Monday, March 16, 2015

We knew this day may come...



We knew there may come a day that we'd have to give Lucianna her medicine by injection.  It seems that day is here.

At Lucianna's doctors appointment last week, it was discovered that she still has mild inflammation in her left eye after weaning her off the steroid drops once again.  This really came as no surprise to us since it's been the pattern for the last eight months.  We decided in December to switch to another ophthalmologist since our current doctor didn't have any concerns with repetitive use of steroid drops to quiet inflammation, despite the complications with long-term use.  Some of those complications are cataracts, glaucoma and other damaging effects.  Lucianna already has one cataract but luckily the location of it doesn't jeopardize her sight.  The new doctor has recommended that we increase the Methotrexate.  Lucianna is at the max dose now and we are very concerned about the risks to the function of her liver more than ever, and so is her rheumatologist.  

So we are at a crossed roads...do we increase the Methotrexate and hope that it doesn't cause her liver to stop functioning the way it should?  Do we add another medicine with it's own set of risks?  Do we switch from oral Methotrexate administration to injecting Lucianna?

Many of our other drug options are stronger and have risks that would make any parent cringe.  Risks like, Lymphoma, Skin Cancer or seizures.  We learned that Methotrexate given orally loses up to 20% of it's effectiveness, maybe more.  There is no real clarity on how much is absorbed and how much is not.  We knew this when we started Lucianna on it at 3 years old, but opting to give her weekly shots was not very attractive to us.

So this Thursday, we meet with the rheumatologist to discuss this plan.  Both the ophthalmologist and rheumatologist are on board and agree that moving to the injections is a good idea. On Friday, we will get training on giving her a shot and more training the next two Fridays.  This Friday, will be her first shot, likely given by a nurse and then I will be taking over. It's a common occurrence for kids to develop anxiety on shot day, my hope is that Lucianna will roll with it.

Lucianna will be closely monitored for the next several months to ensure the dosage (a bit less than usual) is enough, and she's improving.

Wish us luck as we embark into unfamiliar waters.  If I had to guess, I think Lucianna's Mom is going to struggle more with the shot than Lucianna will!

Sincerely,
Lucianna's Proud Mama



Monday, January 12, 2015

May 2015 be the year we've been waiting for...






Dear friends and family, 

Happy New Year!  I can't believe 2015 is upon us and we are starting our third year of Lucianna's battle with JIA and Uveitis.  

Since August, Lucianna has struggled with several minor eye flares.  They occur as soon as we wean her from the once a day steroid drop.  So what does, "minor flare" mean?  It means her Uveitis is NOT being controlled with the medicines she's on and anytime there is active inflammation, her eyes could be prone to damage.  Doctors are now advising that a child must be in a medically induced remission for two years before any weaning off meds can occur.  Every time there is a flare, even a minor one, that clock starts over.

So what is the plan to correct this pattern?  Her dad and I have concerns about her treatment plan.  Currently, she is on .8mls of Methotrexate taken orally on a weekly basis.  With each flare, we've been advised to use steroid drops once daily, then once the eyes are quiet at the follow up appt, as a result of the drops usage, we are advised to wean off of them. As soon as she is off them, she experiences a minor flare again.  Bad, bad pattern and a true remission only occurs without drops.  Drops just mask the symptoms.  As you know from my prior posts, steroid drops are not advised for long term use as they can cause cataracts and glaucoma. Lucianna currently has a cataract; luckily it's not affecting her vision.  Our current ophthalmologist feels that a  steroid drop a day is nothing to worry about.  Other doctors do not concur with that philosophy.  

So on January 20th, we are headed to see a new doctor and get his opinion on her treatment plan.  This doctor trained with Dr. Stephen Foster, one of the leading Uveitis doctors in the country.  I would like to hear what the new doctor believes should be our course of action.

Our only fear is adding more medicines that have a lot of side effects that are not easy for a parent to digest.  Side effects that include risks of Lymphoma, etc.  So we are at a crossroads.  Do we take our chances with drops and hope this disease burns itself out, or take a different path that may bring us into a medically induced remission?

Stay tuned as we navigate the next steps.  Thank you for thinking of us and remembering that even though she may "look ok"...she's not, she's simply medicated. 

Love,
Lucianna's proud Mama



Thursday, October 30, 2014

This Halloween, we want quiet!!!




Dear Friends and Family,

On October 15th, Lucianna was seen at the Wilmer Eye Institute at Johns Hopkins for a routine eye check up.  Unfortunately, her eyes were not completely quiet as we'd hoped they would be. She has some minor inflammation in her stubborn left eye.  The doctor opted to keep her Methotrexate on the current dose (which is the maximum for her size), and put her back on the Pred Forte steroid drops.  (~Sad face ~ drops are not the ideal here, but we have little options.)  The doctor wants to see her back in 2 months, so approximately mid-December.  I personally think this is a long time to wait for a recheck. 
That all said, Lucianna has been complaining of eye pain on and off for the last week and half.  After trying some lubricating allergy drops to see if that helped (in case it's just allergy eyes), we have decided to get her into a local ophthalmologist to see if anything beyond a few trace inflammation cells is occurring.  Our appt is tomorrow; ironically enough, it's also Halloween.  Lucianna is very excited to be "Anna from Frozen" for Halloween.  My friend Stephanie graciously offered to make her costume and an Elsa costume for Bella.  Lucianna's face beams every time she puts her costume on.   After her appt tomorrow, I will update this post as soon as I am able.  

Keep your fingers crossed for her.  We are hoping for a "quiet" Halloween, or at a minimum, no increase in inflammation since her last visit. :)

Love,
Lucianna's proud Mama

Wednesday, August 13, 2014

Next hurdle jumped...



Dear friends and family,

I meant to update our blog last Tuesday after the appt with Dr. B, but the week got away from me!  At Lucianna's eye check up last Tuesday, her left eye was clear.  So the increase in the Methotrexate seems to be working as well as the addition of steroid drops.  So we are told to wean the drops and discontinue after August 19th.  The trick here is weaning her off the drops and waiting to see if the Methotrexate can hold back the inflammation.  I am grateful that her eyes respond to the steroids and the Methotrexate is effective, as some children's eyes either aren't responsive or they can't tolerate the Methotrexate.  We are lucky on both accounts!

The next update will be around middle of October.  That will be the true test to see that the Methotrexate alone, can keep the inflammation at bay. 

Have a great rest of your summer!

Love,
Lucianna's Mom
(The picture above was at the hospital.  Not staged, not planned...but perfect.)

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!