Our 4-year-old son was diagnosed with Henoch-Schonlein Purpura (HSP) on April 2nd, 2012. We had no idea what was coming. We were terrified. The journey was frightening, sad, hopeful, disappointing and long. Ultimately, Isaac is now back to his old self and we have not noticed any long-term effects. We are thankful to God and our prayer warriors for our healthy son. I learned so much about this disease and how to manage it. I hope that we can help someone else.
A few things about this blog:
1. I am not a physician so the information in this blog is my opinion.
2. Important information is high-lighted in blue.
3. If you or your child has HSP I encourage you to keep a well-documented calendar.
On the calendar include:
a. Every time you notice new purpura and where
b. Where you have joint pain and swelling and what time of day the inflamation occurs
c. When you take/give meds and what kinds
d. Anything else unusual
This will be helpful for you and your doctors.
Update…
ReplyDeleteIt's June 2015. It's been two years since Isaac made his recovery from HSP. I have since heard of a couple of other cases of HSP. Several of these parents hospitalized their child. Of course, take the advice of a physician, but if your child is in no real danger, keep them home. I feel certain that Isaac's case was shorter on average because he was mentally happier.
Lasting side affects? Well actually one; carsickness. Ever since HSP Isaac struggles with carsickness. I hope it is something he grows out of, but if that's all that ever comes of this terrible disease, we will be forever thankful.
The only other possible lasting affect would be kidney damage and there is no way to really know if his kidneys were permanently damaged. If they were, it was mild. Regardless, we are careful to keep him always hydrated and have explained to him how critical it is that he drinks lots of fluids.
He still doesn't like water that much. Sigh. :-)