What Is Henoch-Schonlein Purpura

What Is Henoch-Schonlein Purpura

   Henoch-Schonlein Purpura is an autoimmune, vasculitis which if left unmonitored can cause serious problems in your kidneys.  There can be different signs of it, a rash appearance – mostly on the lower part of the body, swollen joints, sore stomach, vomiting, body pains, or blood in the urine and stool.  Each person could get these at different times, only certain ones, or maybe only one of them.  What causes Henoch-Schonlein Purpura ? It’s rare but in our case the immunizations he had, or medications, foods, insect bites, and there can be others. It’s one of those diseases that very little is known exactly what causes it. It is also more common in children than adults.

Being Diagnosed with Henoch-Schonlein Purpura

   My son was diagnosed with Henoch-Schonlein Purpura, HSP for short, in February of this year. However, the whole situation started last November.  I’m going to start off by saying this, since its a heated debate out there, this was caused by his immunizations in November. Yes, the immunizations have caused a huge health problem for my son. It’s been super stressful and frustrating, but would I have him do the immunization again? Yes, only because the consequences of the other diseases would be much worse than this one. The doctors I have dealt with have explained that it was linked to the immunizations he had. I have mentioned before that I’m not a medical professional and this is our own personal experience.  I’m going to share what we have discovered about Henoch-Schonlein Purpura. If your child has any signs I mention please see a doctor. 

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Ben’s First Signs of HSP

   He received his immunization shots in November, then the next day these spots appeared on his legs and feet. They looked like freckles all over his legs. I asked him if he was in pain or itchy and he said no. I told him to let me know if things get worse or if they start to bother him. The following day they were still there but he was still feeling normal.  For the following days he had gone to his dads and he never mentioned them again. Ben is one to tell me if something isn’t right or feels wrong about his body. I’ve always made sure he feels comfortable coming to me if something is wrong. For the next week he was feeling normal and everything seemed to be okay. 

The Realization That Something Isn’t Right

   Unfortunately, 2 weeks later, things got really intense. Around midnight one, night he woke up vomiting all over his bed. I brought him to the bathroom and helped clean him up and to check things out. When he looked at me I noticed that all those “freckles” were all over his face. I was shocked to see him like that and immediately took him to the emergency room.

   He had a high fever, spots all over his body (except stomach and middle back), vomiting lots, body aches especially in his legs and chest area, and was really weak. He had never been sick like that ever so it was really scary not knowing what was going on. The doctors in ER were great with him, they ran blood, urine tests, and X-rays to rule out mono, pneumonia, and some other diseases. They couldn’t find anything so at the time they figured it was a flu virus or gastritis.  They pretty much diagnosed it as gastritis because sometimes spots/markings could appear from it. They also ruled out the spots being contagious. Over the next three days the spots started to leave his face but not his legs and feet. He started to feel better but the spots stil remained. 

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Over The Following Month

   On the third day I took him to another doctor to get a second opinion because l wanted to see if anyone could give me a more solid answer. The second doctor agreed with the first one that they spots are not contagious and that they will go away over time. Since he was feeling better he wasn’t concerned. Over the next month, the spots still remained. I took him to another doctor because the spots seemed to be changing to larger sizes and more of a red colour rather than a small freckle.  No doctor could figure out what exactly the spots were.  Over the next few months these spots would flare up really bad and he would get really sick. He had never been sick so many times. It was like every 3-4 days he would get sick again and again. No one else in the family go sick or got the spots. Still at this point we didn’t know it was Henoch-Schonlein Purpura. 

Finally a Diagnosis

   In February, a doctor said I think this is, Henoch-Schonlein Purpura, which literally meant nothing to Ben and I and just seemed like a confusing name. So we just use the abbreviation for it now,  HSP.  He immediately sent us to the hospital to see the paediatrician.  The paediatrician ran a bunch of tests again and agreed with the doctor that had sent us there. He said one thing about HSP is you really have to monitor the kidneys because this can really affect them even if there is no physical sign like the spots.

   Over the next months we had to monitor his health until we would see a rheumatologist paediatrician in Saskatoon.  We saw the specialist in May and Ben’s physical feature of HSP have reduced over this time  but still remained.  Even though the marks on his legs have slowed down we still have to check his urine because it could still affect his kidneys. For the next year we have to test his urine every two weeks and every 6 months see the specialist because it could affect him internally for that long.

   Normally, HSP takes about 6 weeks to heal but Ben’s situation has lasted much longer. It’s been an intense 8 months but he’s not getting sick like he was, and the marks are pretty much gone. However, that doesn’t mean the kidneys are safe still but with this constant monitoring we will be able to catch it quickly if things change. The beginning of this was really hard because no one was able to give us a clear answer about what was happening to him. He missed so much school this year but now we know what it is and are able to watch it to make sure things don’t get worse. If your child is starting to have spots on their lower body this could be the same thing but check with a doctor and get them to do tests. Ben is doing much better and is really happy he can enjoy the summer in shorts without having red spots all over! If you have had a similar experience or have any questions please feel free to leave a comment. 

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