That is crazy! You told me about it, but I wasn't picturing something that bad! I'm so sorry you're dealing with this Breanne. I'm serious about watching your kids anytime! I hope he gets better soon :)
Hi, I'm Melissa from California. I came across your blog while looking for information on this thing. We are going through this right now too. I have a 6 year old and it kills me to see the pain in her eyes. She too can't walk (mainly at night) and we have a few good days followed by bad ones. She has had a lot of bruising too. At first they were testing for Leukemia (Thank God they were wrong!). Anyway, it was at least comforting to read that we are not the only ones dealing with this odd thing. Weird thing is that Bella was never showing signs of any sickness :-( I hope your son feels better soon.
Poor guy, I hope he gets to feeling better sooner rather then later! I can't believe how bad he has it!! Hang in there!! (And it is TOTALLY ok to cry!!!)
Oh, what a pain, poor boy! He seems like he's been such a good sport. It's so easy to worry about your kids. They are so much more resilient than us, but I hope this passes quick, quick, quick.
Wow! I came across your blog while doing research tonight. My son has HSP too although a dermatologist tried to change the diagnosis two days ago....we are going back to the pediatrician and sticking with his diagnosis of HSP. Reading your blog and the progression of the disease only confirms that is what we are facing. My son is 9. The pain in his legs has been terrible. He started steroids on Tuesday afternoon, the swelling and pain was gone on Wednesday and he was bouncing off the walls. Today his knees where as big as melons and you couldn't tell where his ankles stopped and calves began. The rash is fading somewhat but that is not the worst of it anymore. I feel for you. I had never heard of this thing and hope to never see it again in my lifetime!
Hello, I came across your blog because I too was searching for info on HSP. My son who is 8 years old developed it almost 2.5 weeks ago.
I hope your son is doing better. Our dr.'s said they would have to keep monitering him for many months after to make sure no kidney damage was done.
I wish I would have taken my son Joseph's pics everyday to see the progession. It seems now the rash is fading but we did end up in the hospital because of severe stomach pain and dehydration. Scared me so badly.
Hi...I am so sorry to hear about your little boy. My 4-yr-old was also diagnosed with HSP right after x-mas. I am not convinced because his "purpura rash" scabbed up and peeled off. The child now has new pink skin underneath. I was wondering if you or any of the other moms who posted here have experienced anything like this??? A few of his blisters were popped at the ER and a clear liquid came out. I have looked everywhere trying to find a similar description of purpura, but have come across nothing. I understand your crying fits. I spent the holidays having the same outbursts due to sheer frustration and the lack of answers. Anything you can tell me would be a tremendous help. Thank you!!!!
Hi there. I'm another mom looking for info on HSP. Thanks for posting your story. My almost 9 yr old son was diagnosed with this just this morning and I have never heard of it before. It looks and sounds so heartbreaking having them so uncomfortable! I feel a little more prepared now, knowing what to expect.
We're just now correctly diagnosing our son with HSP (Americans living in W. Africa, so there were any number of scary things it could be!). I appreciate you're sharing your journey with this because I didn't realize we might be in for such a long haul so now I can better prepare myself for this. If you wouldn't mind, would you share if your son has had a reoccurrence of HSP or if it was just the once? Any updated info would be helpful, not just to me but it sounds like to other moms as well. :) Sheri
March 3, 2015 at 10:02 AM
What a mouth full!! And a pain in the #%&What it is: Henoch-Schonlein purpura (HSP) is a form of blood vessel inflammation or vasculitis. There are many different conditions that feature vasculitis. Each of the forms of vasculitis tends to involve certain characteristic blood vessels. HSP affects the small vessels called capillaries in the skin and frequently the kidneys. HSP results in skin rash (most prominent over the buttocks and behind the lower extremities) associated with joint inflammation (arthritis) and sometimes cramping pain in the abdomen. Henoch-Schonlein purpura is also referred to as anaphylactoid purpura. What causes it:HSP occurs most often in the spring and frequently follows an infection of the throat or breathing passages. HSP seems to represent an unusual reaction of the body's immune system that is in response to this infection (either bacteria or virus). Aside from infection, drugs can also trigger the condition. HSP occurs most commonly in children, but people of all age groups can be affected.
My little boy has this. It's very frustrating for us and painful for him. He had a slight cough in January and this is what happened because his immune system was 'too good' at fighting off his cold. It's been almost 3 weeks since the first symptoms and it seems like it'll never go away. It all started on the 8th of Feb. We've been to the Doctor's office 4 times, the hospital 2 times for 2 different blood draws and he's been on ibuprophen almost the whole time along with a 5 day perscription of steriods. They (the docs) say it could last up to 6-8 weeks!!! We are approaching the end of week 2, so hopefully it will be over before the 8 weeks. They say that he'll be 100% fine afterwards, which is very nice to hear. He has had some good days and bad days, but mostly it's good mornings and bad nights. He's been able to go to school for the most part (there have been a few days when he hasn't been able to walk, so he's stayed home). I'm just ready to have this all behind us.
I forgot to take pictures until after he got on the steroid and the spots were starting to clear up, but since then we have been taking pics almost everyday, depending on how bad it's been.
First off: (Feb 12th) Here is a lovely smiley face we found on one of his legs.
(and yes, he has Star Wars sheets)
[Image]
It all started with swelling in his right ankle, which you can see here.
[Image]
After the ankle, the swelling moved up to his knee and he wasn't able to walk because of the pain. After seeing the doc and getting the diaganosis, (Feb 11th) the swelling moved up to his spine and we had to go to the afterhours clinic. The swelling was 4 inches up his spine and 2 inches across!! (I wish I had a pic of this one) That night we were able to get the steroid, and he was walking the next day and felt great. At the end of the meds, (Feb 16th) he was clear of any spots and the brusing that came with the swelling was gone. The nurse told me that it could come back very easily, but I didn't think that it would have been as bad as it has been.
This is 2 days after he finished taking the steroid. (Feb 18th) The spots came back and he was starting to feel pain again. He went to school that day (this is a before school pic)
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After school the spots had made a fun design on his left ankle.
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The next day, (Feb 19th) he did great in the morning and I sent him to school. But by the end of the 3 hrs, his calfs had swelled up and he could barely walk. So he spent the rest of the day on the couch with his legs up and built a dinosaur lego set :)
[Image]
The swelling started in his left ankle this time (Feb 21st)
[Image]
Here he is enjoying some birthday cupcakes with is 'dinner tray'.
He had been really good and stayed on the couch most of the day, but after playing with cousins for a bit, his foot started swelling and the spots showed up too.
[Image]
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I kept him home on the 22nd and we went back to the docs to see if we could get the steroid again. They said no, and to just keep doing ibuprophen and eleavation until it goes away. I was very emotional that day and had a few crying fits.
Here are the backs of his legs (Feb 22nd)
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Feb 23rd: more swelling in the left ankle along with the spots.
[Image]
And swelling in his right elbow:
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Feb 24th: more spots on his legs
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And swelling in both hands!!
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There are even spots and swelling showing up on the bottom of his feet!
The spots show up bright red, then they fade away after a few days. Some days the only way I can tell if he has new ones is to feel his legs because the spots are raised!
Overall, for the past few days he has been doing great as long as we keep up on the pain meds. But usually he gets stiff in the evenings and has a hard time walking. I'm hoping that we've already been through the worst of it, but only time will tell.
***UPDATE: March 2015***
He has had NO other complications from his bout with HSP. He is a happy, healthy 11 year old boy. I hope this will help all those out there that are struggling with this in one of your children. It is so sad to watch them go through this, but it WILL go away. I am so happy that my son is healthy now.
17 Comments
Close this window Jump to comment formThat is crazy! You told me about it, but I wasn't picturing something that bad! I'm so sorry you're dealing with this Breanne. I'm serious about watching your kids anytime! I hope he gets better soon :)
February 27, 2010 at 9:59 PM
Oh my word! That is so crazy. I'm sorry, hon. I hope it goes away quickly. Poor kiddo!
February 27, 2010 at 11:14 PM
Hi, I'm Melissa from California. I came across your blog while looking for information on this thing. We are going through this right now too. I have a 6 year old and it kills me to see the pain in her eyes. She too can't walk (mainly at night) and we have a few good days followed by bad ones. She has had a lot of bruising too. At first they were testing for Leukemia (Thank God they were wrong!). Anyway, it was at least comforting to read that we are not the only ones dealing with this odd thing. Weird thing is that Bella was never showing signs of any sickness :-( I hope your son feels better soon.
February 28, 2010 at 12:57 AM
I have never heard of this before and it sounds awful! I hope for everyone's sake he gets feeling better soon!
February 28, 2010 at 1:28 PM
Poor Xander. That sounds very annoying. At least you know what it is and can have some idea of when it should go away. Hopefully that will be soon.
February 28, 2010 at 2:12 PM
Poor guy, I hope he gets to feeling better sooner rather then later! I can't believe how bad he has it!! Hang in there!! (And it is TOTALLY ok to cry!!!)
February 28, 2010 at 5:29 PM
How miserable!!! I wish him well and a quick recovery! Best wishes during this too.
February 28, 2010 at 7:45 PM
Poor Xander. I hope this thing goes away soon, such a long time to have to deal with something. Hang in there!
March 1, 2010 at 11:47 AM
Oh my! Sounds awful. Poor guy. I am so sorry! Good luck.
March 1, 2010 at 4:48 PM
Poor little guy it's hard to see your kids hurting and feeling helpless. I hope it all ends soon & Happy Belated.
March 1, 2010 at 8:54 PM
Oh, what a pain, poor boy! He seems like he's been such a good sport. It's so easy to worry about your kids. They are so much more resilient than us, but I hope this passes quick, quick, quick.
March 2, 2010 at 11:01 PM
I also wanted to post those brownies looked delicious, and Mara's hairstyles remind me of Princess Leia.
March 2, 2010 at 11:06 PM
Wow! I came across your blog while doing research tonight. My son has HSP too although a dermatologist tried to change the diagnosis two days ago....we are going back to the pediatrician and sticking with his diagnosis of HSP. Reading your blog and the progression of the disease only confirms that is what we are facing. My son is 9. The pain in his legs has been terrible. He started steroids on Tuesday afternoon, the swelling and pain was gone on Wednesday and he was bouncing off the walls. Today his knees where as big as melons and you couldn't tell where his ankles stopped and calves began. The rash is fading somewhat but that is not the worst of it anymore. I feel for you. I had never heard of this thing and hope to never see it again in my lifetime!
March 11, 2010 at 8:13 PM
Hello, I came across your blog because I too was searching for info on HSP. My son who is 8 years old developed it almost 2.5 weeks ago.
I hope your son is doing better. Our dr.'s said they would have to keep monitering him for many months after to make sure no kidney damage was done.
I wish I would have taken my son Joseph's pics everyday to see the progession. It seems now the rash is fading but we did end up in the hospital because of severe stomach pain and dehydration. Scared me so badly.
Again thanks so much for the info.
March 30, 2010 at 1:33 AM
Hi...I am so sorry to hear about your little boy. My 4-yr-old was also diagnosed with HSP right after x-mas. I am not convinced because his "purpura rash" scabbed up and peeled off. The child now has new pink skin underneath. I was wondering if you or any of the other moms who posted here have experienced anything like this??? A few of his blisters were popped at the ER and a clear liquid came out. I have looked everywhere trying to find a similar description of purpura, but have come across nothing. I understand your crying fits. I spent the holidays having the same outbursts due to sheer frustration and the lack of answers. Anything you can tell me would be a tremendous help. Thank you!!!!
January 3, 2011 at 5:56 PM
Hi there. I'm another mom looking for info on HSP. Thanks for posting your story. My almost 9 yr old son was diagnosed with this just this morning and I have never heard of it before. It looks and sounds so heartbreaking having them so uncomfortable! I feel a little more prepared now, knowing what to expect.
By the way, you have a beautiful family!
Thanks again,
Micki
February 18, 2011 at 4:55 PM
We're just now correctly diagnosing our son with HSP (Americans living in W. Africa, so there were any number of scary things it could be!). I appreciate you're sharing your journey with this because I didn't realize we might be in for such a long haul so now I can better prepare myself for this. If you wouldn't mind, would you share if your son has had a reoccurrence of HSP or if it was just the once? Any updated info would be helpful, not just to me but it sounds like to other moms as well. :) Sheri
March 3, 2015 at 10:02 AM