eye problems with JRA

[gordbentley]

yah my eyes get scratchy sumtimes but nothing huge. eye inflammation is associated with all kinds of arthritis but is more common with reactive arthritis and ankylosing spondylitis. my joints are doing pretty good but i get eye discomfort here and there. but im not a doctor so i dunno if what i said helps other than the fact that it is a symptom you can get with these conditions

[Suzanne]

I’m sorry this has come up for you, but I wouldn’t panic yet. It is good that she is getting regular eye exams because it will catch anything that is brewing. If your ped opth is like ours, he will treat at the first sign of trouble. My daughter has used pred forte drops twice in the six years since she was diagnosed. He prescribes them even for just one inflamed cell. Both times things settled right down and I hope that will be the case for your child, too.

I am seeing other parents post more and more often about uveitis that is so hard to control in kids who are on biologics. It seems like if they control the arthritis, it comes out somewhere else.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

Transam deleted the original question?

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[gordbentley]

it appears so? hope her kid is ok

[Maz]

@Suzanne wrote:

Transam deleted the original question?

Hi Suzanne,

I was wondering about that, too…where the original question went? I don’t think forum members have the ability to delete posts and they need to ask a moderator to do that for them if they want their own post removed, so I’m concerned this new person’s post might have been deleted by mistake with all the SPAM we’ve been getting.

The SPAM problem now seems to have been controlled with the settings the webmaster has put in place, but I just hope this poster’s original post wasn’t deleted in error. If so, hope this poster will forgive the mistake. 😳 It has been a nightmare for volunteers and, besides being a complete waste of time, there were hundreds of fake registrations that needed to be banned and their posts manually deleted.

If any newly registered members think they might have been banned and their first post deleted in error, please feel welcome to re-register and re-post!!!

[transam]

i posted this question. I registered on this site on 2-1-11 and on 2-2-11 the site no longer recognized me. Any way, the question is for my 5 year old daughter. We just visited her eye doc and we were told she has inflamation. We were given steriod drops to give 3 times a day. She has been on antibiotics for a year and has been doing great. she was diagnosed with JRA at 19 months. we did the methotextrate for 2 1/2 years until i found the book about Dr. Brown. We started seeing the eye doc as soon as she was diagnosed and every 3 to 4 months since. She has always had a good eye exam until yesterday.

[gordbentley]

in some cases rheumatic arthritic diseases become systemic, it is always a wise decision to have regular checkups to ensure that nothing on the inside is going on with your child. good on you for being a responsible parent transam!!! as for your account not being recognized, we have had alot of trouble with spammers infiltrating our discussion forum which has become quite a nuisance. the volunteers have to individually find these spammers and delete there accounts. you must have gotten thrown into the mix accidently considering this problem is fairly new and you are a new user your profile may have been mistaken for a spammer.

[transam]

Nikita,

I hope you get this message, my account will not let me respond to your question directly. Maybe someone else can notify you that i responded to you.
My daughter Ava is doing fantastic since we took her off of Methotextrate in Feb 2010 and started the antibiotics March 11 2010. Her personality really lit up and she became much more lively. She has always been happy, very thoughtful, a little shy and just a great kid and her little personality really woke up after we stopped the Methotextrate. She is just such a happy little girl. Maybe its just me because im her dad and she is my only child but she is just the best. Her preschool teacher also noticed her increased mobility and overall happiness after we switched to antibiotics. Her teacher is 76 and has seen many kids in her days so i will take her word on it.
Ava is seeing Dr. F in Riverside (im not sure is im allowed to use full names) and he is extremely thourough. The blood tests he did were pages long and checked everything. When we had her at Childrens Hosp. of Orange County they only checked one thing, her RA factor. Since we started antibiotics Ava’s blood tests (RA factor) get a little better each time we have gone. Now that this eye issue has come up we are giving her steriod drops three times a day since this past Tuesday and will continue until friday 2-11. Ava has an appt. with Dr. F next Wednesday so we are bringing the eye test data for him to look at it. After we talk to him i can let you know what he has to say. I would recommend Antibiotics as, we can always go back to the Methotextrate if we had to. The Xray technician at Dr. F’s said they have patients from Egypt, Europe, South America etc. I am lucky, I live in Yorba Linda CA and Dr. F’s office is 15 minutes away.
Just by chance i met a man in my field of work that has a son with JRA. the boy got it at 18 months and he is now about 30 years old. The boys mother said they tried all the usual drugs and everything else until the boy was 18 but the drugs were ruining him and he wasnt getting better. They heard about Dr. F and and the Antibiotic theory so they decided to do it. she said the results within three months were amazing. The boy has now been off of all drugs for 8 years. I met this family just at the time We were being told to raise the Methotextrate dose and start Enbrel. My wife and i had just read the book about Dr. Brown, just met this family with the boy and so we made the decision to switch. it was the best decision we have ever made.
If you have any other questions please let me know, I also hope your child will be OK too.
Mark

[Maz]

Mark, so glad you came back and that we were able to pick up that SPAM glitch…so sorry you got booted. We’re thinking your user name might have been similar to the unusual Spammer user names and you were just accidentally removed. Very sorry about and I so appreciated your amazing post! Thank for sharing about your daughter’s progress and also your friend’s son’s progress….do you still have contact? Would he be willing to let us write up his story in an eBulletin to help other JRA parents?

I will post the link to your reply to Nikita on her thread so she won’t miss it. No doubt it will help her in her decision-making process. 🙂 So kind of you…and thanks muchly for forgiving us the mistake! 😳

[nikitasahney]

Thanks a lot Mark….:) I felt wonderful to read your story. All my best wishes for your daughter. I am convinced about AP after reading everyone’s stories.

I am going to completely convince my family that we should give it a good shot. USA is really far for me to keep visiting frequently (and expensive!!) but I can get a physician in my city to follow the advice of the AP doc from there. Another question I have is….How many times in a year do you need to visit the doctor personally with your daughter. This will really help me to work out the economics.

Maz – Thanks so much for letting me know that Mark had replied. Its been great out here. I haven’t felt so positive in ages 🙂 God bless you guys!

[transam]

Nikita,

We take her every three months and each time blood is taken and analyzed. We started march 11, 2010 then went again in June, Sept and Nov. So far the medication and dose has remained the same.
Azithromycin, 125 mg, on Monday and again on Thursday, crushed and mixed with apple sauce.
1/2 teaspoon of Probiotics in water each morning
1 teaspoon of Imunoglobulin in juice each night
And since she cant swallow pills we give her Gummy Fish for the Omega Oils.

I will double check the dose on the Antibiotic and whether its teaspoons or table spoons on the other items after i get home from work.

Mark

[transam]

I just got back from my daughters appt. with Dr F. in Riverside, and we discussed the Uveitus. As long as the use of the steriod drops is short term and infrequent there should be no damage from them.

As far as Ava’s arthritis they said all her blood tests looked “absolutely great”. Her liver function, potasium levels, Kidney’s etc. were all great. Her SED rate has dropped from 18 in Feb of last year, to 15 in June, To 10 in Nov. and now to 3 today! We were told to maintain all her current medications and dose’s. The dose’s i posted previous were correct, it was teaspoons.

[nikitasahney]

Hi Mark,

My daughter has been on topical steroid drops for a year and a half. I take her for check ups every 6 weeks. her uveitis was chronic and we had to give her 10 time s a day in the begining. She continues in the right eye twice a day till date.

I hope she gets off the right eye too. And I hope your daughter gets well also really soon.

Take care,
NIkita

[nikitasahney]

@transam wrote:

Nikita,

I hope you get this message, my account will not let me respond to your question directly. Maybe someone else can notify you that i responded to you.
My daughter Ava is doing fantastic since we took her off of Methotextrate in Feb 2010 and started the antibiotics March 11 2010. Her personality really lit up and she became much more lively. She has always been happy, very thoughtful, a little shy and just a great kid and her little personality really woke up after we stopped the Methotextrate. She is just such a happy little girl. Maybe its just me because im her dad and she is my only child but she is just the best. Her preschool teacher also noticed her increased mobility and overall happiness after we switched to antibiotics. Her teacher is 76 and has seen many kids in her days so i will take her word on it.
Ava is seeing Dr. F in Riverside (im not sure is im allowed to use full names) and he is extremely thourough. The blood tests he did were pages long and checked everything. When we had her at Childrens Hosp. of Orange County they only checked one thing, her RA factor. Since we started antibiotics Ava’s blood tests (RA factor) get a little better each time we have gone. Now that this eye issue has come up we are giving her steriod drops three times a day since this past Tuesday and will continue until friday 2-11. Ava has an appt. with Dr. F next Wednesday so we are bringing the eye test data for him to look at it. After we talk to him i can let you know what he has to say. I would recommend Antibiotics as, we can always go back to the Methotextrate if we had to. The Xray technician at Dr. F’s said they have patients from Egypt, Europe, South America etc. I am lucky, I live in Yorba Linda CA and Dr. F’s office is 15 minutes away.
Just by chance i met a man in my field of work that has a son with JRA. the boy got it at 18 months and he is now about 30 years old. The boys mother said they tried all the usual drugs and everything else until the boy was 18 but the drugs were ruining him and he wasnt getting better. They heard about Dr. F and and the Antibiotic theory so they decided to do it. she said the results within three months were amazing. The boy has now been off of all drugs for 8 years. I met this family just at the time We were being told to raise the Methotextrate dose and start Enbrel. My wife and i had just read the book about Dr. Brown, just met this family with the boy and so we made the decision to switch. it was the best decision we have ever made.
If you have any other questions please let me know, I also hope your child will be OK too.
Mark

Hi Mark…..I had a quick question – Is your daughter on any special diet while following AP? – Nikita

[transam]

Nikita,

No special diet. Of the many tests done on her blood/urine, one was to check for Gluten allergies and she wasnt allergic to it. I cant remember most of the tests they ran on her blood/urine as the list was a couple pages long. Her blood/urine analysis was very thourough.

[Author]

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