Lucas Grencer

 

My son's name is Lucas Grencer and he has Stills disease.  He is 14 years old.  I am writting this for him as he is too weak and sick right now to write after just being released from the hospital yesterday after his second severe flare-up.


He was just diagnosed this fall.  We had just moved to NY from DE in the beginning of the summer.  Towards the middle of summer, we noticed a decrease in appetite, weight loss, and general fatigue, but he never complained. 
Towards the end of August, the rash began.  It started on his upper thighs, arms and trunk.  It didn't itch, but at this time, the sore throats started and joint pains.  He was at his family doctor about 6 times, everytime having a strept culture that would come back negative, unexplained fever, and a few pounds lighter at each visit.  They couldn't figure out what was wrong with
him, and explained he might have a virus that would eventually work itself out.  On the 7th visit, they finally decided to do some bloodwork.  The doctor called me that night and said his wbc was quite high, and if he still wasn't feeling well in the moring, bring him back in.  Late that evening, his fever spiked to 104, couldn't raise his head off the pillow, and was in tremendous pain.  His doctor advised me over the phone to get him to the er. 

There, they did bloodwork, and said his wbc was at 27,000 and told me they thought he might have an infection in the sac around the heart...pericarditis.  He was admitted and starteted on an i.v. of antibiotics.  He was seen by all kinds of doctors, including infectious disease, which was ruled out.  After 5 days here at our local hospital seeing him get gradually worse with the fevers, severe joint pain in every joint, chills, more weight loss, we took him to Dupont Hospital for Children in DE,
where he was finally diagnosed with Stills Disease.  

They first had to do a bone marrow biopsy to rule out leukemia as it is very dangerous to start steriod treatment if it had been.  They started him on a i.v. drip of prednisone which had a remarkable effect.  He left there a few days later taking 60 mg of prednisone and Ibiprophen for pain.  He started seeing a doctor here, and was doing fine gradually being tapered down from the predisone and adding methotrexate and folic acid.  He has gained 75 pounds in 5 months, and has had the terrible side effects of large purple stretch marks covering most of his body.  He had just gotten down to 10 mg. of prednisone and 20 mgs of methotrexate, when he developed another terrible flare about a month ago. 

 In addition of his Stills, he was diagnosed with hytertension when he was 12 years old, which has been hard to control even with all the drugs he has been on for that over the years because the prednisone tends to raise your blood pressure. 
His sed rate last week was 95 and his wbc was at 29,000, so was given 3,000 mg of prednisone i.v. over the couse of 4 days, and given his methotrexate by shot this time which was increased to 25 mg.  On his last day of treatment (this last Friday), he experienced severe nausua and a feeling like his head
"exploded" late at night.  He was rushed to the er here, where they found his blood pressure to be 175/107, heart rate at only 42, severe vomiting, and a vice like pain in his head.  They thought he might have had a bleed in the brain, which was ruled out by a cat scan.  He was admitted and the next day
given a spinal tap to rule out meningitis.  They did 2 more cat scans, one with contrast this time and they still were negative.  He was still very sick, heart rate still in the low 40's and pain still in the head.  He was taken by ambulance to a specialty hospital in upstate NY, where he was seen by numerous specialistists.  The neurologist there saw changes in the pressure in his eyes, and recommended he be seen by an opthomologist there. 
Well, to summerize, we left there with little explaination as to what might have happened to cause all of this except to say that maybe it was the large amout of steriods in such a short amount of time.  He's back to 20 mg of prednisone per day and weekly shots of 25 mg of methotrexate. 

As his parents, we are still very concerned about all the effects of these drugs over the course of his young years.  We realize that he needs the prednisone right now and the methotexate, but hope new treatments will develope with less severe side effects.  He's been home schooled by the school he was to attend here in September and had just gotten to start attending and trying to meet friends here in this new area when this latest
flare hit.  We are worrried about this whole disease effecting him now socially as well as physically.  He's had a wonderful attitude so far, but wonder how much more pain and social withdrawl a normally active and social 14 year old can take. 
I am meeting with his guidance counselor tomorrow to see how we can get him to successfully complete the 8th grade. 
Hopefully, he will be able to come out of this flare he's currently in, get regulated on the right doses of medications, and get back to a somewhat normal routine and life by the summer. 
Jill Grencer

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