Dr. in St Louis - Levent Akduman, MD

[rightaway]

I made an appointment with Dr. Levent Akduman as he was listed on the suggested doctors list for St. Louis. My son was diagnosed by an optometrist and I wanted to get it confirmed that he truly has iritis. I suspect he is correct as it was only gone for a mere 5 days after quitting the steroid and it seems to be back almost full force again. The funny thing is that he really does not complain of pain only occasional light sensitivity and very little notice that he calls a headache above his eye when in bright light. I notice it more than him most times as I can see that outdoor lighting and fluorescent lighting makes the redness intensify so I can see it affects the eye. It is in one eye only. He has no loss of vision it just looks funny in his eye as it is a noticeable different type of red eye. If any parent can tell me if they have a story such as my sons, any knowledge or any advice for the doctor appointment.

He is IGA deficient, has Von Willebrands and Leidens factor V. No one in the family has any history of rheumatoid arthritis or lupus or anything else. He has had significant joint pain that the doctors have called growing pains, never redness or swelling just pain that wakes him at night for many, many years.

I have no history of pink eye, nor my husband. I had iritis from an injury (bungee cord blow to the eye can do that). Honestly, if anyone has tips my appointment is 11/21/11 with him and I like to have my questions written down so I know what to ask.

P.S. thanks for being so helpful, Mike.

[Mike Bartolatz]

I would suspect that your child MIGHT have uveitis not in the iris but in the region just behind the iris called the pars plana causing exudate to appear. it is difficult to examin this part of the eye and because the light is so very bright to allow the doctor to see this region, it HURTs and the eye will tear a lot.
this is called pars planitis also known as intermediate uveitis. I developed this as well as posterior uveitis many years ago. eyedrops will not reach this part of the eye but oral steroids and injection of steroid to tissue surrounding the eye will. then a corticosteroid sparing approach to treatment is required to keep the immune system from attacking the eye. it is good that you are seeing an expert. I don't know about this specialist however so please give us feedback. there is another specialist in St Louis at Washington University, DR Rao if this doesn't work out.

I also urge you to join the parent's support group at http://www.uosg.org you will get feedback from parents about their experiences. we also have a couple of doctors to respond too. one is a DMD who's daughter developed iritis at a young age. another is a professor at Tulane who teaches about the disabilities act and she can help with School stuff. she developed uveitis herself and was diagnosed with sarcoidosis and is in remission but on Humira if I recall correctly.
I help at the UOSG forums too for the Ocular Immunology and Uveitis foundation in Cambridge, MA USA. I am the adminstrator for the http://www.parsplanitis.org forums for the Foundation.

Wishing your son quiet eyes,
Mike

[rightaway]

Thanks for the information. I will let you know what we think and what he is diagnosed with when we get back. I do have to say that this has been a blessing to just gather information. Thanks for your time. Wish us luck!

[Mike Bartolatz]

not a problem and I do hope that this can be quickly quieted down.

Joseph Tauber MD is also in your area in Kansas City if I recall correctly. He trained under Dr Foster At Harvard the best ocular immunologist in the World.

Take care and please let us know how this goes,
Mike

[rightaway]

So we had our appt today. Dr Adkumen said the iritis was a secondary problem that the cornea had inflammation and other issues he had a cornea specialist see him today. The cornea specialist said that his iris was inflamed along with the blood vessels in the eye and the cornea is indicative of an auto immune disorder. He said that this cornea problem was causing the others and that this is extremely rare in kids even more so than iritis. He put him on a strong pred drop 6 x day and an anti viral to rule out viral infections. We go back in a week and meanwhile he is working on finding an appropriate rheumatologist for max. No name was provided at this point. How I could forget to ask who knows. Not sure if anyone else has cornea problems as the primary diagnosis. Any info would be great.

[Mike Bartolatz]

I am sorry but I don't know what the primary autoimmune disorder would be causing cornea inflammation. I'm aware of things that can cause cornea inflammation as well as iritis and most are related to either pathogens or as a result of keratoconjunctivitis SICCA. I am ignorant of what could cause this stuff in kids. the factors you note may play a role so do a google search of PUBMED on the VW factor and corneal inflammation and uveitis to see what comes up. Ill get back to you.

take care,
Mike

[Mike Bartolatz]

I'm not sure what to say. do any autoimmune conditions occur in your immediate family. Irritable bowel Disease such as Crohn's disease?
does anyone have sarcoidosis or Systemic Lupus Erythematosus? or other condition related to connective tissue disease or bleeding disorders/vascular diseases?

take care,
mike

[rightaway]

No one has anything, Max has a bleeding disorder, Von Willebrands Type 1. I thought this was nuts, the doctor was very concerned and felt that we would definately get answers from the rheumatologist. When Max had the outbreak first off he had a humongous sore in his mouth that was really bothering him. He carries the main gene for Celiac disease, which he does not have but did eat a VERY strict gluten free diet for 6 years as he was diagnosed with Aspbergers at age 3yr. He improved so rapidly on the diet he no longer was qualifying for the services so we remained on this diet out of pure desperation and my other child was allergic to wheat anyway. We have 4 kids all are relatively healthy, Max besides all his quirky things is healthy and actually kinda chubby these days, he used to be emaciated. I am going to research everything you suggested and then I will get lots more details next Monday. It was really a long 3.5 hour appointment today and Max was totally spent. We will all be fresher on Monday, but I have to say without this forum I would have been totally unprepared for what anything meant, I felt blessed by the knowledge that you had all provided. thanks so much.

[rightaway]

No one has anything, Max has a bleeding disorder, Von Willebrands Type 1. I thought this was nuts, the doctor was very concerned and felt that we would definately get answers from the rheumatologist. When Max had the outbreak first off he had a humongous sore in his mouth that was really bothering him. He carries the main gene for Celiac disease, which he does not have but did eat a VERY strict gluten free diet for 6 years as he was diagnosed with Aspbergers at age 3yr. He improved so rapidly on the diet he no longer was qualifying for the services so we remained on this diet out of pure desperation and my other child was allergic to wheat anyway. We have 4 kids all are relatively healthy, Max besides all his quirky things is healthy and actually kinda chubby these days, he used to be emaciated. I am going to research everything you suggested and then I will get lots more details next Monday. It was really a long 3.5 hour appointment today and Max was totally spent. We will all be fresher on Monday, but I have to say without this forum I would have been totally unprepared for what anything meant, I felt blessed by the knowledge that you had all provided. thanks so much. The doctor today mentioned vasculitis several times, max had been diagnosed once in the e.r. with it as he had a bajillion broken blood vessels all over his bottom and legs, later we figured out it was from swinging on a black strap swing at the park.

[Mike Bartolatz]

I do hope that a treatment can be tailored for your son. many things that have a vascular component are directly linked to uveitis as it is the uveal tract which nourishes the eye. Pars planitis is thought by some specialists to be a vascular disease because of the exudative process that is present. the exudate is similar in composition to that of various types of vasculitic rashes found in things like sarcoidosis, crohn's disease, wegener's granulomatosus, Systemic Lupus Erythematosus, systemic Sclerosis etc.
is your son's uveitis granulomatus in nature? does he have any joint pain whatsoever?

[rightaway]

He has had years of knee pains orthO always says it is growing pains he has had MRI of legs hips nothing found at age 5 they did blood work they said he had no inflammation not sure all they ran. They always said no swelling no redraw no problem as we watched our son cry in his sleep even. I don't know about the granultoma you speak of we don't know what word he was using to describe the cornea. They called us with appt for rheumatologist we go dec 15 they are definately checking on it so I think this is good for now we praying it is a viral based infection, best case scenario!

[Mike Bartolatz]

the parent's forum at http://www.uosg.org has members from your area that you can interact with. some go to Washington University to see Dr Rao for their Kids uveitis treatment. you might be able to hook up with one of them for a cup of coffee etc. I recall the first time I met someone face to face with uveitis and it was pretty emotional. a Hug from another parent migh help you a great deal.
I am going on Vacation for the next few weeks but I'll try to go to an internet Cafe to check on you.

E Hugs,
Mike

[Mike Bartolatz]

Granulomas are pus like. how they appear can often present possible diangosed illnesses or pathogen's.

take care,
mike

[rightaway]

I am going to find out on monday if has any granulomas, thanks for the info. I know that it was something in there but both my husband and I do not think he used the word granuloma. I know he had a white milky haze on the bottom of his cornea that appeared after steroid use the first time.

Please enjoy your holiday! we are going to stuff ourselves with Turkey, put in drops and act like none of this was said to us and then luckily we get to check the progress on Monday. His eye is totally free of the red ring around his iris in just one day.

Again, thanks and I guess I thought I was on the parent forum. I will post on there I am new to this whole posting thing.

Happy Thanksgiving,
Dina & Max

[Mike Bartolatz]

the link I provided is for another site affiliated with the Ocular Immunology and Uveitis Foundation in Cambridge, MA USA
http://www.uosg.org

take care and I would like to extend my best wishes for Thanksgiving to you and your family as well,
Mike