Hey there everyone! Sorry I have been so quiet lately. The move of course has kept us crazy busy but along with that – my 10 year old son was diagnosed with Henoch-Schönlein Purpura or HSP (a form of vasculitis /auto immune disease) for short in early December. I can’t even begin to explain how crazy this illness has been for poor O! I’m writing this to help others out there find some much needed help and resources. Although HSP only effects about 13 in 100,000 – there is little information to help the parents and patients! So – here is our story (sorry – long post but parents dealing with an child with HSP – it’s helpful to know exactly how things went for each case)
In early December O (10 year old boy) was complaining of abdominal pain and his underwear had been leaving marks on his stomach. In general he just didn’t seem to want to play much either. We just assumed it was food related or a bug and that he had outgrown his undies! This went on for a week or so until the abdominal pain had him bent over in pain. We gave him advil and the next morning he seemed to be doing better. That Monday Dec. 7th – he went to school, returned and went on a playdate. That afternoon he was complaining about his legs – it looked like he had gotten himself into a bunch of chiggers! We went on with our evening but the rash/chiggers (so I thought) kept spreading and went all the way up both legs and onto his buttock. Both my husband and I thought maybe it was something like chicken pox?????!!!!???? So off to the Dr. we go on Tuesday. We noticed that his feet has started to swell as well.
Dr. diagnosed him with Henoch-Schönlein Purpura and sent us up to the children’s hospital for blood work. In that short period of time – his feet had swollen so much that I had to carry him on my back from the parking lot to the hospital. Thank goodness, though he was scared, he was in good humor and we tried to make it fun… though getting blood drawn is absolutely NO FUN!
So begins the nightmare of the next 4 weeks. We were told that HSP lasts 4-6 weeks and just keep him comfortable with advil/tylenol and lots of rest. No one prepared us for how awful it would be! The abdominal pain was so intense that he would just whimper and cry all bent over, the swelling was obnoxious and moved around about every two days – starting with his feet, hand, wrists, elbows, knees, ankles, lower back, head, TESTICLES and lower back. We went on Dec 8th up the the children’s ER with swelling on his lower back (he couldn’t even stand up straight!). Luckily the Dr. had some experience with HSP and was helpful (funny side story – the er nurse asked him to rate his pain on a scale of 1-10, 1 being a paper cut and 10 being Jesus nailed to the cross…. such and odd thing to say to a child!)- in the end we did an ultrasound to make sure it was just edema (it was!) and he sent us on our way with a script for Tylenol with codeine (this was an absolute sanity saver! He got so much worse from there and I don’t think we would have been able to keep him from going back to the hospital without this!). For the next 4 weeks we kept his legs elevated as the rash/purpura (it’s not a rash at all but leaky blood vessels) and swelling were so bad that he didn’t walk for almost 4 weeks. The tylenol with codeine helped with the abdominal pain (usually got worse at night) but we also gave him benedryl to help his fall asleep. We used a cortisone cream on the purpura that eventually got scabby but was often itchy and we used a heat pack on his abdomin. Also the rash/purpura moved onto his arms and belly and face and he also developed nose bleeds around 2-3rd week with blood shot eyes. He also had very foamy urine (make sure to check their urine and poo for blood).
On top of that – we purchased and did daily pee checks – this is VERY important as HSP can effect the blood vessels of the kidneys as well as the intestinal lining. You use the pee test to see if there is blood and protein present in the pee. It’s a super easy test and I highly recommend you get some to do at home. The Dr. did a weekly check as well for the 1st month and then monthly checks for the next several months. It’s also important to monitor their blood pressure to insure the kidneys are not in distress. The school nurse (if your school has one) and the local fire department can help you with this as well – keep a daily journal with all symptoms/treatments/blood pressure and urine results and take pictures! Keep them hydrated!
O’s urine ended up showing blood and protein in it around week 3 so we were referred to a pediatric nephrologist (kidney specialist) to help us monitor him. Basically he said that as long as the rash/purpura and other symptoms were getting better (at that time they were) that we didn’t need to do anything more than continue to monitor his urine and blood pressure. He may have another flare up in the next few weeks but that was ok as long as he didn’t get severely worse and to only use Tylenol since the HSP is now involving the kidneys (it’s not advised to use advil/ibuprophen when the kidneys become involved – ie blood/protein in the urine).
After the 4 weeks O did start getting better but would have various days were his abdomen hurt or his feet/knees would swell but overall doing pretty good until sometime around the end of Jan he started complaining more about abdominal pain feeling dizzy.
Feb 25th – Dr said he felt O was having a reacurance of the HSP and suggested we start 5 days of prednisone. We decided to put off the steroids for a bit and see if it would magically just get better! It did not. The next week he was complaining of nausea. Knees and feet swelled a bit after trying to run the mile in PE – removed him from all physical activity from school. (FYI – we ended up getting a form from the school nurse to put on file with the county to let them know of our ongoing health issue so that the county wouldn’t send us ugly letters about him missing so much school).
After a very mild spring break at the beach – O had some form of abdominal pain the entire week and just not a lot of energy. When we returned home we decided that we needed to give the prednisone a try because this clearly wasn’t going away on its own.
The 1st day on prednisone he was sent home from school – his abdominal pain seemed worse, severe headache and knee join aches. Next day – same thing – sent home from school within two hours. We go back to the Dr and they are just stumped. Usually prednisone helps in a very short amount of time so we have now stopped the prednisone. We did more blood work and now we are looking in various directions to make sure there isn’t anything else going on besides the HSP. We are going to a GI doctor and we put in a referral to a pediatric rheumatologist. In the mean time they have put him on a daily dose of Nexium and Neproxin (aleve for kids). He pretty much missed school all last week but luckily with all that rest – he is feeling pretty good this week (though we have resorted to using the pain scale of 1-10 to help understand how he feels each day)! I find that he seems to do worse after being active – even just playing in the pool or at the beach for a day -.
So – if your child has been diagnosed with Henoch-Schönlein Purpura – there are two groups on facebook that have been so VERY VERY helpful! AND KEEP A JOURNAL!!!!
Also – here is a link to the pee test strips: We used the 10 parameter (top option – it give you 100 test strips)
Also – I can’t tell you how much we have used this heat pack – it has been well worth the money and used almost nightly for 4 months now! We heated it in the microwave for 2 minutes.
When O’s pee was showing lots of blood and protein – I started giving him a multivitamin with fish oil (advise from another mom in the facebook groups) and coincidence or not – his pee went from +3 or more to just trace amounts of both blood and protein within a week (after months of +3 or more) – the dosage says 4 chews per day but I only give him 2, sometimes 3. They taste pretty good – not fishy at all.
Pray that we are able to get into the pediatric Rheumatologist in Gainsville soon – even though he is feeling better this week, he still has some form of daily abdominal pain and has missed over 3 weeks of school (would have been 5 if it hadn’t been for Christmas break falling right after he had been diagnosed). Sorry this post is so terribly long! Best of luck to anyone dealing with HSP! Its just awful!
Other general notes – we took him off cows milk, anything with food dye, only white cheese and while he was having kidney involvement we limited any processed meats like deli meat/ham/pepperoni/hotdogs, all dark soda (yes we allow our kids to have sodas as a treat on the weekends) as well and also tried to make sure all meals were fresh/not processed. We included good foods for kidneys like cherries and eliminated bananas etc. We even tried gluten free (though that was short lived and hard to do while we were also doing no deli meats). Overall the only thing we feel makes him feel notably worse is sugar/soda. I find it hard to keep a child hydrated – so during the worst of it we did 1/2 gatorade to water and finally we found some naturally flavored sparkling waters that he likes. Anyway – some other people have said gluten free helped them….something to try if you can/willing. Oh and we even tried the Bragg’s apple cider vinegar but he hates it! (well what kid is gonna enjoy taking a spoonful of vinegar! we even tried mixing it – no go and Bragg’s sells a limeade made with it – no go for him but I drank it and it was actually pretty tasty)
Feel free to email me firstname.lastname@example.org if you have questions/need help! Thanks for listening!