Love, Lucianna: August 2013

Tuesday, August 27, 2013

A long awaited improvement!

She is such a good patient.

Dear Friends and family,

Last week we had our 2 month follow up with Lucianna's Uveitis specialist. At our last appointment we were instructed to increase her chemo drug, Methotrexate, to .7 mls, discontinue drops and see how her eyes respond. In addition to the drug increase, we added an herb supplement that is talked about in the Uveitis community called, Curcumin (aka Tumeric). It is the main component in the Indian spice, Curry and believed to have anti-inflammatory, anti-oxidant and even anti-cancer properties. We have found a study from NIH back from 1999 that patients with Uveitis had a significant response to it so with the approval of our doctor we are using it for Lucianna. Curcumin along, (meaning sprinkled in your food by buying it from the store) can have absorption issues - it isn't known how much is absorbed into the body, etc. A company called Meriva claims to have found a way to manufacture it so that the body absorbs more effectively. It is available on Amazon for about $30. Since our last appt, we have been giving 1/3 of a capsule daily to Lucianna. (We just mix it into applesauce.)

I don't know if it's the Curcumin, the increase in the Methotrexate or both but Lucianna's left eye went from between mild/moderate inflammation to TRACE! (The right eye has been quiet for a few months.) "Trace", (aka, "Faint"), is the next classification right below, "None". Were we hoping for none, but trace works too. Any improvement over this long battle is a success! As a reminder, we have to get to "none". Trace is not "good enough", but we're incredibly happy for the improvement! So we're sticking to the Meriva Curcumin and staying positive that our appt in November shows her eyes totally quiet! We were also able to discontinue the twice daily Zantac and Naproxen. I am so happy to not be pumping her with these drugs anymore.

I can't believe the summer is now over. Where does the time go? The girls started school last Thursday and they are both very excited! Bella is in the 1st grade and Lucianna is in Jr. Kindergarten (preschool). Lately, Lucianna has been intermittently climbing in our bed. I can't say that it bothers me, because I think it's cute, but it bothers Daddy. Daddy is the recipient of her size 10 feet in his back as she lays horizontal in our bed. I get to see her sweet face on my pillow - what's better than that?!?! I look at her as she sleeps and just hope that one day I can stop blogging about her health because she's healthy. My only wish is that she survives these JRA years with her sight and joints in tact. I am no fool to believe that once her eyes are completely quiet that she will never get the Uveitis back, but I will revel in the joy of each achievement and live for each day that things are "quiet".

"Pick the day. Enjoy it - to the hilt. The day as it comes. People as they come... The past, I think, has helped me appreciate the present - and I don't want to spoil any of it by fretting about the future." -Audrey Hepburn

One of my favorite pictures of her - all babies look so cute
with a shirt pulled over their head!

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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A long awaited improvement!

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