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non-allergic vernal conjunctivitis

I have had SEVERE eye allegies my whole life. Cobblestoning, itchy, watery, mucus filled, light sensitive... I've had it all. Every morning I wake up with my eyes glued together from mucus.  No allergy medicine on the market (over the counter or perscription) has ever worked but steroids.  My recent allergy tests show that i have no allergies, so my allergist suggested that i do not in fact have allergies, i have non-allergic vernal conjunctivis. Only steriods have worked so far but obviosly I cannot continue for more than two weeks.  I am on ristasis (one month so far) and absolutely no improvement.  I am a 14 year old girl and suffering terribly (for my whole life)  Does anyone have an suggestions on what to do?  
5 Responses
233488 tn?1310693103
MEDICAL PROFESSIONAL
Yes see a ophthalmologist that specializes in cornea-external disease. Find one near you at www.aao.org    You should be able to be helped.

JCH MD
Avatar universal
My son suffers exactly as you do.  He is 7 years old and has had a miserable 3 years so far with no end in sight.  After trying tons of drops we are now also on restasis like you as well as chromolyn drops which I am not finding much help with.  He wakes up screaming and the morning routine is insane because he cannot see due to the severe light sensitivity. He often cannot get on the school bus and has missed so much school because of this.  I am SO happy to find someone else with this condition as I have searched and searched and found no one!  I am trying to find another doctor to see and I am willing to travel if I have to because my 3 doctors I have seen during the 3 years have nothing else to offer me, meanwhile my son cannot function day to day with this.  I am desperate to find help!  maybe we can provide one another ideas or thoughts....or even support :)  
233488 tn?1310693103
MEDICAL PROFESSIONAL
Be sure that you have discussed with your ophthalmologists the use of cromolyn sodium eye drops or off label use of restasis.

JCH MD
Avatar universal
I am in desperate need of help in locating a doctor in the US (preferably NY metro are that specializes in this condition.  Nothing is helping my son..I have need to many doctors and have been in the care of a pediatric ophthalmologist that tells me we are doing all we can do.  it is not good enough.  My 7 year old can still not function and is missing many days of school due to his light sensitivity and blurry vision with burning.  Someone somewhere must know more about options we have to treat this.  I would appreciate any help anyone can offer!
233488 tn?1310693103
MEDICAL PROFESSIONAL
You need to find an ophthalmologist(s) that you can get to regularly. In NY the Manhattan Eye and Ear Hospital is excellent http://www.lenoxhillhospital.org/departments.aspx?id=308

Wilmer Eye Institute at Johns Hopkins is world famous as is Massachusetts Eye and Ear Hospital (Harvard faculty)

JCH MD
2 Comments
I have been dealing with this with my son for 4 years. I live in rural Missouri. Our local eye doctors have provided no helpful treatments. I am looking to the St. Louis area... do you recommend a Dr. in that area? or surrounding area... Memphis, Little Rock, Springfield MO...
If your son is 4 years old he will need to see a pediatric ophthalmologist. There are excellent pediatric ophthalmologists at Department of Ophthalmology at Washington University School of Medicine and St. Louis University School of Medicine and St. Louis Children's Hospital.  
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