Tuesday, January 7, 2014
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!
Lucianna's Proud and Relieved Mama
Posted by Nicole at Tuesday, January 07, 2014
Friday, January 3, 2014
|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.
Lucianna's proud and admittedly worriful Mama.
"Once you choose hope, anything's possible." - Christopher Reeve
Posted by Nicole at Friday, January 03, 2014
Thursday, November 21, 2013
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!
MERRY CHRISTMAS AND HAPPY NEW YEAR!
|There were never such devoted sisters...|
Posted by Nicole at Thursday, November 21, 2013
Tuesday, August 27, 2013
|She is such a good patient.|
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".
|One of my favorite pictures of her - all babies look so cute |
with a shirt pulled over their head!
Posted by Nicole at Tuesday, August 27, 2013
Monday, July 15, 2013
I never thought I would be using Lucianna's blog to update you on Bella who is typically the vision of health!
That leaves us 3 other situations: 1. that it was just a fluke related to her being sick or 2. possibly some inflammation occurring near her heart but that's unlikely since these are caused by Rheumatic diseases that take a lot longer time to fester. The last condition is called, Supraventricular Tachycardia .This condition occurs when there is an extra nerve in the heart that causes the electrical system to not work properly causing an irregular or fast beating heart and a fast pulse. Because I didn't get a pulse rate (bad mommy), when the episode was happening, we can't fully be sure the problem is SVT. SVT occurs or rears it's ugly head, at times of physical vulnerability...so when you are sick, drinking too much caffeine, too much mountain dew, or chocolate. None of these fit Bella -except being sick. These heart palpitations come on quickly and can resolve within a few minutes or a few hours. They usually come back, but there is no clear answer on the timing...it could happen in a cluster or not for years - but again at a time when there is physical vulnerability. SVT is typically not life threatening. Treatment is a beta-blocker or surgery of the heart done with a catheter through the leg to remove the part of the heart causing the issues.
Her cardiologist has ordered an ECHO, and it is scheduled for Wednesday, 7/17. After the ECHO, we can be assured that the only other thing to watch for is SVT. Then we just watch and wait. They want me to get a stethoscope and I need to practice taking heart rates and get comfortable and good at it. If she has another episode of irregular heart palpitations, I get the rate and if it's over 160, go directly to the ER. At that time, we will be given a heart rate device that Bella wears all the time so that we get a good measurement with the next episode. Then the activity is recorded and we know for sure what's going on.
So once we get an echocardiogram that looks normal, then we know the only other thing it COULD be is the SVT. And SVT is something there is treatment for!
So we watch and wait and take it one day at time!
Posted by Nicole at Monday, July 15, 2013
Saturday, July 13, 2013
|Abigail let me borrow this!|
I have gotten a few texts and emails asking about Lucianna's health and wanted to post something just to keep everyone updated. Currently, we are in a waiting game to see if the latest increase in the Methotrexate drug has eliminated the inflammation that persists in her left eye. We are also giving her Curcumin (Meriva brand), that we learned through a medical study has shown to assist those with Uveitis. We don't know if it'll work, but her ophthalmologist says that it won't hurt. I haven't heard her complain about her eyes and I haven't seen redness, (knock on wood). The only eye issue she has is significant sensitivity to light. When outside, she wears sunglasses everywhere she goes. She is practically unable to open her eyes without sunglasses. We have had a busy summer so far- lots of playdates/sleepovers, a visit to NY in May, June and July. Swimming lessons,(the first round of two weeks worth) and our first "cousins vacation" to Sesame Place! Lucianna's mobility is awesome. She tires out when doing long or strenuous walks, (but so would I!) We still keep her stroller close at hand for those scenario's and so far she seems completely comfortable jumping in it when it's needed.
|Do you mind sharing that?|
|Riding the swings with Mommy!|
If I don't post anything next week or you don't get an email/text, consider Bella A-OK. :) As for Miss L, we will know August 21st if there has been an improvement in her eyes.
We hope all of you are enjoying your summer and staying cool!
"Daughters are like flowers, they fill the world with beauty,
and sometimes attract pests." - author unknown
Posted by Nicole at Saturday, July 13, 2013