Parents and Kids: Introduce Yourself Here
This is an archive file (no exchange) in which we invite parents to enter a brief note telling us a little about yourself and your family or child's situation.
To enter your information, click on REPLY. A window will open. Type your name or online "handle" in the SUBJECT line, and in the COMMENT section (this box), type the information your would like others to know.
If you would like to ad a picture, send it to the Webmaster and we will load it for you.
Meghan will be five in January- She was diagnosed with JRA and uveitis shortly after her 3rd birthday- So far her vision is unaffected (Thankfully)- She is still on the predforte and currently the cyclogyl- She is taking Imuran 50mg a day now- after no success with the MTX and Cellcept- We visited Dr Foster this past summer and he is happy with her treatment to date.. We are in NY and see Dr Yang and Dr Gottlieb(rheumy). This site has been extremely helpful for support and information. Thanks all
Linda
Lori, Mike's mom
How about we add our names and at the end make a list. This would be helpful to an 'old timer' like me. Actually my 13 year old referred to me as 'over the hill' and that I should 'pimp up' the minivan with some sort of lights and a stereo. Needless to say, he now has to do tons of chores if he wants a ride to junior high
Lori mom of Mike (17 years old), idiopathic pan uveitis, patient of Dr. Foster since 2002 - being treated with methotrexate
Michelle, mom of Sophie
I was just wondering if there was anyway to have a list of parents' names and their children who are dealing with jra/uveitis. I often feel bad because I get names and situations confused and I am so very grateful to all of you who respond and post. I feel as though I know you all (although I haven't been posting very long) and I would like to extend the support and encouragement that you all have given to me!! Just a thought, let me know if there is something that I am not aware of, thank you and may you have a safe and happy Thanksgiving!!!
I'm the mom of Michelle, diagnosed with bilateral anterior Uveitis Aug. 2001 and diagnosed with pauci JRA in Sept. 2005. I also go on the parents page on the arthritis site and I know you post there as well.
Good luck with everything.
Sue
3girlsmom39
michelled
Unregistered User
(11/29/05 8:35 am)
Sophia
Mom and Dad of Sophia: Michelle and Stephen
Brother and Sisters: Michael 6, Maria 4, Sophia 3 and
and Gabriella 11 months.
Diagnosed: Sophia was diagnosed with pauci/jra in July of 2004; she started having symptoms at 18 months. She was diagnosed with uveitis in Jan. 2005.
Meds. Sophia is currently on pred forte, naprosyn, folic acid, MTX and remicade.
Megan is 11, and will be 12 in Feb. She got sick two days before her 9th birthday, and was diagnosed with uveitis two weeks later. She has subsequently gotten a diagnosis of 'possible Behcet's' disease. In addition, she has osteoporosis and gets three-day infusion treatments for this every four months.
Currently she is on Celebrex, as she did not tolerate MTX after almost two years on it. At this time her eyes are clear, and we keep our fingers crossed and pray very hard...
We live in Bucks County, Pa, just outside of Philadelphia. Most of Meghan's docs are at Dupont hospital, in Delaware, but our local opthal is at CHOP. We used to see Dr. Foster on a regular basis, until Meghan's eyes became stable.
Glad to meet you!!!
MAryAnne
Edited by: Webmaster at: 11/30/05 10:08 am
Jimmy
Jimmy is 14 years old. He was diagnosed with uveitis in September 2003. He is currently on mtx(25mg), prednisone(7.5mg), pred forte and cosopt.
He has had two surgeries for uveitic glaucoma. He has synichiae in the left eye.
We recently had genetic testing confirming that his uveitis is from Blau syndrome. both his father and cousin had it with smaller consequences. Blau syndrome is on the same genetic card as Crohn's disease, both of which are inflammatory diseases.
He's into soccer and clarinet.
I'm his mom, Pat. My husband is Dick and he has an older sister, Katie. We live in Shoreview, MN, and he is treated by Dr. Herman at Mayo Clinic.
Re: Parents and Kids: Introduce Yourself Here
Hannah,9 1/2, was diagnosed w/pauciJRA and uveitis exactly 6 yrs ago.(hard to believe!)She's only had her one initial arthritis flare at that time and it was "cured" with a cortisone shot.But the uveitis has been ongoing,with eyedrops,mtx and now Cellcept.She's doing well and she sees eye doc every 4wks in Abq.NM .We did see Dr.Foster in Aug.and Cellcept was his idea.Her docs here hadn't used it. Her left eye was discovered to be 20/400 when she was diagnosed so also wears glasses and has perfect corrected vision. Brian and I have a son also,Spencer,who's 7.Good luck and God Bless to all! -Sandy
Jen, Andrew's mom
Andrew (12 years old) was diagnosed with uveitis in his left eye November of 2005.
He is blind in his right eye due to an injury around 4 years ago.
Started on 40 mg prednisone, and pred forte drops 3 times daily.
We live in Utah
Andrews family
Dad~ Chris,
Mom~ Jen
Sister~ Emily (10 years old)
Sister~ Naomi ( 9 years old)
My son sam is 8 yrs old. Diagnosed with uveitis (pars planitis)in 2002.
suffered retinal detachment and had numerous surgical interventions. Now blind in the left eye due to various retinal problems.(FIXED TWICE NOW PARTIALLY DETACHED AGAIN.)
Had steroid injections vitrectomy, lens replacement catarat removal, laser surgery, cryo currently on prednisolone oral steroid and drops.
RE: Parents and Kids: Introduce Yourself Here
Hello to all!
I'm Monique, mom of Brandon age 13. He was diagnosed with Pars Planitis in May 02 at age 9 (almost 10). He is currently on 15mg MTX/week and all clear since October. IOP continues to be an issue, but it is closely monitored. We love our opthmalogist, Dr. Paul Finley!
I am Nia's mom and we live in Maryland. Nia is four and was originally diagnosed when she was two. She has bilateral pan uveitis which is under control for the most part and bilateral cataracts. I look forward to meeting you all and sharing support over the years.
Macturtle
Unregistered User
(1/30/06 1:44 am)
New to this sight from Canada
Hello,
My name is Lisa, I am the mother of Mack (10yrs) who was diagnosed with Pars Planitis 2 yrs ago. He is currently on Methotrexate SC with minimal improvment.
Mack has a 15 yr old sister Caitlin, and a 12 year old brother Ben. My husbands name is Tracy.
We are from British Columbia, Canada.
tinaptacek
Unregistered User
(2/10/06 8:33 pm)
Pars Planitis
This is wonerful! I am 32yrs old, I was Diagnosed with what was called old burned out pars planitis now just"pars planitis" when I just turned 4 years old(youngest person ever diagnosed), that was back in 1978 when there wasn't alot of information known about the disease. I am writing this to let every parent here know that there child is going to be just Fine! My vision is good. Some days 20/20 other days not so. I still have doctors scratch there heads every now and then do to on and off again "burn outs". But my vission always comes back to 20/20. Be thankful for the recources they have avalible today. I remember like it was yesterday sitting in that big chair listening to the doctor tell my mother "show her all the buetiful things in the world you can think of. Your daughter is going blind!" Im here to let Everyone know this disease has not slowed me down one bit, and to give hope to any parent or patient that deals with this tricky little eye critter as I like to call it. If by chance my old doc happens to see this little miss Steinman is just Fine.
Re: Parents and Kids: Introduce Yourself Here
hello,
I am new to the boards. Our daughter Grace was just diagnoised with Uveitis. She has had Poly/JRA since she was 20months old. She will be 4 this April. Through her needles of MTX and so many medications she has taught so many people how brave a child can really be. I dream about her as a happy healthy adult and her only meomory of all this is her father & I telling her stories about it. She has faced allot of different hurdles and yet she thinks all the Dr. appointments are like going to Toy R Us or a party. She just smiles and laughs and for now I will take that and hold her tight. I am so happy I found this site and hope to learn from all of you. Hugs to our children.
Victoria
Upper Moreland
Documents and Settings\lztr\My Documents\grace.jpg" style="border:0;"/>
Arrwyn
Unregistered User
(3/16/06 2:21 pm)
greetings
My daughter's name is Ashley, she is 17 1/2 years old and in January she was diagnosed with Wegener's granulomitosis. So far it has eaten her septum and she has a very severely deformed face now called "saddle nose" as the "Bridge" of her nose below the bone is completely gone. However ... the Wg is now affecting her eyes and she has developed autoimmune uveitis.
I don't mind telling you all I am so scared of loosing my girl. She's a fighter, though. She does everything the doctor tells her and then some. The only problem we're having is the weight gain because of the steroids. She's on ingested Prednasome, prednasone drops for her eyes, Cytoxin and Bactrin for the Wg.
mmf
Unregistered User
(3/27/06 1:14 am)
daughter with uveitis
I didn't realize there were so many children with this disease. My daughter first developed nystagmus and then a year later uveitis. She has had it since june 04. She has been on prednisone and methotrexate. She did develop macular edema also. When we tried to wean the prednisone the macular edema came back. Besides that her eyes have been quiet. We have been slowly weaning her prednisone (which I'm afraid to do- her vision is 20/100 and 20/60 corrected). When I am reading about everyones children it seems so discouraging. I feel like this is never going to end. Does this disease ever just end for anyone? I am also upset because the last month my daughter has been getting nauseated and vomiting every time she takes methotrexate (she never got sick before this while taking it). I feel like she will never get off prednisone she has almost been on it two years. I don't know what to do anymore. I am so frustrated. Thanks for listening
matthews mom
Unregistered User
(4/7/06 2:20 pm)
Matthew
Our son Matthew, age 7, was just diagnosed with pars planitis in March. We would love to talk with you - we're searching for doctors right now.
patriciaiglesias
Unregistered User
(4/11/06 8:13 pm)
hi!
I live in El Paso, TX and haven't heard about cell cept until now. I hardly speak english (i speak spanish). My daughter Mariana got JRA (pauci)when she was 18 months, and uveitis in left eye at age 3. Her joints are normal now, but she have a lot of problems with her eye. She used prednisone, indocin, vioxx, etc, but now she takes mtx and prednisolone(eye drops). I'm very happy that this group exists, and i hope i continue learning from your experiences. Thank you
Documents and Settings\lztr\My Documents\grace.jpg" style="border:0;"/>
Topic Commands
Click to receive email notification of replies 
Click to stop receiving email notification of replies