INTRODUCE YOURSELF

This is a place where parents can interact and gain support for medical, emotional and ongoing issues with School.

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Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

INTRODUCE YOURSELF

Post by Mike Bartolatz »

this is a place to introduce yourself. this way all of the parents can look back to get an Idea about who you are and what your story is.

Wishing you the very best,
Mike
Last edited by Mike Bartolatz on Wed Feb 07, 2007 11:00 am, edited 2 times in total.
Mike Bartolatz
Moderator
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Mike Bartolatz

Post by Mike Bartolatz »

I'm Mike Bartolatz. I have had uveitis for many years having come down with it as a teenager. I recall the difficulties that I had with School and what would happen to me in the future. back then there was NO support available and no information about uveitis, it's treatment or causes available to me. This forum is a place to tell your story.
I have been involved here at the Iritis.org site for over 8 years now helping others and hoping to help to prevent unnecessary loss of vision in childeren and adults.

Wishing all the very best,
Mike
Mike Bartolatz
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rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

I'm Renee'

Post by rtaunton »

My 11 year old daughter has had uveitis since she was 6. The surgeon who did a vitrectomy to repair her vitreous hemmorhage thought the scarring on the eyes indicated that she had uveitis since she was quite young. The first year of treatment included steroids only. This is when most of the damage took place. The clock does tick with uveitis, and I learned this the hard way. Many injections, three surgeries, five different medications, four doctors and five years later, my daughters bilaterial panuveitis (mostly intermediate) is now stable.

I'm just a mom who is passionate about helping and meeting others who are in the same boat. You have to listen to your gut, and you need to educate yourself about uveitis and what the treatments are all about. Not all doctors are created equal. Uveitis is rare, and so are the doctors who know how to treat it. The tacked posts that Mike have put up will give you so much knowledge. With knowledge comes power; the power to be the best advocate for your child. No one knows your baby like you.

Breathe (a lot) and remember that this is a long journey,
Renee'
Renee'
Oregon
maya&kris
Posts: 3
Joined: Sat Aug 11, 2007 3:26 pm

Amherst, MA Mother& Daughter both with iritis need help!

Post by maya&kris »

My 11 year old daughter and I both have iritis. Mine is pretty quiet but my daughter, Maya, has recently been diagnosed with glaucoma and a cataract and has been on methatrexate since July. It's breaking my heart to see the changes in her since she started this drug - fatigue, mood changes, spacey. She was diagnosed by her rheumatologist with undifferentiated spondyloarthropathy last fall when she had knee inflammation that required a cortisone injection. The iritis was caught in December and we were tapering steroids with success until the summer when both her inflammation and pressure went up. Then followed a very confusing time with differing diagnoses
between her local opthamologist and Dr. Stephen Foster. Anyway, I could use some support from another parent. I think I'm wasting energy either blaming myself or doctors for what appears to have been preventable optic nerve damage. I imagine there is a more positive way to journey through this!

Kris
mom & 11 yr old daughter, both with iritis - yikes!
rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

Kris

Post by rtaunton »

I will reply to you in the other section....

Renee'
Renee'
Oregon
clarissa_lea
Posts: 3
Joined: Sat Feb 21, 2009 7:35 pm

Re: INTRODUCE YOURSELF

Post by clarissa_lea »

Hello my name is clarissa. I have a 10 year old daughter with uveitis. She was diagnosed Feb 12th. we have been to one doctor or an other for 8 straight days. she has been poked and proded every one of those days with no more information than we started with regarding what might be causing it. She went from 20/20 vision bilateral to 20/200 right and 20/80 left. we are using durezol every 6 hours down from every hour and nevanac and cyclogel 2 times a day along with oral prednisone twice a day. She has an appointment to see a uveitis specialast on the 3rd of march but i wonder if that will be too late. Before the uveitis she was healthy and very active . now she is tired with red cheeks and redness under her eyes. she has also been suffering from bloody nose on the right side. She now complains of back and stomach pain. What i really want to do is take her to the childrens hospital in st louis. But the i think i might be being over zealous. What do you think. I am afraid that she is going blind and i am not doing enough to save her sight.
Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

please contact dr Joseph TAuber in St Louis, MO, he is an Ocular Immunologist.
has she been tested for the HLA B27 gene sometimes seen with uveitis and some forms of arthritis and Irritable bowel disease?
the NSAID eyedrop taken will not help. she needs corticosteroid eyedrops if this is iritis. if it is intermediate uveitis sometimes known as pars planitis or posterior uveitis then eyedrops don't work and systemic treatment is needed to stop the inflammation. if the uveitis specialist can determine a cause other than from a bacteria, virus or other pathogen, then sometimes times the DMARD drugs are needed to stop the inflammation. Methotrexate, Cellcept and other drugs are sometimes needed. if it is pars planitis and it can't be stopped, then surgery is sometimes the 'next step' in a steroid sparing approach to treatment.

I'm here as well as Renee' to help you through this.
I'll get her to welcome you too. her daughter was 6 when she came down with uncontrollable uveitis. after a very long time with multiple surgeries and many of the drugs used to control this stuff, she has been put into remission and has EXCELLENT vision at this time.

I was a teenager when I came down with iritis back in the Mid 1960's so to some degree I can empathize with your child.

Wishing you the very best,
Mike
Mike Bartolatz
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Mike Bartolatz
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Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

Joseph Tauber, MD Background Publications
4400 Broadway, Suite 202
Kansas City, MO 64111
Tel: (816) 531-9100 | Fax: (816) 531-9105 | Email

here is contact information for Dr Tauber, he has another clinic in ST Louis if I recall correctly. call the above number and ask about ST Louis information for him, he trained at Harvard Under DR Foster the top Ocular Immunologist in the World.
other parents are taking their kids to him and are very pleased.

wish you the very best,
Mike
Mike Bartolatz
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rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

Re: INTRODUCE YOURSELF

Post by rtaunton »

Hi and welcome,

The steroids could be making her cheeks red, as well as upsetting her tummy. It will help to put out the inflammation in the eyes, though. March 3rd, is just around the corner, but if in your gut you feel she needs to be looked at sooner, call the office and ask them to bump it up. If they are unwilling to do that, change doctors.

Be prepared for a long journey fighting uveitis. You can win the battle, though. It sounds like you are doing everything you can, and in a quick amount of time as well. I hope you can get into the specialist that Mike listed. He knows what kind of meds that need to be used, and having a steroid sparring stratedgy is so important.

Let us know how the appointment goes. I'll be thinking about you!
Renee'
Renee'
Oregon
clarissa_lea
Posts: 3
Joined: Sat Feb 21, 2009 7:35 pm

Re: INTRODUCE YOURSELF

Post by clarissa_lea »

thank you for your words of wisdom. she was on predforte gtts first and did not respond that is why the change to durezol. the redness in her eyes is almost gone, but she still has trouble seeing. her HLA-B27 was negative along with lime titer, ana, ace, rpr, rhematod factor and chest xray. I will call the doctor you sugested today as well as call dr rao to see if we can get her in sooner
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

Dr Rao is an uveitis specialist, hopefully you can get the appointment moved up. it sounds like your current doctor has done good exploratory work. does she have any joint pain which might indicate presence of Juvenile Ideopathic arthritis as a possible connection to her uveitis?

where in the eye is the inflammation located.

her vision can be affected by the drops used to prevent adhesion between the iris and the lens, the dilating drop. often vision returns to normal once the inflammation is stopped and the drops are discontinued. this takes several weeks depending on the type of drops used. some take several weeks to get out of ones system.

Wish her the best,
Mike
Mike Bartolatz
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clarissa_lea
Posts: 3
Joined: Sat Feb 21, 2009 7:35 pm

Re: INTRODUCE YOURSELF

Post by clarissa_lea »

thank you for dr tauber information we have an appointment tomorrow. i plan on keeping the appointment with dr rao for the 3rd. as far as joint pain she stared conplaining of hip pain after this all started. she has also complained of pain around her achilles tendon in both ankles. this is all new since the uveitis. i picked up medical records today. upon reading them i found that they do suspect pars planitis. which was never disscussed with me at any of her appointments. hopefully dr tauber will be able to help us. thanks again...... clarissa
Mike Bartolatz
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Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

Tauber is wonderful from feedback here and other sites.
pars planitis is NOT treated with corticosteroid eyedrops. it is either treated systemically with oral steroids or by injection to tissues SURROUNDING the eye, not into it. once inflammation is controlled Immunomodulation using DMARD drugs such as Methotrexate in conjunction with Cyclosporine are used to try to stop the inflammatory process or surgery is done to remove the material in the middle part of the eye called the vitreous along with either endolaser or cyrotherapy to the pars plana to seal off the area where the exudate appears as 'snowballs' or if allot of exudate is present then it is referred to as 'snowbanks'.
I battled pars planitis for many years starting as iritis when I was 16 and then changing to pars planitis in my early 20's. I only had corticosteroids and they caused elevated pressure which in turn has caused loss of vision. I also developed cataracts, epiretinal membranes (scabs over my macula from which I see) and Cystoid macular edema which is pockets of fluid under the surface of the macula. I was only given steroids. today there are allot more options, ones which can get one to DURABLE remission when a true expert such as Dr TAuber is involved in care. I have sent several parents with kids to him as well as others from this site. everyone has given positive feedback. he trained under Dr Foster in Cambridge, MA and got his fellowship level speciality in Ocular Immunology and Uveitis from Harvard and the opthalmology clinic of MEEI.

stick with Tauber if you can, forget going to Rao.

mike
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schizinsky
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Re: INTRODUCE YOURSELF

Post by schizinsky »

Hi, my name is Sandy. My 16-year-old daughter, Eliza, was diagnosed with anterior idiopathic uveitis almost exactly four years ago. With the exception of a brain inflammation (acute disseminated encephalomyelitis) that occurred in the summer of 2005 (and that no one has been able to link to the uveitis), she has no other health problems.

She has been in the care of Stephen Foster almost the entire time, and has been on every drug typically used in recalcitrant cases. Although some of the drugs did seem to control the inflammation, they made her too sick to attend school, so they were discontinued. For the past three or four months, she has been on Xybron drops, which seemed to be working well; however, her numbers have started to creep up.

Dr. Foster has proposed remicade or humera, but in the meantime he's taken her off the Xybron for a month to find out whether it is actually having an effect. So far, we've all been able to maintain our sanity--more or less--but the thought of trying to persuade the insurance company to cover remicade or humera---given that Liza does not have JIR---has really gotten me down.

I'm grateful to be on this list. I've been trying to go through this on my own, and I'm getting worn out.

Thanks for listening.
Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

Sandy,
it saddens me that you and your child are going throught this difficult case of uveitis.
I do hope that you can get the Biological Response Modifier, TNF A blocking drug approved. uveitis is an orphan disease process in some cases and through the Orphan Drug list it might be able to persuade the insurance company to pay.alternative is to apply to the manufacturer on humanitarian grounds to help pay for the medication. even if you make up to about 60,000 a year, they will sometimes help with the cost of the medication.
Doctor Foster's support network has a Parents Forum that I encourage you to post at> http://www.uosg.org
I moderate the Learning about Ocular inflammatory Disease Forum there for him. I can answer questions there if you like or we can work here. Renee is the forum moderator both here and at the UOSG site: http://www.uosg.org
I'll see if I can get her to respond to you here. You are very fortunate to have the very best Ocular Immunologist in the World guiding care for your Child. DR Foster truely cares. FYI, his wife lost signifcant vision to uveitis related to JIA and because of this he has a very special place in his heart for kids and all of us with uveitis for that matter.

her daughter first came down with intermediate uveitis at the age of Six and it has taken about 8 years to get her daughters uveitis under control but it was a very difficult struggle traveling from the Coast of Oregon to Cambrige to get there. her community aided her in costs not covered by insurance. Small town USA came through whereas big city people can care less in many instances.

I came down with uveitis at about 16 and am almost 60 today. I was told I would go blind if the steroids didn't work and they were the only option back then. I've had a few major flare ups over the years and have significant vision loss because of them and perhaps lack of an alternative to corticosteroids. Please know I will do all I can to help you through this.
also know that you are not alone.

wishing you the very best,
Mike Bartolatz
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