Aa
pars planitis
my 13yr old daughter was diag. with pars planitis 6 months ago. it took us 4 doctors before we found out what she had. she has vision loss already. she had injections done in her right eye and didnt help her vision at all. the doc. said the damage is done nothing he can do about it. so we had her left eye injected hoping she would get some vision back in that eye so far nothing. its really sad to see her struggle to see. is there anything else we can do for her. friends of ours was saying that maybe they can do transplants being she is so young.
Hi,
I know this thread is old now, but I just found it and wanted to comment to you. I have pars planitis and have had it for 30 years - diagnosed when I was 17. I have vision loss from the pars planitis. I also have the complicating issues of detached retina and CME (cystoid macular edema) in one eye, and glaucoma in the other eye caused by the steroid injections - all of which have caused vision loss for me. I would say go for the aggressive treatment and deal with the side effects, if you have them, because the disease will keep causing uncorrectable vision loss and you may have complicating problems even if you don't go aggressive (detached retina and CME, for me). I had a choice when it went into my other eye and I chose the injection (aggressive treatment) over just the drops, even though I was fully aware that I may get glaucoma. I was terrified my vision would get as bad in the second eye as it was in the first and wasn't going to take any chances. Well, it worked as far as treating the pars planitis, but then I got glaucoma, which was resistant to treatment. I had to have laser surgery, drops and pills, and I ended up with a fair amount of vision loss from the glaucoma too. I have been in "remission" for nearly 15 years now, but I'm still on eye drops for the glaucoma and have at least yearly appointments with a retinal specialist. I am told that if they can control it (effectively put the disease into remission), the longer you stay in remission the chances of it being reactivated continually lessen, especially as you get older, but there is no guarantee. I was also initially told it would eventually "burn out," but I'd always be considered to still have it and be monitored for relapse.
The best advice I can give you is to just accept that this is life. One person may lose an arm or leg, or have mental illness, or have diabetes, and this is what your daughter has to deal with - no one gets through life without some issue making it difficult. Do not treat her as an "invalid" because she will need strong coping skills, and need to just learn to adapt to her situation. Other people will just not accept or necessarily even believe that her vision is compromised, especially as she becomes an adult. If you make her out to be an invalid to 'prove' how poor her sight is, she will miss out on the things she is actually able to do/enjoy, which are still many, and those people won't believe it unless she has completely lost her sight and is using a cane anyway. In time she'll adapt - it will never be what the person who has run-of-the-mill farsighted or nearsightedness has, but almost every person has some type of "handicap" they have to deal with. The invisible ones are the hardest for others to accept. I have a coworker, who from the day I first told her about my eye problems, continually 'tests' me by bringing small print for me to read or making comments about things, such as if I say I can't strain my eyes for whatever she is requesting me to read for her, she'll blather on about how thick her glasses are (admittedly corrected to 20/20, by the way).
I had an extremely hard time reading for the first 10 or so years I had this, but I didn't give up and just did what I had to in order to read - lighting, magnifying glass, paper position. In fact, I didn't realize just how bad it actually was until I was finally able to get bifocals. I needed bifocals much sooner than the average person, but they wouldn't have helped in the beginning. I can't see far or near, but the need for bifocals is a lens issue, and as you've already discovered, there are no lenses that can help with this kind of vision loss. I also love to do close up work, and I had to give up or at least greatly reduce some hobbies, which was initially devastating. Now, when people ask me if I still do certain things, I tell them no because I have other interests, but later I remember it's because of my eyes that I'm not able to do it - I just don't dwell on it and actually 'forget'. That is the key, not dwelling on what you can't do, and appreciating what you can do and just getting on with your life because you can’t change this. But, this is a loss that has to be grieved in whatever way your daughter chooses to deal with it - give her time and encouragement in what she can still do. She may not actually grieve over her loss for many years, and then as an adult it may hit her.
I know this thread is old now, but I just found it and wanted to comment to you. I have pars planitis and have had it for 30 years - diagnosed when I was 17. I have vision loss from the pars planitis. I also have the complicating issues of detached retina and CME (cystoid macular edema) in one eye, and glaucoma in the other eye caused by the steroid injections - all of which have caused vision loss for me. I would say go for the aggressive treatment and deal with the side effects, if you have them, because the disease will keep causing uncorrectable vision loss and you may have complicating problems even if you don't go aggressive (detached retina and CME, for me). I had a choice when it went into my other eye and I chose the injection (aggressive treatment) over just the drops, even though I was fully aware that I may get glaucoma. I was terrified my vision would get as bad in the second eye as it was in the first and wasn't going to take any chances. Well, it worked as far as treating the pars planitis, but then I got glaucoma, which was resistant to treatment. I had to have laser surgery, drops and pills, and I ended up with a fair amount of vision loss from the glaucoma too. I have been in "remission" for nearly 15 years now, but I'm still on eye drops for the glaucoma and have at least yearly appointments with a retinal specialist. I am told that if they can control it (effectively put the disease into remission), the longer you stay in remission the chances of it being reactivated continually lessen, especially as you get older, but there is no guarantee. I was also initially told it would eventually "burn out," but I'd always be considered to still have it and be monitored for relapse.
The best advice I can give you is to just accept that this is life. One person may lose an arm or leg, or have mental illness, or have diabetes, and this is what your daughter has to deal with - no one gets through life without some issue making it difficult. Do not treat her as an "invalid" because she will need strong coping skills, and need to just learn to adapt to her situation. Other people will just not accept or necessarily even believe that her vision is compromised, especially as she becomes an adult. If you make her out to be an invalid to 'prove' how poor her sight is, she will miss out on the things she is actually able to do/enjoy, which are still many, and those people won't believe it unless she has completely lost her sight and is using a cane anyway. In time she'll adapt - it will never be what the person who has run-of-the-mill farsighted or nearsightedness has, but almost every person has some type of "handicap" they have to deal with. The invisible ones are the hardest for others to accept. I have a coworker, who from the day I first told her about my eye problems, continually 'tests' me by bringing small print for me to read or making comments about things, such as if I say I can't strain my eyes for whatever she is requesting me to read for her, she'll blather on about how thick her glasses are (admittedly corrected to 20/20, by the way).
I had an extremely hard time reading for the first 10 or so years I had this, but I didn't give up and just did what I had to in order to read - lighting, magnifying glass, paper position. In fact, I didn't realize just how bad it actually was until I was finally able to get bifocals. I needed bifocals much sooner than the average person, but they wouldn't have helped in the beginning. I can't see far or near, but the need for bifocals is a lens issue, and as you've already discovered, there are no lenses that can help with this kind of vision loss. I also love to do close up work, and I had to give up or at least greatly reduce some hobbies, which was initially devastating. Now, when people ask me if I still do certain things, I tell them no because I have other interests, but later I remember it's because of my eyes that I'm not able to do it - I just don't dwell on it and actually 'forget'. That is the key, not dwelling on what you can't do, and appreciating what you can do and just getting on with your life because you can’t change this. But, this is a loss that has to be grieved in whatever way your daughter chooses to deal with it - give her time and encouragement in what she can still do. She may not actually grieve over her loss for many years, and then as an adult it may hit her.
Yes, but there are very few...search at uveitis dot org (I spelled it out in case the web adresses are not permitted.
she has seen many of doctors. she seen 4 ophthalmolgist. none of them new what she had.so i took her to a retinal specialist he is the one who diag. her with pars planitis. is there any doctors out there that specialize just in this disease? just how bad she has it i would go any where so she could get the help she needed. if there is help for her.the injections did bring the inflamation down but didn't improve her sight. the doctor she is doctoring with dont want to do surgery alot to do with her age. im just beside myself hoping someone out there has answers for us
Wow! I had no idea! I have never heard of anything like this before. I guess that there are things to be learned everyday of our lives. I hope that you can get the proper help needed to help your daughter. How is she adjusting to the situation? If you ever need to just talk, I am here. I love talking to new people. Meeting new people. You never know who can enrich our lives. I love coming on here even if I just read the entries, I find comfort in that just knowing and learning about new medical issues that I've never heard of and probably never would hear of if it wasn't for this site. I love to read and this is one thing that my issues can't take from me even if I'm in pain typing to read. Well thank you for responding to my question and curiosity. I wish you and your family the best of luck in getting all the proper help you'll need for your daughter. Take care,we'll speak soon. Have a great and wonderful day!
MEDICAL PROFESSIONAL
By saying its much LESS than one in a million I meant it is MORE common. 25% of the cases of uveitis at NIH and 3-5% of uveitis cases at clinics is common. Overall incidence perhaps one in 50,000.
Link to good discussion paste in your browser
http://emedicine.medscape.com/article/1208794-overview
JCH MD
Link to good discussion paste in your browser
http://emedicine.medscape.com/article/1208794-overview
JCH MD
MEDICAL PROFESSIONAL
The incidence of pars planitis is much less than one in a million. In the practice of a retina MD it is relatively common. Use the search and archives feature to read about it and also go to www.emedicne.com and search pars planitis.
I would suggest that she be under the care of a retina Eye MD at a medical/university center.
Transplants do not help this some times intraocular implants of steroid are used.
JCH MD
I would suggest that she be under the care of a retina Eye MD at a medical/university center.
Transplants do not help this some times intraocular implants of steroid are used.
JCH MD
their really not sure. the doctor said 1 in a million person gets this disease. pars planitis is kinda like aging of the retina. her regular eye doctor said he never seen it like this before in his 40 yrs. he said normally you get it in one eye. in which my daughter has it bad in both her eyes. its just hard to see her loosing her sight and how she struggles to read. the only way she can read is her having it right in her face. you would think she would go cross eyed thats how she can read.
I'm so sorry to hear about your daughter. I really do hope that she can be helped to regain her vision back. How did this happen? What is pars planitis? I cannot give you any answers or advice just because I have no idea of what this is, but I will be praying for you and your family. Best of luck for your daughter.
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