Love, Lucianna: April 2013

Tuesday, April 16, 2013

One stubborn left eye...


*Sitting with Daddy in the Waiting Area*

Dear friends and family,

What a great patient she is! We promise her the moon!

Well today we did not get the news we hoped for which was, "the inflammation is gone/quiet/under control" in her eyes. We were told that she still has "some" inflammation in the left eye. On a scale of 1-4, with 4 being "severe", she is a 1. We like 1's more than 2's, 3's and 4's, that's for sure.

So what does this mean? It means she still has inflammation and we need to get it under control soon - period. Dr. "D", an expert in the field of Uveitis, says that young children who have Uveitis and get it under control fairly quickly, have a much better outcome long term. He says she will eventually "grow out of it" but how we do right now at getting it quiet will determine if she gets there with or without any irreversible damage to her eyes. So he has advised that we increase her Methotrexate dose once again. Currently, she takes it orally and tolerates it well, (thank goodness). We are grateful that we don't have to give her this medicine intravenous - many of the kids with JRA/Uveitis only know shots. Dr. D wants us back in 8 weeks, (June 12th), to see if the increased dose has done the trick. Thanks to all of you who sent well wishes, crossed fingers and your support...keep it coming!

This June 7th marks the one year anniversary that we have been dealing with this frustrating illness - Juvenile Rheumatoid Arthritis. Maybe the anniversary will bring us peace and "quiet". That would be a nice gift after a year of so much uncertainty and worry. We are excited for the day we can post that Lucianna is free of inflammation.

Love,
Lucianna's proud Mama

Her Diagnosis & Current Condition:

***NEXT EYE APPT CHECK UP: Halloween 2014

Diagnosis: Uveitis and Pauciarticular Juvenile Rheumatoid Arthritis.

Summary of her health issues and current condition: Lucianna started presenting symptoms on June 7, 2012. It occurred one week post a viral infection. It started with a limp and a swollen knee and quickly turned into several affected joints and ultimately, the inability to walk for much of the summer. She has inflammation in both knees, her left wrist, left ankle and possibly her hip. She was on only Naproxen and Zantac through the summer. Her doses were increased over time to the maximum safe dose. On September 9th, I noticed one of her eyes was red/blood shot, almost as if pink-eye was coming...the next morning, it cleared up. That day we also noticed a very subtle "cloudiness" about her eyes. So we made an appt and she was seen the next day. On September 11th she was diagnosed with Uveitis in both eyes, a serious eye disorder where inflammation attacks the eyes. Her Uveitis was considered severe. Immediately, we chose to move forward with a 2nd line of defense: Methotrexate, a very low-dose chemotherapy drug, in addition to the Naproxen and Zantac, an "hourly" steroid drop in each eye along with one nightly dilating drop. She will be monitored on Methotrexate to make sure she has no side effect of liver damage. The drops are not safe for extended use; the risk with them is glaucoma and cataracts - which also cause vision loss. So we are hopeful that she remains side effect-free. Typically it takes a few months for the eyes to get under control with the drops. The addition of Methotrexate should also help her JRA and Uveitis. We are told that her arthritis will become more "quiet" and her Uveitis will be our biggest concern. Currently, she gets around on her own very well. She still has a "wooden legs" appearance at times, but we are grateful that she's mobile. Her eyes are improving and we are officially trying to wean her off the drops. The eye doctor did caution us that each week can bring a new circumstance but so far she is responding to the drops well. We will continue to have frequent appts until she's remained free of inflammation for a while. Once we are able to discontinue drops, there is no guarantee that she will not have re-occurrences. All of these drugs she is on has side effects that would make any parent cringe at the thought of having to give them to their child. Bottom line, we have to do something despite to serious risks of these drugs to keep her from any joint damage or worse, profound vision loss. We will remain strong in our fight against these diseases.

UPDATE: 2/26/13 - Drops discontinued, will be closely monitored for next 2-4 weeks to make sure the inflammation remains at bay.

UPDATE: March 2013: After quiet eyes, on her return check up the inflammation is back. Her Rheum and eye doctor decided to increase the MTX to .5 (her 2nd increase) and see if her eyes inprove after 30 days. At the 30 day mark, we are seeing a Uveitis specialist. Stay tuned.

UPDATE: 4/16/13 - Unfortunately, her left eye is very stubborn and as a result of our appt to see the Uveitis specialist, we need to increase her Methotrexate dose once again. She is now on .6mls.

UPDATE: 5/28/13 & 6/10/13- We are headed back to the eye doctors (earlier than our scheduled appt) as Lucianna is complaining of eye pain. We were scheduled to go back to Dr. D on June 12th, but we are going to see her other pediatric ophthalmologist who is slightly closer to home just to be sure she's okay. It was discovered that Lucianna has a cataract in her left eye, a conditional called Band Kerotopathy (calcium deposits in the eye) and still has inflammation in her left eye. We find out Wednesday, June 12th what our next steps will be. 9 months of this, is absolutely unacceptable to me.

UPDATE: June 12th - Dr. Dunn says that there is still inflammation in her left eye but it's minor. Nonetheless, any inflammation is not good. We have to get it under control. Ideally, you want to have the eyes quiet "without" the use of steroid drops. We have chosen to only use them for a weeks time at the doctors' recommendation, and then he wants us to increase the Methotrexate once again to .7mls. He says we can go up to 1.0 mls. So we have some wiggle room. We are hoping that we don't have to go on a biologic like Humira to get the eye quiet. So fingers are crossed. We go back in 2 months.

UPDATE: 8/22/2013: Left eye is finally at "trace" cells. Sticking with the Curcumin and the MTX at .7 mls. Hopeful we reach quiet at next appt!!

UPDATE: 11/20/2013: Left eye is still at trace but we do have an improvement!!! Very thankful!

UPDATE: April 2014: Since increasing the MTX and adding the herbal supplement, Meriva Curcumin-SR - her eyes are finally inflammation free!

UPDATE: JUNE 2014 - Trace inflammation in left eye. Starting Pred Forte steroid drops again and increasing MTX to .8mls. Joint appt was great, joints are quiet!

UPDATE: JULY 2014 - Eye is once again clear, we can wean drops and continue with the increase in MTX. Next check up - October 2014

UPDATE: OCT 15, 2014 - Left has trace cells. Advised to go on Steroid drops at 1 drop per day for 2 month/until next appt in December.

UPDATE: OCT 30, 2014 - continued "painful eye", after trying allergy lubricating drops we are opting to have her eyes checked again by a local ophthalmologist. Our appt is 10:45am on Halloween. Hoping for nothing scary!

UPDATE: DEC-MAY 2015 - Switched eye doctors in Dec/Jan. Last eye doctor was comfortable with steroid drops, even small amounts and we were not comfortable doing that. Switched from oral MTX to injectable in March and got our first clear eye appt in a long time May 27th, 2015. Very happy!

Love, Lucianna

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Tuesday, April 16, 2013

One stubborn left eye...

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