My name is Chris and I live in Alaska, about 50 miles north of Anchorage. I have had chronic uveitis for over 40 years...a story I will tell some day.
I have JUST found you all...as I have visited the Casey eye Institute, being a westcoaster!
I am learning my way around this place but could not get the introductions section to give me a text box. I am a MAC user and wonder if that causes problesm for this board?
I will just lurk awhile as I learn my way around. Thanks to the hosts of this support board!
Being a westcoaster myself I wanted to welcome you. I am not the one with uveitis, my 11 year old daughter is. You've battled with this for 40 years? Yuck! Our battle started in 2002, and I thought that was long enough!
It has been almost 3 years since I've taken my daughter to Casey's. Who is your Dr. there? Is it Dr. Suhler?
I've been to Anchorage. It is beautiful there, but the airport location takes the cake. I have in laws that live in Kodiak, and I have to admit that Alaska is one of the most beautiful states that I have seen. You're very blessed to be surrounded by all of that beauty.
I'm just rambling. I'm glad you're here. The area to post your introduction should work just like it does in here, except that there are no replies there.
Renee' (oh I'm from the Oregon coast)
Edited by: Renee36 at: 3/9/07 10:15 pm
I saw James Rosenbaum when at the Casey Eye Institute. And I met Justine Smith. Very nice folks. Dr. Rosenbaum could not believe I had MD...LOL! I am a conundrum for the experts. I know I caused lots of consternation for my recently retired Dr. Harrison up here. He is the second doc I have retired! I am in great hands amazingly sow for how far away Alaska is from civilization.
Re: Introduction
I have two nephews that live in Wasilla! Same age as your boys! How funny is that. It is their spring break right now, right? My daughter went to Dr. Rosenbaum at one time. I'm sorry to read of all of your struggles through the years, but am very inspired how you overcame them.
Hla-B27 can run in families, and so can autoimmune diseases. I hope your son can get on immunotherapy soon if he isn't already. There is a kids page on here, too, if he would like to join. My daughter writes in there on occasion when she isn't busy doing home work or running around.
I don't know if Bellevue Washington would be easier for you to get to, but there is a a Dr. Corey there that prescribes immunotherapy as well.
Re: Introduction
Renee~
What do you mean by immunolgy therapy? Are you talking about Cyclosporin, methotrexate or other related drugs to suppress the immune system?
In the earlier years of my walk, I did not have those therapies available. About 10 years ago I started with meth, then moved to cyclosporine for a long time. Now I am playing with another drug as my liver functions are driving my internal med and theumatologigist nuts.
My son is on meth and is doing relatively well and the injections are not as frequent as I have had them. The two strategies togeth
er seem to work for us.
Yes, it is amazing what research has learned over the past 40 years. Current thinking as I understand it is that we have a genetic anomoly that is sensitive to a virus of some kind that triggered the immune system response. Puberty might have been a trigger too. (We both woke up with pan-uveitis right after our 12th birthdays). In any case, it looks like we can hope his case will burn out, but I am going to my grave with this stuff. Godd thing I did not wait around to do stuff until this cleared up!
If I had known then what I know now, I probably would not have had children. This is disease is not what i would wish on my worst enemy, let along one of my sons. But now that it has happened, I hope I am a strong role model for him to take it all in stride. He goes to Japan with his third year language class this June. He is an Life Boy Scout and a typical teen in all respects. He is just recovering from an operation to remove scar tissue that bridged the pupil. We are to get a contact for that eye soon. Darn stuff grew INTO his lens and so it had to be removed. No replacement lens for active disease patients. Oh well. I have told him about the support chat groups and he may pop in the kids group.
What school do your nephews attend? My son goes to Wasilla high.
Have you found an easy way to 'educate' schools about your child's uveitis? I get so exhausted having to retrain a new batch of teachers each year AND deal with all the missed assignments dues to dr. apts. I get so angry that they don't cut him some slack, but then, with schools being overcrowded, they can force some families out to home schooling I guess. My son has no desire to home school. i cannot blame him but I have bit the arse of more than a few teachers/admins in my day. Geeze. Life is difficult enough some days with this disease. I don't need school crap on top of it. Any suggestions would be appreciated. I feel like I am tilting at windmills some days. I have insisted that only one counselor follow my son through his four years of high school so that I have cut down on having to retrain most admins. She happens to know us from church as well, so it is a win/win for us. Still, I smack up hard against 'set in their ways...follow the rules to the letter of the law' kinds of teachers and they have NO compassion AT ALL. Now that I don't drive, I have to pay cab fares for my son to make up work after school. That is a $20 ride one way. Gets kind of expensive if he is having a flare.
Anyway, I am rambling again. Most days are very good and I take it in stride. Some days, the logistics drag me down.
school info
Yes Chris, this link will help with school info, and you can even print out a guide to give to the principal, teachers and counselors p083.ezboard.com/Accessin...1113.topic
We have help on the board from Sharon who can walk you through the process of getting your son on a 504, or IEP. You have rights, but you do have to fight for them with setting up meetings so that you can help to educate them. Just start another post with her name in the heading (Help Sharon)
Your families case sounds very complicated. It is autoimmune in nature. My daughters vision went wonky after a case of antibiotic resistant strep throat. I have a pretty large family history of strep throat turning into rheumatic fever and other illnesses.
I'm concerned that your son is not quiet yet so he can get a lens implant. You are right, what I mean by immunotherapy is talking the different meds that can work in quieting uveitis. This link talks about the majority that is being used p083.ezboard.com/Literatu...=818.topic
My daughter started with methotrexate, then cyclosporine, and it never worked. There is Cellcept, Imuran, chlorambucil (not sure if that is an option at his age) and biologics. My daughter gets infusions every month.
I can't even imagine the challenge of being in Alaska for receiving medical care. I know what the cost is to fly to the lower 48. I wish you could hop a plane with us and fly to Boston for an evaluation with Dr. Foster.
I do believe my nephews go to the same school, but I could be wrong. Their names are Jake and Mac Taunton. Jake is down here now visiting with his Dad. He lives with his mom and step dad in Wasilla during the school year, and fishes with his Dad in Alaska during the summer. I get to see the boys only a few times a year. My son and Jake used to fish and hang out here, so when I saw him reaching 6'2'', and still growing, it made me realize just how fast time goes.
Hugs,
Renee'
Edited by: Renee36 at: 3/12/07 9:43 am
Thanks for the links! All info welcome! I am a strong believer in being your own best advocate.
Daniel has a 504 for his ADD right now. I think I might need to tweek it more to get time accommodations for assignments.
As for his treatments, we are remarkably well cared for. His uveitis is getting better treatment than I did at his age. By this age, I had 8 surgeries under my belt...an appendectomy to boot!
Alaska seems remote until I read the stories on this site. I know realize that my advocacy and knowledge has helped us to get excellent care. That does not mean things are static. They are not and as Daniel's biology changes during puberty and adulthood, he is going to have to be a self advocate for his care. You are right, his disease is not quiet...mine has not been without pregnancy or steroids for 40 years...immune suppressants have been marginally successful in making injections less frequent. We are working on that.
All the info I get allows me to be a better self advocate for my needs and my son's needs. Thanks for that. There is so much info on this site...it may have taken me months to find it all (Slow reader now that my sight is impaired).
Thanks again for the guides! I am looking forward to reading them! Knowledge is power!
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