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How 3 Letters Changed My Life: Henoch Schonlein Purpura (HSP)

Updated on September 3, 2014

The Symptoms

It's important to know that you can have 1 of the symptoms, or all of the symptoms, the disease manifests itself in many different ways. This is also what makes it so difficult to diagnose. My son had all of the symptoms at once, which made it easier for the doctors to make a diagnosis. As you age, the likelihood of having all symptoms at once greatly diminishes.

Common signs and symptoms of HSP include:

  • purpura, the raised, reddish purple rash (mostly in the legs and bottom)
  • joint pain and swelling (my son could not move any of his major joints)
  • stomach pain.(horrible cramping - not your typical stomach ache)
  • blood in the urine (pee) or other kidney problems.
  • fever
  • headache
  • nose bleeds

How It All Began

My son was 6 and in first grade. Happy, healthy, and relatively well adjusted, we never dreamed we would soon be dealing with a chronic illness. An avid soccer player (well as avid as you can be when you are six), he came home after a game complaining of knee and ankle pain. This was odd, but not out of the question considering how hard he had played. We told him to rest, put ice on his knee and ankle, and assumed all would be fine. We were wrong.

1 week later, my son was still complaining of a sore ankle, but nothing to worry us. We were more concerned about his sore throat and the strep cases going around his school. Knowing he had been a strep carrier in the past, we took him to the doctor. Again, nothing to worry about. No strep, test was negative.

I work in a sales and marketing job and had to leave town on business. I had no sooner landed and checked into my hotel when I got a call from my husband. They were back at the doctor, but things had changed. In less than a few hours from when I left, my son had started running a high fever and was extremely lethargic. Worried it might be the flu, my husband had rushed him to the doctor (Should I say that he NEVER wants to go to the doctor). What scared me was my husband saying "Jennifer, I'm scared. Something's not right."

Our pediatrician was stumped - Flu Test was negative and Strep Test was negative. Yet my son could barely move, was running a high fever, and did not want us to touch him. Our pediatrician decided to do blood work and sent my husband and son home.

I immediately booked it to the airport and home. Once I landed 2 hours later, my husband and son picked me up at the airport. I was extremely scared by what I saw. My usual happy, high energy little boy was in the backseat barely moving. He was extremely pale and could barely hold his head up. By the time we got home he was in tears complaining of stomach pains. I went to lift him out of the car and he started screaming at me telling me it hurt to touch him. Furthermore, he could no longer move. He literally could not bend his knees, elbows, ankles, wrists, nothing. I picked him up and ran him inside to lie him down on the couch.

Not even 30 minutes later, the rash came. Starting at his ankles was a bright red rash. I stood and watched in horror as my sons legs became covered in a bloody red rash. At this point, fear took over and my husband and I loaded him in the car and went to the emergency room. In route, we received a call from our pediatrician. Our son had strep. Nice to know, but we had bigger things to worry about at this point.

Upon checking in to the hospital ER, we were immediately given a room and a team of doctors. The on call pediatrician was stumped. He had never seen anything like this. Severe stomach cramps, red rash all over, high fever, and literally no joint movement at all. All he could offer was that it must be an allergic reaction to strep. He did offer some hope and said that his mentor and friend (a local pediatrician who had worked at Arkansas Children's Hospital) might know what to do and offered to give him a call.

An hour later, the friend (and now our family pysician) was there and we had a diagnosis. Henoch Schonlein Purpura, or HSP. Our life was forever changed with those 3 letters. It was an immune response (like an allergic reaction) to strep. One Google Search later and I was in tears. Why Me? What do I do now?

Our Experience

My son spent the next week in the ICU. He was on morphine for pain and was on IV antibiotics to fight the strep that was causing the HSP. He was also closely monitored for complications involving the bowels and kidneys.

I won't lie - this was the hardest week of my life.

My son did not look like my son. His head swelled into the shape of a football, he had a rash over the majority of his body, and talking and eating were difficult for him. He couldn't move much at all, and at times he would just lie in bed and cry. Finding ways to make him smile became my sole mission.

I spent most nights in a rocking chair next to his bed praying the pain he was feeling would go away and being angry that God had put us in this position. I was also anxious anytime the doctors would come in and check him for complications - hanging on every word - hoping to hear that his kidney function and bowel functions were still all good.

Luckily, we were able to go home after a little over a week.

Upon leaving the hospital, we were told to expect the symptoms to resolve on their own after 4-6 weeks and for the most part, this was the case. Our son slowly started to recover over the following weeks. He still had severe stomach pains and could eat very little so he was weak and could not move well. The joint stiffness started to subside, but the rash remained. He went back to school after 5 weeks, but only for half days. We found that any time he was on his feet for extended periods of time, the rash would re-appear and his feet and legs would swell.

We thought we were in the clear after 8 weeks. We were wrong.

What You Can't Find On Google

How to Cope:

You can find plenty of information online about what the medical condition of Henoch Schonlein Purpura is. What you can not find is how to deal with it, or what to expect. This is extremely concerning, especially after the initial diagnosis.

  • Prepare for the long haul. This is not the common cold or flu. It will take time.
  • Use social media to educate your friends and family on the illness and what to expect. Find a way to keep them informed and updated on your child's condition. You won't always feel like talking, so online sites are a great place to update everyone at once (avoiding countless phone calls). Carepages is my favorite. It allows you to post your story, pictures and updates via journal entries. It also provides a forum for friends to send you well wishes. https://www.carepages.com
  • Join online medical support communities. Some of my greatest support and information came from others dealing with the disease all over the world. One of my favorites was Inspire. http://www.inspire.com


The Complications

Have you ever heard the saying "You have a 99% chance of never...." That is basically the odds of getting HSP. OK - maybe those are not the exact odds (insert sarcasm here), but it is very rare. What is even rarer is having complications from HSP, but they can occur.

The 2 most common complications are as follows:

  • Kidney damage. The most serious complication of Henoch-Schonlein purpura is kidney damage. Occasionally the damage is severe enough that dialysis or a kidney transplant may be needed.
  • Bowel obstruction. In rare cases, Henoch-Schonlein purpura can cause intussusception — a condition in which a section of the bowel folds into itself like a telescope, which prevents matter from moving through the bowel.

Our son had been symptom free for about 2 weeks when the nose bleeds began. He had still been having stomach cramps in the mornings when he woke up, but the nose bleeds were new. We called our pediatrician and he said that it was common and not to worry. While this was worrisome, our definition of "normal" had changed so much that we decided to just deal with it. Then it happened. Our life changed again, and this was scarier than any ICU stay.

Our son woke up one morning and went to the restroom. Immediately, he started yelling for me and crying. He was peeing blood. Dark brown blood. Our worst fear had been confirmed. He had Kidney damage that was onset from the HSP.

The next few months were a whirlwind. We took several trips to Arkansas Children's Hospital to meet with a Pediatric Nephrologist. Our son was diagnosed with IGA Nephropathy. It would take time to determine if it was Acute (Short Term) or Chronic (Long Term). Since very few documented cases exist of children with HSP developing this disease, we were in uncharted territory. Scary. Very Scary.

My son started rounds of Steroid Treatment and Blood pressure medicines (Lisinopril). His body swelled from the steroids and he once again no longer looked like the boy I knew. We monitored his urine for protein and blood on a daily basis and saw little to no improvement. Brandon was leaking large amounts of protein and blood and his numbers were getting worse. This signaled that this was most likely a chronic case of the disease. Visions of kidney damage, failure, and dialysis kept me awake most nights.

I once again turned to my online communities and reached out to others with IGA Nephropathy to get ideas and advice from those living with the disease. What I learned would change my life. Giving the kidneys a chance to "rest" is key in allowing them to heal and repair. I started building "My Toolkit" and it became my lifeline.

We started daily supplements of fish oil, as well as a restricted diet (low sodium, gluten free, low animal protein). This, miraculously, started to help. Within a few months, his numbers were getting better. The doctors at Arkansas Children's Hospital were impressed with what they saw and encouraged us to continue to regimen of restricted diet and supplements plus the blood pressure medicine and steroids. Within a few months we were able to taper down the medicine and just continue on with the diet restrictions.

All in all, our HSP experience lasted a little over a year, and we still do not know if it will come back. It is like a "box" we have put on the shelf, but still stares at us every time we open the closet door. It can come back, and it most likely will some day.

What we learned though this experience was this:

  • Ask questions - LOTS of questions.
  • Seek answers - Not just on Page 1 of Google, research like you did in college.
  • Lean on your friends and don't be afraid to make new ones.
  • Open up - don't be afraid to trust.
  • Normal is never Normal....
  • Health is a gift - Do NOT take it for granted.
  • Use Social Media to drive awareness of your struggles, successes, and needs.
  • Surround yourselves with "partners" doctors that are willing to listen to your thoughts and answer your questions openly.
  • Give back - you never know who you might be helping (why I wrote this Hub)

Most importantly: Find something to smile about EVERY day. Even when you have to really look for it. It will pull you through even your darkest hours.

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      Teresa 11 months ago

      My daughter was diagnosed November 2015. Fortunately, it did not cause kidney damage. I just have a question: does the HSP re-appear each time your child has strep?

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      Matt 2 years ago

      My 12 year old son was diagnosed with HSP a week before Thanksgiving 2014 after being hospitalized due to stomach pains. He had a biopsy early January 2015 as his kidneys continued to spill protein and visible blood in his urine. He is currently on 60mg prednisone, 1000mg Cellcept, and 25mg hydrochlorothiazide daily to fight this. His biopsy showed no scarring at the time thankfully, but prednisone by itself failed to help improve the protein and blood spilling in his urine. There has been some improvements in protein spilling in the tests take two weeks after starting CellCept.

      My nephew passed away at age 24 of kidney failure (unrelated birth defects) in July 2014, so my anxiety over what my son is going through is almost overwhelming.

      It has been difficult shifting from hearing that HSP usually resolves itself in 4-6 weeks to now looking at this as a possible lifelong kidney condition.

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      jamie 3 years ago

      Thank you for writing this. My daughter is 10, and she was diagnosed in April with HSP. She started with strep, and we thought the rash was part of the strep. Her ankles were hurting, but she had just tried on her easter shoes and tripped a little, and thought it was her clumsiness from tripping that made them hurt. I left work early that night to take her in to the Dr, and that's when we got the news. I was a lot like you, I had not heard of this, I knew nothing about it. Fast forward, she had a biopsy 2 days before her 10th Birthday and we found out she also has IgA nephropathy. She is doing a lot better, but we still have some issues. She is on lisinopril and methophenolate. Hopefully she will continue to get better. This is a horrible thing for these kids, and adults, to have to deal with.