My son has Iritis: How can we help him? We're so stressed

My 11 year old son is battling with this disease for 2 years. He has been on the same medication for 2 years and we can't get rid of it. I am so stressed out and depressed by this. I am so afraid of my son losing his eye sit. Has anyone had iritis before and if you got it cured can you please share your information on how to get rid of it once and for all. Thank you. I need a miracle.

Hi @elizebeth, I can imagine that you and your family are very stressed and afraid for your son. As a parent, it is unbearable to see our children suffer and to accept that he may lose his eyesight.

@uvea10 and @bryan talked about uveitis and their children back when they were teenagers in this discussion:
- Uveitis in children https://connect.mayoclinic.org/discussion/uveitis-in-children/

I've tagged them here in the hopes that they will return to share with you how their children are doing 10 years later. @cahnny @chicagoprof @daisydo @dadcue may also have some thoughts and experiences to share as adults living with uveitis.

Elizabeth, have you requested an appointment for your son at Mayo Clinic, Jacksonville? Would you like more information on how to request an appointment?

Hi. First, I am sorry to hear of your depression and your son's diagnosis. You must feel scared with so many unknowns. I am 58 and was diagnosed with iritis/uveitis at age 12. Working with doctors to manage it, mostly with steroid drops, worked for some time, but I was eventually diagnosed with Glaucoma at around 20. However, a contributing factor was that I was treated with steroid pills to treat the underlying systemic condition, Juvenile Idiopathic Arthritis, which caused the iritis. This does not mean the same thing will happen to your son. I am not a doctor, but medical treatments have improved (I hope!) since I was a kid. I hope you can get to a good ophthalmologist for your son to help him manage and reduce the inflammation and pain. Wishing your whole family the best!

Terri, this is such a helpful and hopeful message for @elizebeth. I love how Connect helps connet people. Thank you.

Terri, how are you doing today?

I am doing well. I love my new prosthetic, which looks great, and still managing my left eye well for glaucoma. Fortunately, haven't had a uveitis flare in many years! Thanks!

Hello,
My daughter is doing well with her Uveitis. She has been receiving Remicade infusions for over 8 years which has kept her inflammation down to 0-1 cell per eye. She has her infusions every 8 Weeks and does have to take Methotrexate monthly in the pill form. I feel blessed that we had such great Ophthalmologists at Children's Mercy Hospital in Kansas City, Mo. Sadly I think she may have this disease the rest of her life but at least we found the medication that is keeping it under control.

Welcome back, @uvea10. I really appreciate your sharing with @elizebeth who is very concerned about her son (understandably).

How accepting is your daughter of her condition and taking medication long term? What are her hopes and dreams as she embarks on young adulthood?

@uvea10 & @elizabeth I’m so sorry to hear of others struggling with iritis. My first episode which resulted in steroid drops was in 2008 at the age of 31. For the next 9 years my flare ups increased in frequency and severity and I experienced them in both eyes. Pain. Light sensitivity. Redness. After too many rounds of steroid drops, I started developing cataracts so my eye doctor referred me to a rheumatologist. I saw specialists at UC Davis and UCSF in California who agreed that the best course of action was methotrexate to prevent my immune system from attacking my eyes. It made me so sick I only lasted a month. At that point I had seen 7 MDs and the acute recurring uveitis was starting to lessen my vision. At the time I worked for an employer who provided acupuncture as a benefit and I will forever be grateful. Within about 10 minutes of discussing my history with the acupuncturist she asked if I had ever been diagnosed with West Nile Virus. I had never been tested but I’m one of those people who mosquitoes just love. I requested a test through my MD and I had antibodies (indicating past infection). Thinking back I connected that when I had my first iritis issue I was recovering from over 10 mosquito bites. The acupuncturist explained that the virus likely caused my immune system to go haywire. She had a more eloquent way of explaining it. She then recommended two Chinese herbal supplements. One was to knock down the viral load in my system. When I finished that bottle of pills, I took a second one that was intended to rebuild my immune system. I took these over a number of weeks and they are only available through licensed providers in California. The iritis never came back and that was 6 years ago. If you are comfortable exploring acupuncture I highly recommend verifying the person’s license with your state and researching providers. I wish it hadn’t taken me 9 years to find my answer but I’m so grateful I did. I went into it with the attitude that “it can’t hurt to get more advice” and I didn’t expect it to be the amazing resource it was. I hope anyone reading this finds the help they need. Sending you healing wishes.

Hello, I'm wondering if you are still iritis free? My dear daughter (35) has struggled with iritis for about 2 years...it has been so discouraging. Mosquitos LOVE her, and so I passed your story along to her. Just checking back to see if you're still doing well.?
We live in CA too if you feel free to share the name of your acupuncturist.
Many Thanks,
Victoria

@victoriak
Hi Victoria. I'm so sorry to hear your daughter is struggling with iritis. I remember it being so discouraging. I'm happy to share that I am still iritis free. Every now and then, I feel the achiness in one of my eyes (usually when I'm washing my face and gently rubbing my eyes). I got more of the Chinese herbal supplement to have at the house and if I take one, the ache disappears. Every year when I see my eye doctor, he checks for inflammatory cells and there are none.

My acupuncturist is Amy Dawson in Chico, CA. We're about an hour and a half north of Sacramento. https://chicoacupuncture.com/home-page

Another great resource to help with the mosquitoes is a new repellent I found. It works better than Off Deep Woods! It's called Proven and I initially bought it at Target but have not seen it there again. I will repurchase for sure. https://provenrepellent.com/shop/12-hour-odorless-spray/

Sending healing to your daughter! I hope she finds a solution soon. Gina