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Wednesday, 06 November 2013 08:00

Henoch-Schonlein Purpura


Henoch-Schonlein purpura is a disorder that causes inflammation and bleeding in the small blood vessels in skin, joints, intestines and kidneys. The most striking feature is a purplish rash, typically on the lower legs and buttocks. HS purpura can also cause abdominal pain and aching joints. Rarely, serious kidney damage can occur.  (Mayoclinic.com

Saturday, October 26th, on Audrey's first birthday as it happens, we discovered a rash on Clara's legs and lower stomach. She had light pink spots all over, and she insisted that they didn't hurt or itch or bother her in any way. That morning I had opened a new package of tights for her to wear, and since she had shown signs of skin sensitivity as an infant, I assumed the rash was from the unwashed tights.  Since she insisted the spots didn't bother her, and she also was determined to wear her new tights, we decided it would be ok to leave them on her. 

When we arrived home from Audrey's birthday party, the rash had spread to cover Clara's body except her face and head, although there were a few spots on the underside of her chin. They still seemed not to be bothering her, but like the paranoid mother I am, I turned to Google to solve my problem. I searched for images of 'rash on toddler legs' to try to find something that appeared to be the same as what Clara found. The closest photo I found was the one in THIS article. If you don't follow the link and read the article, I'll sum it up for you - a 9-year-old boy developed this rash (that, in appearance, seemed identical to what I saw on Clara) and died.

Assuming I was overreacting - like I'm known to do - but wanting to play it safe, I called the local health line and spoke to a nurse about it.  After asking me what seemed like a thousand questions about whether Clara had eaten anything strange, etc., she asked me to describe the rash. After examining her closely, I had to use the word 'bruise-like' to describe some of the small spots on her legs. As soon as I said this, the nurse told me that a rash with a bruise-like appearance is a 'red flag' in her books, and that I needed to take my daughter in to a clinic immediately.

I stammered and tried to back track... I was just overreacting, wasn't I? It was after 10pm and we had just gotten back from a party and the girls needed sleep for the next day when we would be having a second party for Audrey... I really wasn't expecting to be told to take her in. I was expecting to be reassured that she was probably fine and that there was no reason to be concerned unless x, y and z happened.  I guess the bruising was x, y and z... 

I made Brian look closely at Clara's spots also - because he wouldn't exaggerate the symptoms - and he agreed that they looked suspiciously like bruises. And then she opened her legs slightly and a larger, dark purple spot became visible to us. We gasped, and while I put Audrey to bed for the night, Brian put Clara in the car and drove her to the hospital. 

After waiting for two hours in the hospital Emergency Room (a 3-car accident, involving at least 4 children, happened just as they were driving to the hospital and this backed up the whole emergency room for the evening. This was one of those situations where - instead of being frustrated by the wait - we could only be thankful that it hadn't been Brian and Clara in the collision), Clara was diagnosed with Henoch-Schonlein Purpura.  Purpura is the name for the skin discolouration, and Henoch-Schonlein are the names of the two German doctors who re-discovered it in the 1860's. 

I sent out a few texts to family members and friends, informing them of our situation and asking for prayer. One close friend, who happened to be on the University (and hospital) grounds when she received my text, and who also happens to work in the medical field asked if there was anything she could do. I asked if she would want to go keep Brian and Clara company while they waited. Brian's phone was dying, and I knew that my friend would be able to keep me well informed, while making sure to ask all of the right questions of doctors. I felt more at ease knowing she was there. 

At one point, however, as my friend was relaying the information about Henoch-Schonlein Purpura to me via text, my rapid questions prompted her to call me and have me speak directly to the doctor.  What I was beginning to realize, as she spoke about the dangers of kidney damage, was that this 'Henoch-Schonlein Purpura' was the same disease I had read about earlier.  The same disease that killed this young boy. It was helpful to speak to the doctor, however, and to have her explain how Clara's immune system had gone into overdrive (we have all been sick for weeks) and this is how it had overreacted. I was told that because her blood vessels were leaking (scary echo of what my Dad had died of not two years earlier...), there could also be leaking inside her body.  She would need to have her urine checked for blood, and she would need to go in to the doctor for weekly check-ups for two months, and then monthly for a year.  It would be a lie to say I was anything less than terrified. 

I read a little bit more about the disease and what I could expect. In 85% of cases, the child will experience severe stomach pain and vomiting - I would have to brace myself for that. It was also common to experience swelling and pain in the joints - I would make sure to watch out for, and be sensitive to this as well.  After three hours, my baby was sent home from the hospital, seemingly well but tired as she gladly crawled into bed and fell asleep. 

The next day, her legs looked like this. 

 This photo doesn't really show what we saw - the bruises were much darker than this photo indicates. 

 Two days later - you can see where some of the darker bruises were, and how they are healing - they looked like this. 

It has now been over a week, and so far Clara has not complained of any joint or stomach pain, and hasn't vomited once. I pray this means that her case of HS Purpura was a mild one, and that no further bleeding has occurred. She had her first weekly appointment last week, and her urine test was perfectly clean. Tomorrow will be her second, and I am praying again that nothing else will be found. I also pray that this was a one-time event, and that she will never again experience this - especially since I'm sure additional occurrences would only increase the likelyhood of more severe symptoms. 

It has been a rough few months for us, and this has so far been the worst thing we've experienced with our daughters. As it turns out, Clara is likely fine, but I can't describe how scary it is, as a parent, to know that your child has something rare - that could be deadly.  I know I'm not alone in my experience, and I probably can't think of one single parent who hasn't experienced this same fear at some point.

I would love to say that with everything going on in our lives that I'm feeling sorry for myself for, that this gave me some perspective and made me realize how unimportant everything else is, and maybe to some degree I do understand this a bit better - but I feel as though I'm in a fog, and despite this, I haven't been able to get out of it. So much has been so hard lately, and I just want to throw up my arms at God and say 'What?? What message are you trying to tell us that we're clearly not getting??' I don't know. This was just one more thing. 

Read 2180 times Last modified on Monday, 04 November 2013 20:31

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