update daughter aged 11

[shine78]

where do I start my daughter's eyes hasn't got better or worse but her optic nerve as fluid around it . I'm feeling confused on what's going to happen next been told they want to inject in her eye but scared about side affects and if she should have it as she's said she doesn't want it doing. can anyone help me please I really need some support and don't know where to turn too .x

[Becca2]

Hi, I wanted to write to you know because I know what it is like to feel terrified about your child's health and just don't know what to do. My son has bilaterial uveitis and as has retinal vasculitis. He has lost some sight (field of vision and some visual acuity he see 6/24). I don't know the exact problems or any of your daughter back story. My son doesn't have Behcets but was tested. I guess I am just trying to make connections. I assume you are talking about with a steriod injection. i have found both Olivias Vision and uveitis.org very helpful information. Lots of information about different forms of treatment etc. Please let me know how you get on. My son is currently taking methotrexate but we are not entirely sure it is working. All the best, Becca

[shine78 in reply to Becca2]

My daughter takes methotrexate as well as infliximab infusion its her optic nerve that's swollen and there's fluid building up she as inflammation at the back of the eye too the inflammation as gone down but keeps going back up . I will have a look at web site thanks very much. All my best to you and your son Zoe xx

[Becca2 in reply to shine78]

Sounds like she getting the right treatment. We are in process of weighing up / possibly trying to apply for funding for HUMIRA. My son's uveitis have been classed as ideopathic. We are thankful, that while he has had inflammation at the back of the eye, that (touch wood) has resolved but he continues to have inflammatiom at the front of the eye. My son is 7. On the OV website there is another type of injection anti-veg (?) - might be worth checking it out. I really don't know... But think there is less risk of other long term problems such as cataracts and glaucoma which your get from the steroids.

All the best to you too,

Becca

[lilaraquel]

Hi both, I'm sorry to hear that your children are struggling and I hope that they respond to treatment soon/get funding for Humira soon. I wasn't sure if you were aware that there is a Young Sufferer's Weekend Away happening in April (24th to 26th)? It's at Tamworth Lakes Activity Centre and they have the Teapot Trust attending, along with other professionals, and it also gives them the opportunity to meet other people their age and have some fun! It also gives you the chance to speak to other parents in person as it can be very isolating having a child with a chronic illness. Details and registration can be found here:

eventbrite.co.uk/e/behcets-...

[AmandaMoseley]

Just to confirm that it is not too late to book for the weekend - we are stretching it for a few more days!

Amanda