Our family has had an adventure for the past month. It's an adventure we wish never to take again. We had an adventure with Henoch-Schönlein Purpura (HSP).
About a month ago, our 14-year-old son, Ryan, started having severe stomach pain after taking a dose of Amoxicillin. He had battled chronic sore throats all winter and the hope was to clear things up with an antibiotic.
The next day the pain was so intense that we had him in the emergency room. Prognosis? Stomach ache. *Send him home*
This went on for a week - take him to the E.R., be told he just has a belly ache, then, *Send him home* We took him to the pediatrician who put him through a battery of tests that included ultrasounds and an Upper G.I. They found blood and protein in the urine but still nothing much was said.
After the week was up, we had a new development. A ridiculous rash developed all over his body. The brunt of it was on his legs, though it was everywhere. We took him to another emergency department, this one at a larger hospital 1 1/2 miles away. The diagnosis this time? HSP.
Since that diagnosis, Ryan has had three hospital stays, two of them in a very large children's hospital in our state. This hospital is reported to be one of the best in the country. I'm inclined to agree. In fact, as I write this, we are in his hospital room. Ryan is scheduled to go home in the morning.
HSP is an autoimmune disease that typically shows up after an upper respiratory illness. More times than not, a rash resembling hives occurs along with horrible stomach pain. I'm talking pain so bad it is a 10 out 10. Along with the rash and stomach pain comes joint pain - true arthritis. It is not uncommon to have blood in the urine and the stool. Capillaries inflame and burst in the skin and the internal organs. Ryan's stomach pain was caused by inflammation in the upper bowel. A child is born with HSP antibodies. It stays dormant until something "triggers" it and makes it active in the body. Nobody knows for sure what triggers it, though there are more cases of it in the winter and early spring. It seems to follow illnesses in many children.
The real dangers with HSP are what it can do to the kidneys and the intestines. Ryan's kidneys were affected so the nephrologist on call last week did a biospsy to assess what damage might already be done. Since the symptoms of HSP and Lupus are pretty much the same, the biopsy was important in that through it she was able to rule out Lupus. While Ryan's kidneys don't appear to be damaged too badly, they could shut down later and go into complete kidney failure. Because of that danger, the nephrologist will be keeping an eye on him for the next couple of years. Our first appointment with her is in five weeks.
Ryan's case was not all that typical at first. It still isn't. He had the stomach pain for a week before the rash appeared. Every doctor we saw has said the same thing, "This is the worst case of HSP we have ever seen." That is a bit frightning.
It has been a month since HSP first reared its ugly head. Ryan is not completely over the disease - it has to run its course and has not completed that course yet. The team of doctors here agree, however, that he should be over the hump and be on the way to recovery. There's no way to know for sure whether or not he'll have another flare (relapse). I'm praying not.
The treatment for HSP is limited. There is no cure. The inflammation can be controlled with different medications. Sometimes anti-inflammatory drugs such as Naproxen or Ibuprofen work well. Ryan started out with Naproxen. It worked for a few days until he relapsed with worse stomach pain and rash. He also began bleeding internally so badly that he was ambulanced to the children's hospital 3 1/2 hours from home. The medication was severely harming his kidneys.
Steroids are another option to reduce inflammation. That is what he is taking now, along with muscle relaxers and Tylenol. The pain, as of tonight, is a 1 out of 10. That is so much better!
As a mom who has had to watch her child suffer with terrible pain for the past month, I can tell you that this is one terrible disease. It typically affects children aged 15 and younger, but can also affect adults. Watching a child suffer and knowing you can virtually do nothing to alleviate that pain is awful. I cannot imagine how I could have handled it had one of my kids had this at a younger age.
One thing I do know is that once HSP is triggered, it lasts for a month or two then just simply goes away. Almost always it stays away for the rest of that child's life.
Prayer has made all of the difference in our lives. People from all over have told us that they have been praying for Ryan and for our family. We are leaning on the Lord for help to get us through all of this. My husband and I have had to miss a lot of work. Our income reflects that. We have had 9 ER visits in the last month along with 3 hospital stays of an average of 3 days at a time. Ryan has kept track of his "pokes" with needles: 39
My conclusion is this: GOD IS GOOD. He will see us through this.