Grace’s Story

June 2009, Grace complained of her ankle hurting. She had danced in her dance recital on Saturday morning then played outside in the yard for a few hours that afternoon....I thought maybe she had twisted it or something. The next day she woke up and was still complaining of her ankle and I also noticed a few small spots on her legs. I thought maybe it was bug bites or an allergic reaction to being outside. Monday morning she woke up and her ankle was visibly swollen, more spots, and couldn't bear weight well on that ankle. I took off work and headed to the pediactrician's office with her. At that point I thought maybe a spider had bitten her or something. We got there and the doctor looked at her and almost immediately told me to take her to a children's specialty hospital.

The office was right next door to our area hospital but she wanted her seen by a pediatric hospital. She said the rash was a form of vasculitis and was blood pooling at the surface of her skin, that could indicate meningitis. My heart dropped, I tried to stay calm because I didn't want to upset Grace. We drove home and I called my husband and my mom and told them they had to come get us and drive us to Dupont Childrens Hospital because I was too upset to drive. By the time we got there the rash had was all over both legs, and her behind. We went in and they checked her out, at that point she had a low grade temperature (100), the rash, and one swollen ankle. They determined it wasn't was HSP. Grace had had a very slight cold a few days before and the doctors seemed to think that triggered the HSP. HSP is basically your immune system overreacting to something....whether it be a virus, an infection, allergies, etc. We were told to take her home and keep her as comfortable as possible, but that it would get worse before it got better....and to bring her back if the swelling got worse or if she complained of any stomach pain.

She got steadily worse all day and at about midnight both ankles and knees were swollen to the point that she couldn't stand and she was doubled over in stomach pain. We rushed her back to Dupont. She was given tylenol with codeine to control the pain and they sent us back home. Over the next 4 weeks she was in and out of doctors offices just about every day. The HSP caused almost every joint in her body to swell...she didn't walk for about 3 weeks, we had to carry her everywhere. Her wrists hurt so bad she couldn't turn the pages in a book or open a water bottle. Even her face was swollen. She also had terrible stomach pain, ....she would literally double over in pain and cry like I have never heard her cry. She couldn't sleep at night from her joints hurting, and would moan in her sleep. For the first few weeks her stomach pain was so bad she would throw up, and finally we put her on Zofran to stop the vomiting. She lost 5 pounds the first week. The rash spread all over, to the point that it looked like large red bruises just covering her legs and arms. The only place she didn't get the rash was her face. She also had a terrible hacking cough. I had to take a leave from work for the summer to take care of her and run her to all the doctor's appointments. She was seeing a pediatric specialist in Hershey, PA, and he was a huge help. We were basically told to just wait it out, that the steroid treatment was very risky and could cause other problems.

Their main worry was kidney involvement, because the HSP can cause kidney problems and in some cases kidney failure. Eventually things gradually got better. She is 100% back to normal now and is in kindergarden...she just has a urine test once a month to monitor her kidneys. She has had a few flareups, she got some mosquito bites that caused some joint pain and the rash to pop back up....and then her allergies hit her and again the joint pain and rash came back. But both times it was not near as severe as what she went through this summer. It is important that we keep her healthy, as her getting sick is what triggers the HSP to come back. We are told that after a year chances of reoccurrence are slim to none, and basically just to do everything we can to ensure she stays healthy. We avoid public places and I talked to her teacher about making sure she has her wash her hands and use hand sanitizer throughout the day. She also just got her H1N1 vaccination. That was one of the doctors main worries, that if she were to get H1N1 it would cause definite complications.

I still look her over head to toe every night to see if she has any signs of rash and I can't stop asking her if she feels OK….this definitely affected our family. We will never take our children's health for granted again, because things can go sooo wrong in the blink of an eye. I hug her really tight every night. I am glad she came through it with no lasting effects and my prayers go out to any family that has to deal with this condition.