Wednesday, July 2, 2014

"Uveitis" - the disease that does not go away quietly...

Lucianna and Bella - June 29, 2014
Dear Friends and Family,

Today, Lucianna had her routine check-up.  (She was inflammation free as of April, the first time in 575 days.)  That said,  I expected to get some not-so-good news today as Lucianna had been complaining of eye pain for about a week.  Some doctors say the disease is a-symptomatic, but that is not the case for us.  Lucianna does complain when she has a flare, she just does. "Coincidence", not in my opinion.  She has inflammation in the left eye, 5 or less cells which is considered, "trace" on the grading scale.  Trace is certainly not a terrible diagnosis, but any inflammation in her eyes will cause damage.  Her doctor wants to increase her Methotrexate drug dose to .8 mls, and wants her on steroid drops twice a day.  We know that untreated inflammation can cause a cataract, but so does the prolonged use of these steroid drops.  Lucianna already has a cataract in her left eye.   We asked the doctor if we could try the increase in the MTX first and see how she responds.  The doctor agreed to let us forego drops for right now as long as we get a re-check in 4 weeks, so that's what we'll do.  We don't want her cataract to worsen or for her to get another one, and really don't want her to face cataract surgery any time soon, so we are going to place all bets on Methotrexate.

On a happier note, we settled on our new home last Friday.  We are still unpacking boxes but we are already feeling the benefits of a closer work commute.  The girls love their new rooms and it's nice to have Daddy around more often!

Thank you for your well wishes, please keep Lucianna in your thoughts and we will send an update in 4 weeks.

Love,
Lucianna's proud Mama.

Tuesday, April 22, 2014

For the first time in 575 days...her eyes are clear!


The Wilmer Eye Institute at Johns Hopkins Hospital - April 9th

Dear friends and family,

It's been an exciting few months since my last post. The best news was at our eye check up on April 9th.  Lucianna has no inflammation in her eyes...not one cell...nada!  

So what does this mean?  It means that we finally got the medication dosing to the right level to control the Uveitis in her eyes.  She's not cured by any stretch, but the medication is keeping the inflammation at bay.   She is considered to be in a "medically induced remission" and the goal is to keep her inflammation free.  (That's the tricky part.)  So what doctor's recommend is that stay the course and wait.  Some doctor's believe that if we wait a solid two years and she's had no break-thru flares that we could, conceivable, start weaning her off the Methotrexate.  I have seen many families on our Facebook "Kids with Uveitis" group that have attempted to wean their child from the medications and suddenly they have a flare. So I'm not going to hold my breath.  However, I am focusing on the fact that her eyes are being controlled and not enduring any further damage.  Hooray!  Since last August, we also added,  Meriva-Curcumin SR.  (It's available on Amazon.)  Some studies have shown that the Curcumin may assist in the reduction of inflammation in the eyes.  Interestingly enough, since adding this herbal supplement, she has only seen improvement in her eyes!  We give Lucianna a 1/2 pill each day by simply mixing it into applesauce.  It's supposed to help with a lot of arthritis conditions as well.  Who knows if it's the Curcumin,  or the slight increase in her Methotrexate dose, but we are thrilled!

Something I never really blog about is that every 2 months Lucianna has to have her blood drawn to check for several things, but most importantly,  is liver function.  Methotrexate can cause issues with her liver, (among other things),  so every two months we have to see that all is well.  So far her blood work has come back normal, thank goodness!  I have to bring this up because this is a picture of her getting blood drawn (see left).  Have you ever in your life seen a braver child???  She's just an amazing little girl!  And Miss Bella is an awesome big sister.  Lucianna is unable to be out in the sun without her sunglasses.  She literally can't open her eyes.  Bella will often hold her hand and guide her to the car where her extra pair of sunglasses await her.  So sweet!

In late March, Lucianna turned 5.  It's hard to believe that it's been almost two years since the onset of her Juvenile Rheumatoid Arthritis and only 3 months after that, the discovery of the Uveitis.  I am sure glad those stressful, uncertain times are behind us! I had NO CLUE it would take this long to get here.

So last, but not least, after careful consideration, we have decided that after 7 years of living in WV, that it's time to move closer to our jobs.  So we have sold our house, and have found a home that's only 20 minutes from our jobs!  Putting the girls, particularly Lucianna, in a public school will definitely be a learning process since we have to set up a 504/IEP plan for her in the event her arthritis or her eyes flare and she needs some special consideration.  Never a dull moment!  That said, we are looking forward to having more quality time together and less time spent commuting!  

"Time is free, but it's priceless.  You can't own it, but you can use it.  You can't keep it, but you can spend it.  Once you've lost it, you can never get it back."  -H. MacKay

 CARPE DIEM!

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




Thursday, November 21, 2013

Another reason to be "thankful"!

Happy Thanksgiving to ME!



Dear Friends and family,

Thanksgiving is exactly one week from today and we have a lot to be thankful for in our house!  Yesterday, Lucianna had her 3 month check up at Wilmer Eye Institute at Johns Hopkins Hospital.  We are pleased to report that once again, she has had an improvement in her stubborn left eye.   

Lucianna is all smiles on the long and 'bowring", 90 minute ride there because of a special goodie bag she received.  A classmate's mom, and family friend, Sarah, gave Lucianna a thoughtful surprise of her favorite things, my little pony stuff. It saved me!  I was really touched by this gesture and clearly Lucianna was beaming.  (Thank you Sarah!)

So we have our appointments down to a science now.  The underground parking is never very easy, but I snapped this shot as we walked out of the garage.  How sweet is she clinging to her Daddy's leg?  We are usually running to the elevator because traffic and construction is never predictable and we are always late!

We waited two hours to see the doctor.  Yes, two hours.  This is the usual wait.  One time we had to wait 3 hours, a pretty unrealistic wait for a 4 year old.  We saw both a newbie doctor and then the associate professor that we always see.   Both doctors indicated that Lucianna still has some inflammation cells in her left eye (considered "trace") but that she has slightly improved since the last visit.  That's all we needed to hear!  Our goal is to get to no cells, but at this level she is not suffering eye damage, thankfully.  She is not considered to be in a "medically induced remission" until her eyes are totally clear - so that's the goal.  Unfortunately, her Uveitis specialist told us that he is taking a job in Philly, so we will have to see someone new.  (He's been with Hopkins 22 years.) The new doctor comes highly recommended by him.  I just fear a longer wait now that all his patients will transition to her.  The good thing is though, Lucianna is painfully shy around new people, especially men.  Maybe a female doctor will minimize that.  So we are continuing her on the Methotrexate at .7 mls (along with Folic Acid and Meriva Cucumin),  and return in February for our follow up.  I am hoping in February we get the news we are anxiously waiting for:  "Her eyes are all clear."  Until then, we are very grateful and happy that she headed in that direction!

Lucianna's next check up is in January with her Rheumatologist also at Johns Hopkins.  I will update you again after that appointment.

Wishing all of you the most wonderful holiday season!

Love,
Lucianna's Mama


MERRY CHRISTMAS AND HAPPY NEW YEAR!
There were never such devoted sisters...

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!