Tommy's Story

My 3 year old son Tommy was diagnosed with Henoch-Schönlein Purpura in April of 2011. I just went to take him to the playground one day to find that he took his sandals off in the car. When I went to put the sandals back on he started screaming in pain. I instantly searched his feet for blisters but there was none. I could barely brush his toes and bottom of his feet and he would cry in pain. The only thing I noticed was in between his big toe was a small blue mark. He really wanted to play anyway so I took him out of the car but he could hardly walk. He limped around and then within 30minutes of being there his ankles were swelling. I took him home but desperately wanted to take him to the emergency room, but I had a one month old baby at the time and couldn't lose the sleep. By the end of the night both of his feet were swollen and had bruises. We put him to bed with ice packs.

The next morning he woke up and walked in my room announcing, "I did it mommy, I can walk". I thought that since the swelling was gone and he seemed fine that I didn't call the doctor. Later on that night I deeply regretted not calling. He was throwing up, had a lesion on his thigh, both feet were swollen again with bruises. I ended up taking him to his Dr that morning and there the doctor discovered his new lesion on the bottom of his back. His Doctor immediately informed me that he had acute Henoch-Schönlein Purpura. He wanted my son checked into the hospital.

Once we arrived at the emergency room the doctors there refused to check him. They gave him IV fluids and drew his blood. Printed me out a form on HSP and said, "This will get worse before it gets better".
BOY did I have NO IDEA what that meant until the torturing two weeks ahead of us. My son would wake in the morning feeling 50% but after twelve in the afternoon thing would always go down hill. We were only allowed to give him a dose of Motrin every 6 hours which only worked for ONE hour. My son's knees, feet, hands, arms and fingers were always swollen. I would rub him down in Vicks vapor rub and put warm rags on his swelling joints. He wouldn't eat and he hardly ever drank anything. He went over a week without having a bowel movement.

His grandparents had to come and stay with us because Tommy would scream all night in pain and I had to tend the newborn baby in our house. Tommy couldnt walk. We would slide him around on a crib mattress throughout the house. It got to a point where he couldnt stand to be touched, therefore couldnt carry him to the potty so we would have to bring him a urinal to pee in. My husband and I
DREADED carrying him to his bed at night. It took two of us to carry him because we tried elevating his feet up in the air to help with the pain. He screamed and cried hysterically every time. Then it would take him an hour to get over the pain. We always gave him a dose of Benadryl to help him rest at night and the Motrin. Nothing really helped him rest at night though. I would go outside at night and cry, fight throwing up from all the stress and trauma, and fight off anger of just not being fair and why did this happen???

It broke my heart to think about the other children out there suffering and the poor parents who didn't have support. I felt so alone. Tommy had a lot of trips to the ER but none was helpful. The doctors seemed so emotionless and just said "I'm sorry but there is nothing we can do". I got so tired of hearing that. I also just have to add that my newborn child at the time was getting tested for Cystic Fybrosis and Herchsprungs Disease we felt attacked in our house. Thankfully my baby is fine and healthy now but we had so much going on at once. My mother and husband had to carry Tommy out one night at 1am because his genitals swelled up so big you couldn't tell he was a boy. He was in so much pain that he screamed for us to get out of his room. he trembled in so much agony. They had to carry Tommy out of the house on the baby's crib mattress and lay him in the very back of the SUV. We had to cut his underwear off of him.

Once again we were told to go home and couldn't use anything else to manage his pain. The whole time I was fearful that the swelling would reach my sons face. One evening his Lip started to swell and I prayed all night that when I woke up please don't let my sons face be swollen shut. That night my husband and I couldn't bear to carry him to bed so we allowed him to sleep on the couch. My grandfather slept in the recliner that night to watch over Tommy. I listened to Tommy all night cry and plead for his daddy. My husband is in nursing school and had started clinicals so my family and I tried our best not to discourage him. That morning my grandmother woke me up to tell me that the unthinkable had happened. My poor baby's face was swollen shut. You couldn't recognize him. His eyes were swollen shut that they looked stretched out and as big as a golf ball. His lips were huge, his nose was stretched out. His eyes were the only thing he had going for him because he couldn't play but he could watch TV. Oh, it hurt me so bad and pains me to remember his face. He was still swollen everywhere else too.

We loaded him up on the crib mattress in the back of the SUV. Listened to him cry all the way to the ER. This time I refused to go home. I was headstrong on them giving him pain relief and I wanted the steroid treatments. They gave him a morphine drip, drew blood and gave him fluids. We finally got a room to stay and my mother stayed all 3 nights with him. They finally gave him cortisone steroid treatments. He was on the treatment for a long time and every time we came close to weaning him off more symptoms would pop up and we would have to start over. After the third time of doing this his specialist just stopped the treatment all together.

We prayed hard for the Lord to heal my son and as of October 2011 he has been free of HSP symptoms. Now I have so much passion to raise awareness for this illness. I found a wonderful website everyone should look at http://www.vasculitisfoundation.org