Henoch-Schonlein Purpura

I am posting this only for the purposes of keeping a record of Reagan's recent illness.

In my recent post about the color run, I mentioned that Reagan was not quite herself during the race. She woke up that morning with a headache.  Reagan gets headaches with some regularity, so I did not think much of it, and it wasn't bad enough that she wanted to skip the race.  I thought she might be a little dehydrated, so I suggested lots of water and a little resting before the race at 10:00.    During the race, she seemed to be uncomfortable and not quite herself.    She hates to miss out on a good time though, and she will power through as much as possible.  When we got home, Reagan took a shower, and I noticed she did not come downstairs, but Karlie was supposed to come over later that afternoon and I thought Reagan was probably cleaning her room or planning their afternoon activities.  Tom went to check on Reagan and found her sleeping on her bedroom floor with only a towel wrapped around her.  She moved to her bed and stayed there all afternoon with a fever.  When Reagan gets sick, it almost always starts with a headache, and now the morning headache and everything else from the day was coming together.  I figured she had a virus.  (That was on Saturday, May 16)

Reagan's symptoms were headache, low fever, and a stomachache.  A few days into the virus, I learned that a friend's daughter had strep throat and that she had the same symptoms as Reagan. After all of these years as a mom, I had never heard that strep throat could be present with the key symptom being a stomachache.  Reagan did not have a sore throat!  On Wednesday, May 20 (her fifth day with symptoms), I decided it was time to see a doctor.  Reagan had a throat culture that confirmed strep throat and was given a prescription for amoxicillin.    She saw the doctor early enough that we were able to give her two doses that day.  Later that evening, Reagan had terrible stomach pain.  She was curled up in a ball on her bed.  I sat and watched her for a while, and she would fall asleep only to wake up in pain a few minutes later.  Earlier that day, Dr. Shreter had told me that sometimes the stomach pain from strep throat is so bad that people think it is appendicitis.  I figured it was just strep, but I was also afraid that it might be something worse.  Tom brought her to Charlton where she was given another throat culture and tested for a UTI.  Strep was confirmed and everything else was ruled out.  The doctor gave her a dose of Dicyclomine syrup and a prescription for the same to help with the stomach pain.  She came home from the hospital in great spirits and I thought that was the end of that.  That was also the last day she had a fever.  Reagan had a sore or bump under her lip that I thought was a fever blister or cold sore at that time.

I didn't even point it out to Dr. Shreter because I didn't think anything of it.

On Thursday, May 21, Reagan had her third dose of amoxicillin in the morning and went to Grandma Susan's house while I took Kate to the Audubon Society.  Reagan was doing well.  On the way to Grandma's house, I noticed a bump near Reagan's ankle that looked inflamed or irritated.

I asked her about it, and we both concluded it must have been a bug bite that she had scratched. Early that afternoon, Tom and Collin left for Washington, D.C.  We figured Reagan was on the mend.  She was feeling okay at that time, but as the day went on, her stomach pain returned.  Around 4:30 PM, I noticed a rash on Reagan's elbows and ankles.

I called the doctor and she thought it was an allergic reaction to the amoxicillin; she told me to stop that medication and called in a new prescription for azithromycin.  At 5:00 PM, Reagan started vomiting and new spots were appearing.  She was in pain and continued vomiting over the next two hours.  I called the doctor a little after 7:00 and she answered the phone!  When I told her what was happening, she had us come right in even though her office was technically closed.  She's great! Grandma Susan met us at Dr. Shreter's office and took Kate back to her house.  After looking at Reagan, Dr. Shreter thought she might have HSP, but a person she spoke with in infectious diseases claimed that HSP does not develop from strep throat (Dr. Shreter did research and called me later that evening to let me know that the infectious diseases person was wrong and a classic development of HSP occurs following strep throat).  Dr. Shreter decided Reagan should be seen in the ER, and off we went to Hasbro Children's with Grandpa Jim driving so that I could hold the vomit bowl.  Hasbro was incredibly busy and we sat in the waiting room for a long time.  Poor Reagan wanted a couch, but they were all taken.  After a while, we were finally seen.  Dr. Shreter had called with her opinion that it was HSP, and the ER doctors agreed. They took blood to rule out mono and lyme and I had the joy of helping Reagan get two urine samples to rule out a UTI.  It was a long night in the ER, but when we left there around 6:30 AM on Friday, Reagan seemed to be feeling much better.

Reagan and Kate spent some time at Grandma's that morning while I took a nap.  A few hours later, the girls came home and Reagan's pain returned.  I tried to manage it with Motrin, but I was worried because Reagan wouldn't eat and I figured that between the HSP, the Motrin, and the Azithromicin, her stomach pain had to be awful.  Reagan was vomiting regularly and I was mad at myself for not demanding IV fluids in the ER.  Reagan slept on one couch and Kate and I slept on the other that night.  I didn't really sleep though.  Reagan was vomiting about once an hour and she would cry out in pain about ten minutes before the vomit.  After she would vomit and get cleaned up, she would eventually fall back to sleep, and so would I, for a few minutes before it started all over again.  Her only break was around midnight when she felt good for about thirty minutes and watched a television show.  This was the hardest night for me both physically and mentally.  In addition to the toll that the pain and vomiting was taking on both of us, I read a lot about HSP and boy was I scared of all of the possibilities.

On Saturday, May 23, Reagan vomited at 1:00 AM, 2:15 AM, 5:00 AM, and 10:00 AM.  At that point, after talking to Dr. Shreter, we went back to Hasbro.  Our experience in the ER was much better; it was pretty much empty, and Reagan found one of those couches she had coveted the first time.  She wasn't on that couch long though because one of the nurses helped her onto a stretcher.  We went right back to a room and after a few minutes, IV fluids were started.  Reagan was so dehydrated that the nurse had a hard time finding a vein.  The vomiting continued, but the pain was lessened a bit once Reagan started receiving pain medication through the IV.  She could barely lift her head off the pillow, and she was so afraid of vomiting that she would cry if she couldn't find her vomit bucket immediately when she awoke.  It was heartbreaking.

X-rays were ordered and Reagan slept through the x-ray she could lie down for; she struggled through the x-ray she had to stand for. The x-rays looked good, and I was grateful for that.  Soon after, we were told that Reagan was being admitted and was heading to a room on the fifth floor. Poor Reagan cried, "that will be such a long walk" but was reassured that she would be rolled to her room on the stretcher.

Her face swelled up quite a bit and that made me nervous because swelling is a sign of kidney problems, but the nurses and doctors were confident that the swelling was due to the large amount of fluids she received.  Reagan pretty much slept that entire day unless someone was waking her up for something. She didn't like being woken up AT ALL.  I slept next to her in a hospital chair that night. Papa and Grandma visited her in the hospital, but she was so sick that she has no memory of them being there.

On Sunday, May 24, Reagan was feeling much better.  She wasn't vomiting, she finally ate for the first time since Thursday, and she wasn't in as much pain.

She didn't really like having that monitor on her finger the whole time, but she was excited that it looked like an E.T. finger.  Reagan did love that heating pad on her stomach though; it filled with water from a pump, and it felt nice on her stomach.

She was joking around with the nurses and liked playing games and watching movies on the screen in the room.  We ordered all of her meals from that screen too.

We saw Dr. Shreter and Dr. Kremsdorf (nephrologist) that day.  Reagan was given clindamycin to make sure that the strep throat was completely gone, and this was her first time swallowing a pill (we were told that the liquid version smells and tastes disgusting). Tom returned from Washington, D.C., and Reagan was so excited to see him.  She was discharged that evening. Reagan slept when she got home and continued taking Motrin for pain.  She had no interest in eating or drinking anything.

On Monday, May 25, Reagan slept most of the day.  We were worried about her fluid intake and talked about the possibilitiy of a nurse coming to the house to give her IV fluids at home.  Tom and I also hoped that Reagan would be able to sit up for a while at Tyler's graduation party on June 6th. From what we had read, HSP can last several weeks or even months.  I made homemade chicken soup, and we were thrilled to see her eat some that evening.  I was happy that her spots were healing, and she didn't have any new spots.

On Tuesday, May 26, I spoke with the principal at North and informed her of Reagan's illness (I had already been in contact with her teacher over the last week); I told Mrs. Sabra that I wasn't certain Reagan would be returning to school this year.  When Reagan woke up later, however, she felt well enough to take a bath and I combed out the rats' nest on the back of her head.  Family and friends were sending gifts, flowers, and balloons, and she was definitely happy about that.  She did well that day and even insisted on doing a little homework.

On Wednesday, May 27, we saw Dr. Shreter and I expressed my shock over the fact that Reagan could barely get out of bed on Monday, and two days later she seemed to be just fine!

Reagan returned to her class on Monday, June 1 after missing two weeks of school.  She seems perfectly fine now!!!  She only has a few spots around her ankles now and she hasn't had any stomach pain since May 26.  Her blood pressure and urine will be tested regularly over the next year to make sure that her kidneys have not been affected by the HSP.  The first test on May 27 came back normal. The nephrologist told us that once a person has had HSP, there is a risk of recurrence.  I'm sure I will be on edge with every stomach pain or fever, but I am hoping that because this was a mild case (the word mild seems ridiculous because she was so sick, but it really can be much, much worse) she will stay healthy and we will never hear about HSP again!