I am new to this board with a 22 year old daughter who has been seeing Dr. Foster since 2005. She has Uveitis as well as JRA. She lost the vision in her left eye when she was 14 due to the steroid drops we had been administering to fight the inflammation in her eyes since she was 2 (she developed glaucoma and her optic nerve was destroyed). After finding Dr. Foster 4 years ago we felt that we were on the right track with saving her right eye. She has had a few surgeries to remove cataracts, Elshnig's Pearls among others and is on Humira and Cellcept. All seemed to be going well for the last year or so and then 3 weeks ago she woke up with it looking like someone turned a fog machine on. It seems that she has a major flare on her inflammation. I am here because I just don't know how to cope or help her cope with what she believes is "looming" around the corner (losing her vision completely). She is very depressed and angry which is very understandable. I just feel so helpless and so scared!
My husband is in a similar situation and we are very frustrated, too. He has birdshot, which is a rare form of uveitis, which was only in one eye. As of May, it went to the other eye.
We have had days when we are very angry and very depressed. But he always says at least he does not have cancer.
He is on similar meds as your daughter, but takes cellcept and cyclosporin instead of humira which make him very sick and very tired. And he has excruciating eye pain that we are trying to get to the bottom of, to no avail so far. We have been to see Dr. Foster three times this year and are going again in September.
There are a lot of wonderful people and a wealth of information on this site. So I guess from what I have read it's a natural process when going through something as devastating as this to grieve.
I am sure you have been in contact with Dr. Foster over this latest inflammation.
I truly wish you and your daughter the best and hope they can stop the inflammation ASAP.
Re: support
Thanks Deb. My daughter also has extreme eye pain, but it is in the eye that she lost the vision in. The shunt that had been put in when she was 14 is not fully functional so the pressure has skyrocketed in that eye causing her extreme pain. Since she has no vision in it, we are just looking at pain management at this point.
We live on the west coast, and had just been to see Dr. Foster in mid-July (everything was fine then) so we are seeing a specialist at UCLA who said he would contact Dr. Foster and make sure he was "on the same page". I hurt because she is 22 and has been trying to be strong and positive for so long that she just doesn't feel like she has anything left. She keeps saying she is "over it" which totally scares me.
Re: support
Sometimes we have to trust in the 'expert'and do whatever it he suggests with modification of meds to achieve control of this beast known as Uveitis. is your daughter able to get some psychological counseling or meds to get her stabil?
all of the stress that you have undergone might also benefit from some counseling etc too. I worry about our members when signs of depression from all of this crop up.
you have done all you can by getting her the VERY BEST CARE IN THE WORLD by seeing Dr Foster so please don't let the 'what if's' of this world bring you down. WE have to look forward in order to survive and often it is a much better place than we think when our vision is terrible and we can't stand to go outside because of aversion to light or pain in and around our eyes.
wishing both you and your daughter the very best,
Mike Bartolatz
Re: support
I have many times brought up the idea of counseling to my daughter and the benefits of being able to get out her anger, sadness, etc. It goes in one ear and out the other. I took her when she was 14 when she lost the vision in her one eye but now she is an adult and I cannot make her go (part of why I feel helpless). I definitely see depression rearing it's ugly head!
I confirmed with Dr. Foster that the doctor in California contacted him about her condition and plan of treatment and at least I know now that they are in agreement. This bad economy is hitting us and getting out to see Dr. Foster is difficult at this time (we were blessed 4 years ago to be able to afford to get out to Boston once a month).
She has an appt today but her vision has only become worse in the last week so I am sure he will be suggesting a surgical iridectomy.
Re: support
Is there any chance of seeing Albert Vitale in Salt Lake City? I don't know what he would do differently than CSF or your local doctor. AV is often suggested to members in the Southwestern states.
Dr Rao at Doheny is an option too.
I remember getting really upset and moody when my pars planitis was really acting up and they said I would be blind in six months to a year if they couldn't get my eyes quiet. MAJOR depression was the result. it took several stabs at various meds to get to something I could tolerate without major worsening resulting in a Manic depressive state.
I truly wish that someone could get to her and resolve this depressive state she is in.
Re: support
lapsmom, sorry to hear about your daughter's situation. I'd definitely stay in touch with Dr. Foster and perhaps he can advise your daughter's ophthalmologist on her plan of care.
You're in a tough situation! Hope things improve SOON.
It sounds like you are right on top of helping here, knowing that Dr. Foster is involved with this current treatment plan is good to know.
Does your daughter come online at all? To read?? Is there a group related to eye problems in your area for here? Maybe if she would go to a group they would encourage her to get further treatment if needed.
Does she have you go to appts with her? It helps so much to have someone to take notes and be a support. I know how serious it is when you think you are losing your vision, I know the depression and grief have caused very severe depressions for some people I know.
A counselor in our town has been fighting some serious eye problems and is setting up a group for people with eye problems, and she is thinking of setting up one for family members as well.
She is fortuante to have you and your support and guidance, and it sounds like it has been a blessing that you have taken her to Dr. Foster.
Re: New Member - Need Support
welcome to the group here.
Glad you are a part.
I't is a help to me to learn more about my illness, I have pars planitis. Back in 94 a doctor told me he didn't want to use any more steroids. He said " I can try cryotherapy but it might not help and you could lose your eye." That was exactly what he said . I didn't have any internet then.I didn't know anything. It sounded like he would rather jump into a swimming pool of Icewater. I didnt have it done. My right eye is in bad shape. If I knew what I know now I would have considered it.
I was 32 when I went big E blind . Then I learned to look at the edge of the blind spot. I became a full blown alcoholic. Passing out two or three times in a twenty four hour peroid. I have been sober 13 years now and I have a support group or groups all over the world. They dont know anything about uveitis though.
The right answers will come to you.
I know you are looking for them.
I saw a movie once where a mother told her daughter,"lets not worry until we have to" My wife watches a lot of lifetime. But I still try to tell myself that, Its simple but not easy.
pleas keep in touch
Frank
I assure you, you' re in the right place. People here are wonderful. You' ll always find someone with the right words. I can only imagine what all of this must have been difficult and tough for your daughter first, and for you. Dr. Foster is certainly the best. I wish your daughter and you the best of healt. Keep us posted!
re:Support
Dear lapsmom,
I can definitely identify with what you are going through in that I have a child who suffers from depression. His problem was chronic to severe asthma that greatly limited his life.
You might try getting her eye care professional to talk to her about getting help for her depression. With this disease (I too have uveitis) it is very common. And with hers starting so early I am sure that she has felt different from other people her age her whole life. My son is now 21 and he is on lexapro and elavil. It takes a lot of perseverence on my part when he is in a state of depression. You are doing the right thing in talking to her. Don't stop even if she appears to be letting it go in one ear and out the other. Some of it sticks.
I have had eye problems my whole life too. I was born with strobismus and even after two surgeries my left eye still turns in some. I was very self-concious growing up and even now when I am tired the crossing gets worse and I get down. Just keep stressing to her that she cannot make the right decisions for her eye care when she is depressed and making those decisions is extremly important to save her eye.
Try printing off some of these postings and give them to her to read or read them aloud to her.
Also I would suggest going to the parents site to read of some of the things they have had to deal with with their childrens uveitis. Good luck my heart breaks for you.
My condition follows your daughter's almost exactly. I was diagnosed with JRA and Uveitis when I was 2.5....my mom noticed one day that my eyes were dilated in broad daylight and was concerned. I'm 27 now and have dealt with glaucoma, cataract surgeries, macular adema, retina detachments and have been on literally every medication out there. I lost the vision in my right eye when I was 12 and a little over a year ago started to have very severe problems in my left eye. My eye was flaring and the macular edema was increasing significantly. My doctor here in St. Louis had never had any experience with a patient like me so I made the trip to see Dr. Foster. I spent a year on chlorambucil and had intravitreal Avastin and steroid injections throughout. I fortunately began to see some improvements and have since been stable....my vision is at 20/70 in my left eye now and that is pretty functional for me....minus everyday luxeries like driving.
I know exactly how your daughter feels. I get mad and upset often.....and more so because no one really understands what it is like....even parents. My mom and dad try very hard to help me on the emotional hardships of it but they will never understand. That's ok though....I've learned that you just have to play the hand you are dealt....if you don't, then you'll just wind up being miserable for the rest of your life.
There are a lot of great low vision aids out there to help with everyday things. I would be happy to talk to your daughter....I know when I first joined this group, I met someone who was in the exact situation I was in...similar age and we were both pushing through graduate school at the same time and it was so nice to talk to him and know that I wasn't the only one going through all of this. Please let me know if there is anything I can do.
Re: re:Support
Hi Lapsmom, I am 45 and legally blind, partly from uveitis, but mostly from secondary glaucoma complications and multifocal choroiditis.
I know how your daugther feels, and though what you're hearing sounds like she is at the end of her rope, she may be just vocalizing her worst fears and greatest frustrations to you because you are the only one she can really vocalize these things and not worry that you won't want to be her "friend" anymore.
I am not saying she is not clinically depressed, I just don't know, but I do know that it is my dad who drives me most of my specialist appointments, and it is my dad who listens to my fears about how that appointment may turn out, and my dad who has to hear about how well or badly that appointment turned out to be.
I know I can unload on him, and he hears every fear I have of getting sicker, and becoming blinder than I already am. Usually by the time I get home, I feel purged, and that feeling you get after you've cried allot, but I also know he will show up, about ten minutes too early, to take me to my next appointment.
There are not many people that will do that for you. My husband could not even do that for mem weighed down by his own depression and "why me?" complex.
I now know, that my parents are the ones that I can count on, and that my dad is the one that I can say things that I only entertain from time to time, but are not the truths that guide my life.
He knows this as well, I have been his daughter twice as long, and we have been through so much together. I've come to a place where I can tell him that I just need to vent, and he shouldn't feel like I want him to actually do anything but listen.
I am hoping this is what your daughter feels, but has either not realized it yet, or is just expecting you to know this since you two have been through so much together.
At her age, I was fiercly independant, and so it is a hard time to need your parents' love and support to help you feel like it is safe to go out on your own and not have to worry about failing because of an unavoidable health problem.
Meeting the man of her dreams also probably seems out of reach, and for many men, the possibility of his future wife going blind is more that they can handle. It can prove difficult, but not impossible, but at that age, even a bad haircut can seem like a huge obstacle when trying to meet men.
Your daughter may be putting on a mature and brave front, but trust me, deep down, she is still that little girl that you used to take care of, and part of her still wants to be taken care of.
The hard part for you, is how much to try and be there for her, and how far to let her go on her own. I would go by your instincts, and if she is really not feeling or acting like herself, try and have a heart to heart with her and tell you how much she is worrying you - that one always gets to me, and as soon as I know my parents are suffering because of me, I pull my act together to show them that they don't need to spend another second worring about little old me.
Good-luck with all this, and trust your maternal instincts!
Cathy
i know u wrote this a few weeks ago and i havent read all of the replies, just skimmed, but i wanted to say that the best thing u can is be strong and not show her how scared you are. i got JRA and uveitis when i was 5 and i think it was worse for me seeing my mom be upset about something wrong with me that i couldnt control. i felt like it was my fault my mom was upset but i couldnt do anything about it. i also think u shud get her on this site. i went thro some serious depression a little while ago when i was on the right track ands then i had scar tissue form on my eye and had to have surgery. i think talking to other people experiencing the same thing helps. im almost 19 so im about her age. if she wants someone to talk to who has some coping experience, shoot me an email. i think im allowed to post as long as i type it weird haha. alka (underscore) bhatt @ yahoo (dot) com
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