Early October 2015, my 21 month old son, Jagger, wasn't feeling well. We snuggled a lot and I tried to keep him comfortable while his body fought the virus I thought he had. Within a few days little sores began to appear on his body. They were growing at an alarming rate so we took him to an urgent care clinic. The doctor assumed he had a bacterial infection, prescribed an oral and topical antibiotic and sent us home.
While waiting for the medication to take effect, I kept him home and resting as much as possible. I had to make a trip to Costco and covered the sore on his cheek with a bandaid worried about what people would think. Over the next few days his sores exploded.
Watching in horror I called the lab everyday to get a confirmation on the infection. When they finally had the results I was informed it was NOT in fact a bacterial infection. I literally yelled into the phone "WHAT!? He is even WORSE now!" They told me to get him to the hospital immediately. We were told to go to our family practitioner first. He took one look at him and said "this is necrotic, the flesh is dying. Is it a spider bite!?" I said, "Doctor, he has them all over his body." He told me to get him to Children's Mercy immediately. When we got there the staff freaked out. New doctors kept coming in to examine him because no one had ever seen this before. The final doctor we saw was worried he had a blood infection. She started him on some meds and transferred him via ambulance to the downtown location where they had an ICU.
Over the next few days we saw every specialist at Children's Mercy while our child continued to deteriorate before our eyes. No one could tell us anything. Jagger stopped eating and drinking due to sores in his mouth, he couldn't sleep and he cried in agony constantly.
He had biopsies and cultures taken of the sores, constant bloodwork, a sonogram of his cheek making sure the sore on the inside of his mouth and the one on his cheek didn't go all the way through requiring surgery and skin grafting, an X-ray of his toe making sure the sore didn't go all the way to the bone, an echo cardiogram making sure bacteria was not in his heart and tests to rule out HIV, leukemia and other malignancies.
My husband and I took turns sleeping at the hospital. It was always a relief watching the sun rise. We weren't sleeping anyway with Jagger constantly crying out and nurses checking his vitals throughout the night.
We tried everything we could to get him to eat. To play. To show some sign of life.
Every breath was precious. Every bite and sip of water. Every time he closed his eyes and appeared to be at peace.
We were constantly tending to his open sores. Trying to keep them clean, moist, covered, uncovered, free of infection. We wondered if they'd ever stop.
After 7 days of constant poking and prodding and procedures, everyone wanting a piece, literally, of my son we said enough. The staff was doing everything they could to help him but my baby was under so much stress, so much anxiety and in so much pain we had to give him a break and time to rest. He would hide under his blanket whenever a doctor or nurse would come into his room. It was his safe place. A way to escape I guess.
Finally, the rheumatologist walked through his door. She told us with everything else being ruled out, they believed Jagger had an autoimmune disease. That his body was attacking itself. She diagnosed him with Behcet's disease and started him on steroids to reduce his severe inflammation, both inside and out. After several days his pain was under enough control he started to eat and drink again and was discharged. After an 11 day hospitalization.When we drove away I said "we're never going back there!" I believed Jagger would heal once he was home. In his own bed, with his family, where he was comfortable and not afraid of what was going to happen to him the next time someone walked through the door. I believed my love was enough to fix him. I was in serious denial that this condition was long term
Sores continued to come. He continued to feel awful. His days were spent laying on the couch, drooling because he couldn't swallow, not eating or drinking, and never, ever sleeping. For several weeks I let all (ALL) the doctors calls go to voicemail. My head was swimming from everything we had been through and I didn't want to need them anymore. In my mind, they hadn't helped my baby anyway. And I received so many calls every day, everyone wanted to see him and follow up and do more tests. His immune system was destroyed from all of the drugs that had been pumped into his body, his open sores threatened infection and we were purposefully suppressing his immune response. There was no way I was taking him into a waiting room full of other sick children.
Eventually I admitted to myself that we still did need these doctors. Our little boy was still very very sick. And I was scared. I decided that we would see his dermatologist and his rheumatologist and that the others could wait.
Sadly, after several weeks of healing, Jagger's largest sores reopened. And he continued to get massive mouth ulcers. He had lost a total of 10 pounds. About a third of his body weight. And we hadn't slept for months.
Jagger was admitted to the hospital several more times. He's had a colonoscopy and endoscopy to rule out inflammatory bowel. He was treated with steroids but they only acted as a temporary bandaid fix to the craziness that was going on inside his body.
The days were long and dark. Most of the time I felt like I was losing my mind watching my child writhe in pain or sit like a zombie unable to be present in his own life. He was missing everything…and he knew it.
Every so often we'd get a good day and felt like we were walking on sunshine. Easter Sunday 2016 was one of those days. And then he'd dip way down again.
Finally his rheumatologist said it was time to try something else. He wasn't getting better. He needed something more powerful than the steroids and with less side effects. Our options were a monthly infusion of a drug called Remicade or giving him weekly injections at home that felt like fire in his veins. We chose the infusions.
It took us several months to settle in, get it right and for everything to take effect. He had to go every 2 weeks for a while and he's had to go in for pulses of steroids when he couldn't make it to his next infusion.
It's been 16 months since Jagger first showed signs of illness and he's finally in a good place. He can make it to his infusions without any trouble. He's put his weight plus some back on. He still gets ulcers in his mouth from time to time but now they stay under control. We still have to be so careful with his immune system. The meds hold it off but his body is still constantly trying to attack itself so we do everything we can to build his immune system up naturally and keep him free of infection and viruses. The hope is that after enough infusions he will go into remission so we can wean him off of them. We really don't know what the future holds for him. We don't know long term side effects of this drug. We don't even know if Behcet's is really what he has. But this is where we are today. And today is all we have.
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