Love, Lucianna: January 2014

Tuesday, January 7, 2014

Hooray! It was a false alarm!

Hi friends and family!

We are shocked but absolutely thrilled to report that we had a false alarm! Lucianna's eyes are still holding steady, (1 cell in the left eye), and she is NOT flaring! The ophthalmologist says that she could be experiencing the pain, itchiness and redness because of the dryness in the air and the use of a humidifier! Whewweeeeee! I am so relieved.

Thank you all for such awesome support! It sounds like the meds are working: .7 mls of Methotrexate administered orally each Friday night and Meriva Cucumin, 1/3 of a capsule mixed with her folic acid and applesauce each day. For those reading who have a child with Uveitis, you can buy the Meriva Curcumin on Amazon. I am now starting to believe that the Curcumin, along with the Methotrexate, might be keeping Lucianna's eyes stabilized. Our next appt is in April and I am hopeful that at that appointment Lucianna will be completely inflammation free!

On Thursday, January 9th she visits her Rheumatologist - she is physically showing no signs of inflammation in her joints, so this appointment should be a piece of cake!

Happy 2014!

Love,
Lucianna's Proud and Relieved Mama

Friday, January 3, 2014

Can you hope and worry at the same time?

Christmas 2013 - Waiting for Santa

Dear friends and family,

We had an absolutely wonderful Christmas holiday. The girls were spoiled with gifts from Santa and family beyond words. We enjoyed some fun sleepovers at Grandma and Papa's house (a first for us), and we spent nearly a week with Nonna and Papa and all of our other wonderful family in NY. I wish we could bottle the holiday spirit and drink it all year long. I still haven't taken down my Christmas tree...and I am one of those people who is desperate to take it down on 12/26. This year the holidays seemed too short as did the 3 month reprieve we received at our last eye doctor visit in November. So, around mid-December I could see some redness in Lucianna's left eye, but only intermittently. It isn't uncommon for anyone to have red eyes this time of year with how dry it is outside (and inside). Then after Christmas she started telling me that her eyes hurt. We were in NY...miles from her doctor. We decided that if she complained again the next day, we would contact a local ophthalmologist. She didn't complain. She complained again on New Years Eve and knowing that the next day was a holiday, we had to just wait. I hate the waiting. So on 1/2, I called Hopkins and she has an appointment this Monday.

Granted the worrying is not good for me. Granted the what-if's are bridges we shouldn't cross until we get to them, but I am her mother. This sweet, funny, happy kid should not have an illness that could rob her of her eyesight. It's just not fair. As her mother, I can't help but worry. It is normal, human and expected. If I don't worry, what the hell would I do with all this time on my hands? (lol)

As I sit here and wait for Monday to come...it feels like months away. It can't come fast enough. How many more times are we going to have bumps in the road? A mom on the private Facebook Uveitis group that I am part of said that her son is 12 years old, diagnosed at 2 years old and just had his first FULL year of quiet eyes. Sure, I was so happy for her, but I was a bit deflated at the same time. She waited 10 years for that??? Do I have what it takes to do this for 10 years? Damn right I do! (But boy am I going to need all the help I can get!)

So, while I worry, I will cross all my fingers and toes. I will dance the "clear-eye dance" and when all else fails, I will hope.

Much love,

Lucianna's proud and admittedly worriful Mama.

"Once you choose hope, anything's possible." - Christopher Reeve

Naproxen: CURRENTLY DISCONTINUED 8/20/2013. 6 ml's morning, 6 ml's evening (Noon time dose was discontinued with the increase in the Methotrexate.)

Zantac: 5 mls in the am & pm for stomach upset - Restarted May of 2014, last dose prior to that was 8/20/2013. 5 ml's morning, 5 ml's evening through 2015.

Pred Forte:- RESTARTED JULY 2015, (twice a day for a while) last dose was MAY 2015. Prior to that started: 10/15/14 - started weaning in March 2015. Dose: 1 drop in affected eye.

1 drop per day until Aug. 19, 2014, then discontinue.. (The first 2 1/2 weeks of being prescribed this in Sept 2012, the dosage was "hourly" in both eyes) (DISCONTINUED 2/26/13-5/29/13) - Restarted June 5th, one drop, left eye only for 1.5 weeks only. Discontinued on June 22, 2013. Limited use between Feb 2013 and June 2013)

Cyclopentolate 1%: (DISCONTINUED) -1 drop right eye every night (these burn)

Methotrexate: SEPT 2015 - New dose .7mls. **February of 2015, started administering it as an injection to increase potency. It worked - clear eyes as of May 2015. Injections are done weekly at .7mls. July-August dose was .6mls injected Prior to 2/2015 - latest dose was .8 ml's "orally" every Friday night - latest dose began on 7/2014 - (September 2012 - .3mls, December 2012 - .4 mls, February 2013 - .5 mls, April 2013 - .6mls, June 2013 - .7mls to July 2014 )

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, January 7, 2014

Hooray! It was a false alarm!

Friday, January 3, 2014

Can you hope and worry at the same time?

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