Diagnosis Day

January 27, 2012

Today began with an appointment at 9 a.m. at Texas Children’s Hospital Clinical Care Center with Dr. Rosillo and Dr. Marietta deGuzman in Rheumatology.  Well, it actually started earlier with a cup of coffee but we’ll skip all that.  Hope hopped up on the exam table, as she is so used to doing, and began playing something on daddy’s IPad.  Dr. Rosillo came in and got an update on how Hope’s been feeling since our last visit a month ago.  I’ve noticed things like her not being able to press the button on a perfume or spray bottle, open our front door; things that she needs to do with strength in her hands.  Her play activity has also decreased as the pain in her toe and foot joints increased.  After a preliminary explanation about diagnosis and medication options, Dr. deGuzman arrived.  What sweet ladies!  They are both awesome Dr.’s.  Not only do I feel they are very competent in their field, they are compassionate and take time to explain.  Dr. Rosillo is from Mexico or Brazil (don’t quote me on that) and has quite an accent.  And Dr. deGuzman has a very heavy accent from (???) and is somewhat hard to understand as well, but they are so very kind!  I wouldn’t want any other Dr’s. 🙂

Dr. deGuzman began explaining that Hope has plenty of  clinical symptoms (and in her history) to diagnose Pediatric Sarcoidosis.  To say that she absolutely has it we would need a biopsy of the granulomas in her lungs, which is very invasive, or ones that have formed in her hands, feet or elbows.  At this point we are going to move forward with immediate treatment to slow the progression of the disease.  We would have begun an infusion today but that department was completely booked.  But now I’m getting ahead of myself.

Her CT scan showed granulomas in her lungs have not grown in the last 2 years.  Since she has not been on any kind of treatment plan this is very good news!  The fact that her lungs have not been greatly affected thus far is encouraging.  Her abdominal ultrasound did not show any unusual activity of granulomous formation which is also very encouraging!  She does continue to have nephrocalcinosis (calcium deposits in the kidney’s) but it has not gotten any worse in the last 1 1/2 years.  This is likely due to keeping her hypercalcemia (high calcium in blood stream) within normal limits by her calcitonin injections.  However, with children who are diagnosed with this disease, they usually prescribe an NSAID first, like Naproxyn.  We tried Hope on Naproxyn before Christmas and it caused irritation in her kidneys which caused blood in her urine.  So, we are unable to use non-steroidal anti-inflammatory drugs such as these.

On Monday we will go back to TCH for an IV-infusion of steroids called Solumedrol.  These infusions should take approximately an hour and we’ll do this once a week for the next 4 weeks.  I was told to buy her some sour candies to suck during this time to keep the nasty taste out of her mouth.  She will also begin a very low daily dose of steroids in pill form (Prednisone) and a dose of Humira every 14 days for a month.  The Humira will be injected by me every 14 days with something that looks like an Epi-pen.  Darrel and Hope went into the waiting room after our appointment so I could make other appointments and get ‘trained’ to give this new injection.  When the nurse brought the ‘pen’ and showed me how it worked I started fanning my face with papers.  They asked me if I was hot and I said, “No, just trying not to cry!”  The LAST thing I want to do is give Hope more injections.  Ahhhhh! [Charlie Brown style when Lucy pulls that football away from him]   I need prayer.  Hope needs lots of prayer (I was made aware that this medication stings, like her MiaCalcin, and I have to hold the needle in 10-15 seconds while it pumps).  She is NOT going to be a happy camper.  Again, very thankful this is only every 14 days and not every day.  Since Humira suppresses the immune system we are going to be prayerful and careful about infections, bacterial and viral.  She cannot be a hermit but we will be praying for wisdom in keeping her healthy.

In a month we’ll have a follow-up appointment to see if the medications are effective.  She will continue her MiaCalcin injections every 12 hours during this time…BUT…our prayer is that, if this disease gets controlled, that her hypercalcemia will desist and she will get to stop taking these daily injections.  I have NOT told her of this possibility, as I believe the devastation of it not happening would be very great.  I can hardly ponder the thought of it myself.  There is hope.  We will need to take blood for labs during this time so our endocrine Dr. can see if there are changes occurring in her blood calcium levels.

Right now our concerns are getting the inflammation down; back, all knuckle and hand joints, wrists, elbows, hips, ankles, feet and toes.  These are the main points that are causing her such pain.  Sarcoidosis causes granulomas [medical term for tiny collection of immune cells known as macrophages.  These form when the immune system attempts to wall off substances it perceives as foreign but is unable to eliminate.  It’s a special type of inflammation.] all throughout organs in the body including but not limited to the eyes, heart, liver, kidney’s, and lungs.  She’s had them form in her hands, feet, elbows and lungs.  We are praying these new medications will eliminate them and keep new ones from forming.

Another challenge will be to keep her active.  We’ve learned taking steroids causes the patient to be very hungry and usually gains weight, not to mention the swelling or ‘puffiness’ that naturally occurs.  Praying that the Lord will help all of us through this time.  The Dr. said taking steroids can make one very moody.  I wonder if it’s from the med’s or from people saying they shouldn’t eat so much! ha  Please pray for her specifically in this area as well… we want to feed her healthy snacks, comfort her and point her to Christ.

There’s so much more I’ve left out from the day but it’s late and time for me to rest.

I go to sleep very thankful.  I’m thankful God has let us have precious Hope for 3 more years (since initial flare in 2008); thankful for medications and Dr.’s, thankful for friends who pray, thankful for a Godly husband and children; thankful for funny movies and ice cream; and thankful to  Jesus for unimaginable suffering for the love of His people.

Holy God in love became

Perfect Man to bear my blame

On the cross He took my sin

By His death I live again!

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One Response to “Diagnosis Day”

  1. Tiffany said

    So thankful you have a diagnosis! I will be praying for this new phase of treatment and those yucky shots :(. And praying for the effect of steroids, and grace for you to care for her, and so much more. So thankful for all that God has done thus far and look forward to what he has for you in the future. Love you!

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