Our 9 year old daughter has iritis

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Mike Bartolatz
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Our 9 year old daughter has iritis

Post by Mike Bartolatz »

viewtopic.php?f=2&t=3597

I posted this from the Introduction forum so that members can comment.

mike
Mike Bartolatz
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rtaunton
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Re: Our 9 year old daughter has iritis

Post by rtaunton »

Hi Rachelle,

I hope you got in touch with the Dr. that Mike told you about. There is even an uveitis support group based out of Canada that Saletta (another support group parent) helped to put online. I'm not sure if Mike gave you that link, but if you can't find it let us know. Uveitis can be so tricky. You think you have it quiet (with drops or meds), then once discontinued it can come right back. That usually means that it is time to get on an immunomodulatory medicine, one that will actually help to train the immune system to quit being so darn active and act off. It takes two years on a med, once you find one where you can discontinue steroid drops or oral steroid and stull have no inflammation, than you can start to taper off. It does work, but it is ROUGH to get to that point where you can actually see light at the end of the tunnel.


Welcome again and let us know how you are doing,
Renee' (parent of a 13 year old girl who has been off all meds except xibrom eye drops for one year)
Renee'
Oregon
brmorris
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Joined: Sun Sep 13, 2009 11:02 pm

Re: Our 9 year old daughter has iritis

Post by brmorris »

I have to say... I'm feeling quite overwhelmed. I didn't realize how serious this could actually be. A year ago when she first got it, it disappeared right away and when it flared up again just before Christmas, it was the same. This time, has been a complete different story. It has been a couple months now and it keeps going back and forth between eyes. We see our doctor again tomorrow, so am praying that both eyes are quiet now.

Our doctor has told us that this is normal... it will flare up in spring and fall and will usually be quiet in the winter and summer. He has also told us that this is the only thing to do and there isn't anything else that will help. She will deal with it the rest of her life, but will probably quiet down as she goes into her teens and adult, until probably having kids. I recently found out that a friend of mine has iritis and this has been very true for her.

However, after hearing that we could be free from drops, etc.... sounds great. I'm not really sure what my next step should be!? I will check out the other websites/forums that Mike, you recommended.... thank you. This will definitely take some time, which is really hard... we have 4 other kids that are 6,3 and 10 month old twins. All these appointments have been really hard, but I REALLY want to get more information. I have just felt, for a long time now, that there is something more- not sure what, but maybe this is it!?

Thank you... and here goes more of our journey...
Rachelle
Mike Bartolatz
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Re: Our 9 year old daughter has iritis

Post by Mike Bartolatz »

uveitis that ping pongs between eyes is often related to the HLA B27 gene. this is autoimmune in nature and has been triggered in your child by exposure to a pathogen at some point prior to her getting uveitis. often it is from what is called an enterovirus or other bacteria causing a bout of GI stuff. the immune system irradicates the pathogen but it keeps on making the white blood cells attacking the HLA B27 gene on the surface of the cells. this is why one has to use systemic medications to retrain the immune system to stop making these cells and thus stop the attack on the eyes. something as simple as adding a Non Steroidal anti inflammatory medication orally can stop the attack on the eyes.
the problem with what your doctor is saying is that in children (please read articles at the beginning of this forum) the attack can often quickly cause permanent damage to structures of the eyes. the topical steroids and the inflammation can both cause cataracts to quickly form in kids. other things can happen as well so please watch your child closely as they think change of vision is 'normal' and won't know to tell you. an increase in floaters can be significant.
if she has to get 'closer to the tv' that means vision is being affected. ask if she sees rainbows around lights ( possible elevation in pressure) starburst like effect when seeing lights at night (possible cataracts froming) or big blob like floaters (possible retinal bleeding) from a detatched retina or tear. if she has blur of central vision, a membrane could be growing on the surface of the retina called an epiretinal membrane or Cystoid macular edema, fluid build up below the retina could be occuring. any new pain should be also be brought to the attention of the doctors right away.
if at all possible please get in to see DR Heston in Edmonton or DR Kerhani in Calgary for a consultation.

I was only treated with steroids over many years. I got iritis back in high school in the dark ages of uveitis treatment. I have significant changes inside my eyes with permanent loss of vision from all but the detached retina mentioned above. a steroid only approach to treatment will eventually cost her permanent loss of vision just as it has in me. I wish alternative to steroid was made availabe to me.( I do this free support work to prevent this stuff from happening to others, especially the kids who have no way of speaking for themselves, teaching the parents that there is a better way to treat this stuff.

Wishing you the very best,
Mike
Mike Bartolatz
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brmorris
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Re: Our 9 year old daughter has iritis

Post by brmorris »

We had another appointment today with our doctor. As the pattern has been going this time around, it is definitely ping ponging (as you put it) back and forth, because now her left eye is moderate again and her right eye is almost quiet. We are down to drops 4 times per day in the right eye and back up to drops every 2 hours in her left eye for 5 days, then down to 4 times per day. We are booked back to see him in 2 weeks again, but he said that the 4 times per day will be long term... although I'm not sure what exactly "long term" means... months I know for sure.

From what you are saying, this is NOT good. I asked him many questions about the iritis... like if it could possibly be in another part of her eye and that is why it isn't clearing or if it could be an indication of some other disease, but he went through many scenarios and said that he would see this and that if it were something else. Along with what else you were talking about, it seems like it is what you are saying. Also... she asked me the other day about seeing "spots" and we asked her doctor today about that and he said that it was the build up of white blood cells that would be causing that.

Now, I am quite worried. I didn't realize that this could be and is so serious! I'm very thankful that I have found this site and all your information. Thank you! I looked up Dr. Heston's name in the phone book and will try to call tomorrow. Hopefully we can get in with him right away. At any point, I will be printing off these messages and taking them into our doctor. He was quite interested in where I was getting my info. from and was even more interested when I told him about the forum. He said that I was getting great info. and asking a lot of good questions. This made me feel a lot better in dealing with him. Maybe this information can help him with his patients better too!

Thanks again.
Rachelle
brmorris
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Joined: Sun Sep 13, 2009 11:02 pm

Re: Our 9 year old daughter has iritis

Post by brmorris »

I was able to make an appointment for Erika with Dr. Heston here in Edmonton in 2 weeks. The nurse said that he wasn't an iritis specialist, but I had said that he was recommended to us, so she booked the appointment. What should I be asking him or what information should I be giving him?

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

Re: Our 9 year old daughter has iritis

Post by Mike Bartolatz »

Thank you for reaching out for another consultation. in about half of all uveitis patients using topical steroids and injectible and oral steroids (they all add up)
after about 850 drops of pred 1% cataracts form. over time others (like me) develop glaucoma at pressure above a 24 or so.
I would ask him to implement a steroid sparing approach to treatment as outlined in the treatment algorithem for anterior non granulomatus uveitis (autoimmune related). when a pathogen or autoimmune disease is ruled out, the treatment algorithm first employs non steroidal anti inflammatory drugs such as Celebrex, dolobid (only available as generic Dolobid now) Naprosyn etc.
if that fails within six months to control the uveitis and to get to an off all steroids without inflammation situation, then one move on to DMARD drugs such as methotrexate or cellcept alone or in combination with Cyclosporine or Biological meds such as Remicade or humira.
I would ask DR Heston if inflammation is in the Vitreous since your child now sees
spots. a depressed sceral exam where the opthalmologist presses in on the white part of the eye adjacent to the iris to see the pars plana to look for exudates (sometimes called snowballs or snowbanks). if protein is in the vitreous it will cause what is known as Flare, a hazy appearance to the vitreous jelly.

Dr Heston Saw Linda Q's Son Michael while undergoing immunomodulation therapy along with the guidance of Dr C Stephen Foster in Boston/Cambridge USA at Harvard and MEEI ( http://www.uveitis.org )
He isn't an Ocular Immunologist but is a good Opathalmologist and I believe a retina Specialist.

I am also affiliated with the Online support group affiliated with DR Foster's Ocular Immunology and Uveitis Foundation and MERSI where he practices in Cambridge. I moderate the Learning about Ocular INflammatory Disease and the Specialists who treat it forum. I am also the Moderator for the http://www.parsplanitis.org forums also an online support group affilited with the OIUF in CAmbridge. I did training in 2004 along with Opthalmologists attending an American Academy of Opthalmology Continuing medical education course. I am NOT A DOCTOR, I am a person with a very long history of uveitis and pars planitis. I have been doing my online support and research since 1998.

your current opthalmologist can learn about all of this by going to the above sites where he can acces PROFESSIONAL abstracts and treatment algorithms for all Ocular Inflammatory Disease processes.
you can access them as well and can print them out along with informaton from the foundation.

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

Re: Our 9 year old daughter has iritis

Post by rtaunton »

Rachelle,

You are moving mountains girl! You will be getting your child on the right path very soon. As Mike mentioned, LoriQ is one of the moms over at the uosg.org site. If you post on the parents section she will see it and respond to you. She would be a good one to have in your corner.

I have a few friends (that I have met in the support group) that have hla-b27 - ping ponging uveitis. Both of them found the right med for their child, and one of them is in remission. I can't remember what med worked for one of them, but the other is on methotrexate and remicade, and is currently doing that as we speak.

You are doing a wonderful job, asking the right questions and following through!
Renee'
Renee'
Oregon
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