Dealing with Henoch-Schonlein Purpura (HSP)

A little over 3 weeks ago my 6 year old little man started complaining about an ache in his groin area.  Because he is known for taking lots of spills on the playground I wasn't too alarmed.  I took a peek and found a very alarming site. His testicles were beet red and had grown to about twice their normal size.  Coincidentally the air conditioning was out at his school on this day and it was overly hot in the school.  I thought maybe it was some kind of a heat rash.  I asked him if he fell on the playground or if someone kicked him and he said no on both counts.  He wasn't complaining too much that it hurt.  Still I was worried.

I sent him to bed and decided that if they are the same way in the morning I would take him over to his doctor to check it out.  Unfortunately nothing changed overnight so off to the doctor we went.  When the doctor looked at it she did not suspect anything unusual but that maybe he did get hit and this was normal swelling and bruising.  After completing an ultrasound to make sure there was nothing internal, the doctor could not find anything wrong on the inside.  Such a mystery.  The doctor cleared him and I took him back to school.

Several hours later when I picked him up from school as I do every day I took him home and lifted him up on the counter to look again at his private area.  What I saw was horrific and shocking.

His legs were literally covered with these spots!  They were bright red and slightly bumpy but did not hurt or itch.  In all of my 18 years of having kids I have never seen anything like this.  As you can imagine I freaked out and immediately took him to his after hours doctor. 

When we got to the doctor's office they ran a blood test and a urine test.  I couldn't imagine what they were looking for but all of the worst thoughts ran through my head.  I heard words like "checking red blood cell count" and "protein in the urine"...words that would make any mother want to faint.  I waited patiently as the doctor finally came back in to tell me that the blood is good and urine is clear. "Thank God" I thought although I had no idea what any of that meant other than clear and good are words I thought were positive.  And then the doctor told me what it was:

Henoch-Schonlein Purpura (HSP)

"Say what?  How do you spell that doctor?"  Henoch-Schonlein Purpura.  Let's just call it HSP.   The after hours doctor was so sweet.  He is semi retired.  Old school.  As I was scrambling for my web browser on my blackberry to google this he was opening a book for me to read.  "This is a vasculitis and here is what it looks like".  He showed me a picture of what looks exactly like my child's legs. 

My next question is "ok where did it come from and how do we get rid of it".  The answer was "we don't know and we don't know".  Great.  I know nothing. 

Since this was the after hours doctor he recommended that since my son was not in any discomfort that I make an early appointment the next day with his regular doctor and discuss further treatments and follow up.  I do that and the next day when we go back to the doctor we get a better understanding that HSP is a vasculitis which most likely stemmed from a reaction to an insect bite.  HSP occurs when the immune system goes haywire.  The result is an inflammation of the blood vessels in the skin which get red and can bleed.  It can accompany joint pain and in some extreme cases can affect the kidneys.  While the HSP was in active mode we had to go regularly to the doctor to have his urine tested for protein. Fortunately all of those tests turned out negative.

What I also learned is that HSP can appear in varying degrees.  Some people have severe symptoms and others do not.  I was going to have to monitor my little guy to see where he would be on the scale.

The first 5-6 days of the HSP were particularly terrible.  He started to experience joint pain, swollen feet, swollen ankles, and swollen knees.  My usually tough guy was reduced to tears and on a few nights it was so bad he could not walk because his feet hurt so bad.  When I would sense that he was experiencing pain I would give him some advil which contains ibuprofen.  This seemed to help him somewhat and since I didn't know much about this condition I was learning as I went along.

Each day brought us a slew of new spots just as the old ones were clearing up and every day there was some kind of joint pain.  After trial and error I figured out that I would have to give him advil when he woke up in the morning and then again around 4 pm.   This made the most sense to me since I was trying to control the inflammation and discomfort and tried to get ahead of the symptoms rather than wait until they got to be too much to tolerate.  At night I would raise his feet on a pillow when he went to bed or if he was laying on the couch. I am not sure if this was a help to him but it kept him comfortable and that was my main goal.

The HSP remained active for the next 3 weeks and it was just last week that I noticed no more red spots and the joint pain was lessening.  I started to dial back the advil and stopped the 4 pm dose.  I was then going to monitor his pain level when I picked him up from school just to be sure.  Fortunately at this point it looked like we were on the downside of this condition.  After a few days I decided to start dialing back the morning advil dose.  And so here we are 5 days with no advil and the spots are nearly all gone.  My little man seems to be back to his old self.

A few things I have learned about this awful condition:
1.  No one really knows what causes it to happen.
2.  No one can really say how long it will last.
3.  The best treatment is to treat the symptoms.
3.  A large percentage of cases will recur.
4.  HSP occurs more often in children than adults.
5.  The urine must be checked because if proteins are found they need to be treated with a steroid to avoid kidney damage.

I feel much more prepared in case there is a recurrence.  For now I feel thankful that we got through these last few weeks and my little boy is back.