Love, Lucianna: July 4th - Just another day...

Wednesday, July 4, 2012

July 4th - Just another day...

HAPPY 4th OF JULY!

So we have lived in West Virginia for over five years now, I am still amazed at how much "country folk" love their fireworks. It has really been July 4th around here since mid-May and somehow I don't see an end in sight. Just what we need, crazy drunk mountain men with fireworks!

Well unfortunately, Lucianna had a tougher day than normal. She did not get around very easily and requested to be carried frequently today. At one point she was scooting along on her bottom since I think getting up and down was just too difficult but hey, scooting is pretty fun! Her spirits were good; she was joking, being silly and having fun playing with Bella. She spent a lot of time sitting and playing in one spot.

I chose to work from home today, and got quite a bit done which was great! I did this so that I could "bank the holiday" in case I need a day off for a doctors appointment down the road. Lucianna's condition has made me think of a lot of things, including how little sick time I get at my job and how fast it can be spent with a situation like this. Daddy had to work today...so it was just like any other day for us. Sort of a boring day but doing anything active was just not in Lucianna's capacity, not to mention, it was about 98 degree's out! Blaauuacck! Fireworks? Well my girls are usually asleep by 8:30pm, but next year, come hell or high water, we will see fireworks together as a family! I am so excited to see their expression with the first burst in the sky!

Tomorrow makes 5 weeks since her symptoms started to appear and quite frankly, they can disappear any time - because I am done!!! I hope tomorrow proves to be a more comfortable and active day for her - I miss seeing her run.

Have a safe rest of your holiday...fireworks are ending here soon. Hooray!

Love,

Lucianna's Mommy

1 comment:

Winnie808July 10, 2012 at 11:03 AM
Looking forward to seeing her run too! I hope subsequent days have been a little easier. :(
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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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Wednesday, July 4, 2012

July 4th - Just another day...

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