Thursday, September 17, 2015

We had a good run....

Dear Friends and family,

Well we had a good run, but unfortunately, its over.  In July, we discovered inflammation in Lucianna's left eye again and this past week we learned it's not being controlled like it should be with the addition of drops.  The only thing I am hopeful for is that she's growing and with growth, dosing must increase.  Perhaps she's outgrown her previous dose.  <fingers crossed>  We go back in early October to see if the steroid drops are helping and the increase in Methotrexate has helped.  We just found out that her liver counts on her lab work is all normal, so we are approved to increase the methotrexate starting tomorrow. Very happy about that.

We also had another blow in learning that Bella has a nephrotic syndrome that is yet to be definitively diagnosed.  In a nutshell, she has kidney disease.  We don't know which one but we begin treatment in early October.  Our doctor made it clear that her response to 4-12 week course of steroids will be paramount in knowing if she has a treatable disease.  Let me explain "treatable" -   "can be controlled, but not cured.  Relapsing is common and should be expected in many children."  If we don't treat Bella, it is certain that her kidneys will give out from working overtime to deal with the protein in her urine. So here I sit, trying not to think about the worse case scenario but worried for BOTH of my kids.  It doesn't seem fair but we will forge on.

In early July, my father died suddenly.  He was a terrific grandparent, affectionately called, "Papa".  I don't think a day goes by that you don't think of the person you lost. We are very happy that Mom has now moved in with us.  She has been nothing but awesome in helping us with the girls and doing things around the house.  I have really enjoyed her company and look forward to many years of friendship and reconnecting with her in a new and wonderful way.  It has not been an easy 3 months for sure, but we will get through it...we always do.  Family support has been incredible during all this heartbreak, and for that, I am very thankful.

I hope our October report is a positive one.  

Lucianna & Bella's proud Mama

Thursday, May 28, 2015

Some of the hardest things to do in life, bring the biggest results!

Dear friends and family,

There is nothing that brings me more joy than to be writing this post about Lucianna.  Yesterday, at Lucianna's eye appointment, we received wonderful news.  (In March, we changed the administration of the Methotrexate from an oral liquid to an injection.) Though the weekly injection has been difficult on both Mommy and Lucianna, it has proved to increase the potency of the drug resulting in clear eyes at yesterdays visit!  She hasn't been on steroid drops for two weeks, so the Methotrexate alone is keeping her eyes quiet. Big, huge, deal!  We love our new ophthalmologist who listens to us and cares about Lucianna getting better.

We are incredibly grateful that this day has come but we understand fully that Uveitis is a roller coaster with lots of ups and downs.  So today, we are cautiously optimistic and will celebrate all victories, big and small!

An update on Bella:  On a routine urinalysis, it was discovered that Bella has been leaking protein into her urine.  This is called Nephritis.  She had a renal biopsy on April 30th to try to learn what was causing this condition, but they only found "minor inflammation",  yet no underlying cause for this condition.  Today, Daddy has her at the nephrologist to learn how we move forward with this diagnosis.  Leaking protein, in a nutshell, means that your kidneys aren't doing their job at filtering properly.  Allowing this to persist could cause long term kidney damage or failure.  So we need to figure out a plan, or a "watch & wait" tactic and monitor her.  Getting the news of having second child with health issues was not what we wanted to hear, but with all that we've dealt with with Lucianna, we got our game face on, and prepared ourselves for battle! 

Lucianna and Bella's proud Mama

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 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!

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. 

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. :)

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!

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