lele1016 Profile

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12/16/08

Hi,
I just read your response to my posting and although it makes me sick to my stomach to hear about another child suffering from this horrible disease, I was very happy to hear from someone else who is going through a similar thing. Thank god for Dr. Foster and this web site, it has been a great resource to me. We first learned of this uveitis thing in mid Nov. when my daughter's eyes became red, swollen and painful out of the blue one day. Now, mid Dec, 30mg prednisone daily, 10mg MTX weekly, predforte eyes drops every 3 hours and cyclogyl drops every night. The whole thing makes me want to vomit! How could a healthy 5 year old be fine one day and weeks later be on all these medications???? The comment you made about your daughter completely changing while on the steroids really hit home. My daughter has responded the same. My usually bubbly, happy go lucky little girl has become a child that I don't even recognize. Always looking sad, crying at the drop of a hat and difficult to deal with at times. We also have the physical changes as well. She is constantly complaining about being hungry and despite our efforts at offering healthy food choices she has definitely gained some weight. The kicker for me still is how random this is. She has never had any other health problems. They say the most likely cause is JRA but she has never had any symptoms. So frustrating!!! Does your daughter have a definitive cause for her uveitis? How long on the methotrexate before you added remicade? You said you finally got your daughter back, when did that happen? Obviously, I have a million questions and would love to pick your brain about all this. Don't want to bother you if you are not interested in comparing stories. Thanks again for the response and I hope your daughter does well.

03/03/09

Reply from lele1016:

HI - sorry i didnt get back sooner , just saw the message . My daughter too has yet to have a cause for her sudden uveitis . January of 2008 , she woke up with a red eye , and a lil puffy , i thought maybe pink eye took her to ped, they gave her drops .. the usual , well after a day or two , no change at all and ped changed medicine. She said that if it didnt help she would have to go to optho. NO change , so i took he to my family optho , wwho started pred forte drop , and atropine ( to keep the eye dialated) , This all began in the left eye, but was progressing to the right. After those drops for 1 week , still no change , and really becomming worse, optho sent us to a retina specialist . Retina specialist had us come back a week later with just staying on the drops. when we returned , no change , and she did a steroid INJECTION in my daughters eye !!! well that about put me through the roof , and I started searching for a Pediatric optho-

a wek later we had an appt with childrens hospital ped optho, at that point my daughter had been on steroid drop , and atropine for nearly a month , had the injection, and was having trouble readin because of dialation . The ped optho placed on 40mg of oral steroids , and explained how the steroids must be tapered, and that it may be a looonnnggg process. My daughter became a sad,moody,complusive cleaning, always crying little girl , she gained weight ,quickly , and honestly , it was the hardest thing i have ever gone through as a parent so far.

After bing on the oral steroids and being able to taper down to 10mg instead of 40 a day , she flared back up !! Inflammation was back , we added drops, only then to cause high eye pressure , and add more glacoma drops . I was hopeless, i thought the same thing , all this medicine for a healthy child so fast . I even started reading about herbal meds , and anything that seemed like it may work better. After flare up at 10mg , and topical case high pressure , optho sent us to a reaumotogloist(sp?) . they recommended that we start MTX 7 mg ( which is a small small dose weekly ) and begin remicaide infusions . I CRIED !!! but complied , we did our first infusion 5/9/08, then i tik 2 weeks later , then 8 weeks later . The dr, started both medications at the same time . after the first infusion and finishing of the tapering of the oral steroid , I COULD NOT BELIEVE , within a few days , my daughter starting acting somewhat normal . By the time school ended , she was back to normal , and doing the 7mg mtx weekly , and infusions every 8 weeks TOTALLY INFLAMTION FREE until late november 2008. In which there was only a small flare up , wich was gone within 2 weeks . Her reauthologist , did increase MTX dosage , and next appt , NO INFLAMMATION :)
Now today is her 11th bday , still no inflammation . My biggest concern now , is with all the side effects later in life from the remicaide , when do i know to stop ?? doctors say 1 year from last date of inflammation . so ... hopefully soon .

I have racked my brain , and googled uveitis a million times , because I too thik it is crazy that she has no underlying condiotion. She is half african american , and her grandmother has sarcoidois ( which can cause inflammation) , but all blood work
has been negative. They have no reason , I say she is the 1 in 40,000 that have unexplained uveitis . I did however just read on dr fosters site that there is a link between shingles and uveitis , which makes me think about the summer prior to all this begining . Her father had " a rash / allergic reaction " so he said , and shortly afterward my daughter , and his 3 others had chicken pox. Which is related to the same virus that causes shingles . which he now says thats what he thinks it might have been . Who knows , i am always looking for a reason why this happened to my baby, and pray that it willnot effect her later in life . I hope your daughter is doing better , maybe you have already switched meds. Please let me know

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chagstein

101 Points

03/05/09

Thanks for taking the time to reply! It is comforting to me to be able to talk with someone else in a similar situation since this disease is so rare and mysterious! So happy to hear that your daughter is feeling better. I hope she is able to stay inflammation free!! We are not there yet but getting close. My daughter is on 10mg of MTX weekly and predforte drops twice a day. We are down to 0 cells in the left eye and 2 cells in the right which is a dramatic improvement from 11/08 when we had 4+ inflammation in both eyes. The start of it was similar to what you described happened to your daughter...red eyes one day which we thought was pink eye! We still do not have a cause but it seems like that is common in a lot of the cases. After reading some of the stories posted on Dr. Foster's web site I felt thankful that our situation was not that bad! There are some really persistent and much more complicated cases of uvetitis! I can't even imagine how it must have been when your daughter had to have the injection in her eye!! All I know is that this whole situation has really made me appreciate my children's health! I keep telling myself, this could be so much worse!!! From what I had read on Dr. Foster's site it sounded like he recommended being on the medication for 2 years after being inflammation free. I wonder about this all the time. We are not even there yet but I am always wondering what the long term effects of the MTX might be. My daughter seems to be tolerating it pretty well and we are only seeing our ped. op every 2 months and the rheumatologist every 3 months at this point. She has lab work drawn every 6 weeks (that's always fun!). Again, I appreciate you sharing your story with me and I wish you and your daughter all the best! I do not go on the uveitis web site that often these days but when I get a message it goes to my regular email so I can see it. Please keep in touch and let me know how your daughter is doing. Where are you located? We are in Southern CT. Happy 11th bday to your daughter!
Original comment »
chagstein

101 Points

12/16/08

Hi,
I just read your response to my posting and although it makes me sick to my stomach to hear about another child suffering from this horrible disease, I was very happy to hear from someone else who is going through a similar thing. Thank god for Dr. Foster and this web site, it has been a great resource to me. We first learned of this uveitis thing in mid Nov. when my daughter's eyes became red, swollen and painful out of the blue one day. Now, mid Dec, 30mg prednisone daily, 10mg MTX weekly, predforte eyes drops every 3 hours and cyclogyl drops every night. The whole thing makes me want to vomit! How could a healthy 5 year old be fine one day and weeks later be on all these medications???? The comment you made about your daughter completely changing while on the steroids really hit home. My daughter has responded the same. My usually bubbly, happy go lucky little girl has become a child that I don't even recognize. Always looking sad, crying at the drop of a hat and difficult to deal with at times. We also have the physical changes as well. She is constantly complaining about being hungry and despite our efforts at offering healthy food choices she has definitely gained some weight. The kicker for me still is how random this is. She has never had any other health problems. They say the most likely cause is JRA but she has never had any symptoms. So frustrating!!! Does your daughter have a definitive cause for her uveitis? How long on the methotrexate before you added remicade? You said you finally got your daughter back, when did that happen? Obviously, I have a million questions and would love to pick your brain about all this. Don't want to bother you if you are not interested in comparing stories. Thanks again for the response and I hope your daughter does well.

03/03/09

Reply from lele1016:
HI - sorry i didnt get back sooner , just saw the message . My daughter too has yet to have a cause for her sudden uveitis . January of 2008 , she woke up with a red eye , and a lil puffy , i thought maybe pink eye took her to ped, they gave her drops .. the usual , well after a day or two , no change at all and ped changed medicine. She said that if it didnt help she would have to go to optho. NO change , so i took he to my family optho , wwho started pred forte drop , and atropine ( to keep the eye dialated) , This all began in the left eye, but was progressing to the right. After those drops for 1 week , still no change , and really becomming worse, optho sent us to a retina specialist . Retina specialist had us come back a week later with just staying on the drops. when we returned , no change , and she did a steroid INJECTION in my daughters eye !!! well that about put me through the roof , and I started searching for a Pediatric optho-

a wek later we had an appt with childrens hospital ped optho, at that point my daughter had been on steroid drop , and atropine for nearly a month , had the injection, and was having trouble readin because of dialation . The ped optho placed on 40mg of oral steroids , and explained how the steroids must be tapered, and that it may be a looonnnggg process. My daughter became a sad,moody,complusive cleaning, always crying little girl , she gained weight ,quickly , and honestly , it was the hardest thing i have ever gone through as a parent so far.

After bing on the oral steroids and being able to taper down to 10mg instead of 40 a day , she flared back up !! Inflammation was back , we added drops, only then to cause high eye pressure , and add more glacoma drops . I was hopeless, i thought the same thing , all this medicine for a healthy child so fast . I even started reading about herbal meds , and anything that seemed like it may work better. After flare up at 10mg , and topical case high pressure , optho sent us to a reaumotogloist(sp?) . they recommended that we start MTX 7 mg ( which is a small small dose weekly ) and begin remicaide infusions . I CRIED !!! but complied , we did our first infusion 5/9/08, then i tik 2 weeks later , then 8 weeks later . The dr, started both medications at the same time . after the first infusion and finishing of the tapering of the oral steroid , I COULD NOT BELIEVE , within a few days , my daughter starting acting somewhat normal . By the time school ended , she was back to normal , and doing the 7mg mtx weekly , and infusions every 8 weeks TOTALLY INFLAMTION FREE until late november 2008. In which there was only a small flare up , wich was gone within 2 weeks . Her reauthologist , did increase MTX dosage , and next appt , NO INFLAMMATION :)
Now today is her 11th bday , still no inflammation . My biggest concern now , is with all the side effects later in life from the remicaide , when do i know to stop ?? doctors say 1 year from last date of inflammation . so ... hopefully soon .

I have racked my brain , and googled uveitis a million times , because I too thik it is crazy that she has no underlying condiotion. She is half african american , and her grandmother has sarcoidois ( which can cause inflammation) , but all blood work
has been negative. They have no reason , I say she is the 1 in 40,000 that have unexplained uveitis . I did however just read on dr fosters site that there is a link between shingles and uveitis , which makes me think about the summer prior to all this begining . Her father had " a rash / allergic reaction " so he said , and shortly afterward my daughter , and his 3 others had chicken pox. Which is related to the same virus that causes shingles . which he now says thats what he thinks it might have been . Who knows , i am always looking for a reason why this happened to my baby, and pray that it willnot effect her later in life . I hope your daughter is doing better , maybe you have already switched meds. Please let me know

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