this since Nov 06 and he has delveloped the hypertension as well. We have done numorous blood work, kidney ultra sounds and echocardiogram and still have not found the link to the uveitis. He does not have JRA. So things have been very stressful.
He is a great kid. Been so awesome about everything. I am honestly a little overwhelmed.
Does anyone have any suggestions or info they can pass along? I am learning so much but I know there is so much more info. We are trying to make all the right decisions. I am not sure where to get accurate info on remicade, humaira? What are the side affects? What to be looking for and asking the doctor. I want to make sure I cover all grounds.
Re: Parents and Kids: Introduce Yourself Here
Hi,
I have a 9yr old daughter with chronic uveitis. She was diagnosed with JRA at the age of 2 with a positive ANA. When she was 4 she was diagnosed with uveitis. She was treated with steroid drops and steroid injections with no results. She is now legally blind in her left eye. We have tried methotrexate and remicade. We visited Dr. Foster in 2005 and took his finding and suggestions back to her ped. opth. here. Dr. Foster was great and I wish we had him here in Georgia!! We are still battling with the uveitis and glaucoma. Tough road but she is one tough little girl!!!
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Introduce yourself
Hi My name is Thargelia,mom of Victoria dx with chronic anterior uveitis in both eyes and ANA positive .Last September she told me she could not see well from her left eye, I took her to the optometrist thinking she was going to need glasses, I was astonished, to say the least, when the Dr. told she was legally blind on one eye( 20/200) and that she will arrange an appointment with an specialist, since we live in Canada and the medical system is socialize and you do not have much saying .We got an appointment for March 07, Our Family Dr and the optometrist though that was unacceptable and star fighting the system, finally we got an appointment at sick children hospital in Toronto 4 weeks later. The Dr. told us that most kids end up being blind. We were so scare but at the same time though “There must be something somewhere “ and after much research found Dr. Foster. Our first appointment was on October, and as you said he gave us ammunitions. We did try to make the Dr.here to work together with him, that was just a wishful thinking, at least we got her to star MTX, but she did not wanted to taper the steroids. The dr here insisted Victoria had to have surgery in December. We decide to get another opinion and went to see an specialist in Montreal he told we should not operate, the eyes were not quite. Since we did not agree with the surgery we got remitted to another specialist but got to see Dr. Foster first. By then Victoria eyes were not quite and she have develop Glaucoma, MTX was increase and steroid taper. We decided to travel to Boston on a regular basis. Now Victoria is doing great her eyes are quite, glaucoma is under control and her vision in the left eye has improved 20/50, now is time to plan for surgery and to make the decision about IOL, she is ck regularly by the rheumatologist, and so far so good. As I would say being scare is not that bad it give us the strength to fight for our kids.
Hope to have the chance to cominicate wth parent that are going through the same.
We are from Alberta and our son's treatment plan is being led by Dr. Foster. thankfully, over the past 4 years we have only made 3 trips to Boston and we have a great group of doctors here now. It did take time to find the right local expertise, and to find doctors who are willing to work collaboratively with Dr. Foster. Our son has beenon immununomodualtion therapy for over 4 years. He was on methotrexate which was able to get his pan uveitis all cleared and off all drops, however he was unable to remain inflammation free when we tapers. he is now on chlorambucil and again, off all steroids. WE are hoping that this one will work when we taper.
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