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New diagnosis

susan Message
19 Jun 2009, 01:40 PM

My 11 yr old son has just been diagnosed with this condition. As you will understand we are all a bit shocked and stressed. We have very little information at the moment and I would be grateful for any facts you could share with us. We don't know what to expect in the future, any experiences to share?
Bakersdoor Message
19 Jun 2009, 02:40 PM

Dear Susan. This condition is most unusual in a child. Typically it is people in their 50s although I do recall a child where they thought she had birdshot, but it was subsequently diagnosed as something else. What country are you in? Are you seeing a uveitis specialist as opposed to a general eye practitioner? My advice would be to make sure you are 100 percent happy with your doctor. I am sure Dagmar who is based in US will respond soon. She has a wealth of experience to share. Rea and I are in the UK and know our way around the health system here. Do get in touch with us directly if you feel we could help. birdshot @ live dot co dot UK. There is no need to panic. If you get the right treatment at the right time your child's sight should be maintained but you will need to be vigilant. Do get in touch directly if you feel we could help.
dagmara56 Message
19 Jun 2009, 03:22 PM

Susan; There are two important, critical actions you need to do right now: - calm down, you need your wits about you to make good decisions as well as set an example for your son. If he senses you are stressed and upset, it will make his own fear worse. - ensure your specialist has experience with treating birdshot. Contact me to discuss this, my email address is if you are in the US or Canada, we can arrange a phone call. The bad news is, any damage done to your son's eyes cannot be vastly repaired. In other words, there can be some improvement if there is inflammation, swelling, etc. but by and large, he is fighting to save the vision he has remaining. The good news, you and he will be amazed at how adaptable the mind is at overcoming any vision issues. Better news, there are many new drugs in the arsenal that can be used to attempt to get your son into remission. However, time is of the essence. You need to ensure he is on appropriate treatment. Since this is a rare condition, often retinologists are not sure or unwilling to treat. So it is critical to find a specialist with knowledge, and at least willing to take some risk to treat, and hopefully, some experience! I recommend you read the documents and posts on the main group site. I have as many sites as possible up to attract the attention of anyone with birdshot and then point them to the active group. The group is located at: The frequently asked questions which will help you get started understanding this condition is at: Please email me ASAP. again, my email address is Dagmar Anne