Damage to legs from Henoch-Schonlein purpura? Stumped the doctors

Posted by jsimmons74 @jsimmons74, Apr 18, 2020

My son, 13 at the time, was diagnosed with HSP vasculitis February of 2018. Took several days to diagnose because he did not present with purpura rash on legs. He was in the hospital for 14 days. After 9 days of uncontrolled pain (including nerve blocks, morphine and hydrocodone) he was transferred to Vanderbilt in Nashville and was treated with Toradol, released 3 days later. Then treated with steroids for 4 months. 60 mg for a month, then 40, then 20, then 10. He seemed to recover. We then moved to Chicago in June 2018. July of 2018 he would complain when standing that his legs itched. Went to see Rheumatologist who said if it got worse to a vein dr. Legs only seemed to itch when standing still so my son did not want to see a dr. August 2019 the itching of the lower legs has started to get worse when standing. His legs turn bright red, but subside when he moves or sits down with legs up. By January 2020 his legs have become extremely painful when standing still for just a few minutes. PC doctor tried to get us into a Vein Doctor, but no one would see him because he was "pediatric". He is now 15 and over 6 feet tall. I continued to call around to all kinds of doctors trying to find SOMEONE to see him as his symptoms got worse. Finally got an Interventional radiologist at Lurie Children's Hospital to see him. He was able to watch my son's legs turn bright red between his ankles and knees as he stood still for the ultra sound. He said the ultrasound appeared normal, except for slightly narrow veins, and that he had never seen anything exactly like my son's issues. He referred us to a Vein doctor at Northwestern for more tests speculating the HSP may have done damage to the valves in the veins. The doctor at Northwestern did a more detailed ultrasound of the leg "simulating" standing by using cuffs around his ankles. The test did not produce the pain or reaction that normally happens in his legs while standing. The vein doctor also said he had also not seen anything quite like this, but the valves seem to be working normally. He asked my son if compression socks helped. My son said "no" and the doctor said that further confirmed that it most likely was not a valve issue. We were referred us back to a rheumatologist at Lurie Children's Hospital. His symptoms have steadily gotten worse. Started out as just itching, then a little bit red, then purple legs between ankles and knees. Now it has travelled into his feet and just above his knees and has been more and more painful. His legs turn crazy colors or red and purple and the pain has increased from itching to tingling to very painful now. The pain will subside if he gets up and moves around or sits down with his feet up in a recliner. It used to only happen when he stood still, now it happens while he is stilling down playing Tuba. He also complains of lack of breath when plays now. He sometimes gets really bad leg cramps. We are still waiting for an appointment because Covid19 has now happened we do not know when we will actually get him in. I have several pictures of his legs and didn't know if there was a way to post those. I have read all the different vasculitis and none of them seem to fit. It is getting to a point where it bothers him multiple times daily now. He is getting angry and frustrated as it gets worse. As a mother I worry about long term issues and know how much pain he was in the first time and do NOT every want to see him there again. Any ideas from anyone? He loves marching band and really wants to try out for DCI, but that requires that he be able to stand still and also be extremely active. At this time he can do neither.

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jsimmons74 | @jsimmons74 | Apr 18, 2020

I was able to post a few photos.

Becky, Volunteer Mentor | @becsbuddy | Apr 18, 2020

Good morning @jsimmons74 and welcome to Connect. I’m so sorry you and your son are having to deal with this. You might find the information on this site for Mayo Clinic helpful. Did the prednisone help your son at all? Who gave your son the HSP diagnosis? Have you been able to contact the rheumatologist at Lurie to tell them that symptoms have gotten worse and that it’s affecting his breathing? Please call and then let me know what you find out.
https://www.mayoclinic.org/diseases-conditions/henoch-schonlein-purpura/symptoms-causes/syc-20354040

jsimmons74 | @jsimmons74 | Apr 18, 2020

In reply to @becsbuddy "Good morning @jsimmons74 and welcome to Connect. I’m so sorry you and your son are having..." + (show)

The prednisone helped until it was out of his system. I can’t get anyone to return our call because he hasn’t been seen yet. They will only see him sooner if it gets so bad he goes to the ER which right now we are definitely not doing bc of Covid19. I would love some ideas of things to read up on. I can’t find anything that fits his symptoms. Each dr says they are stumped and refer us on. I just want to make sure “waiting” isn’t casing more damage since it seems to be getting worse the last 2 months. The HSP was given in Chattanooga PC and the also by Vanderbilt Rheumatologist. That was 2018. Since then it has just been this strange pain and discoloration in his legs when he stands.

Becky, Volunteer Mentor | @becsbuddy | Apr 19, 2020

Good morning @jsimmons74 I used google scholar to find some other articles on HSP. They may be difficult to read because of scientific words. You might want to keep a notebook following all of your son’s symptoms. Especially keep an eye on his breathing. Any dramatic changes would warrant a trip to the ER even in times of Covid-19. He should also wear a mask when/if he goes out.
https://www.researchgate.net/profile/Thomas_Waller/publication/6127285_Henoch-Schonlein_Purpura_A_Review_Article/links/5b7ebd684585151fd12a361e/Henoch-Schoenlein-Purpura-A-Review-Article.pdf
Can the doctors you originally saw give you a referral to a rheumatologist? Are any of the rheumatology offices in your town open for you to get an appointment? This must be so hard for you, but you are doing the right thing by advocating for your son.

Colleen Young, Connect Director | @colleenyoung | Apr 19, 2020

In reply to @jsimmons74 "The prednisone helped until it was out of his system. I can’t get anyone to return..." + (show)

@jsimmons74, I'd also like to add my welcome. COVID-19 is proving to be a big disruptor, especially for people dealing with managing chronic issues or not yet diagnosed issues. I'd like to tag other member who have experience with Henoch-Schönlein Purpura (HSP) also known as IgA vasculitis (IgAV) to help out as you wait for appointment. @astaingegerdm @ralph97 @anet may have some experience to share with you and your son.

JSimmons, I'm sure you know about the Vasculitis Foundation, but just in case you haven't this may prove to be useful information for you - IgA vasculitis https://www.vasculitisfoundation.org/education/forms/henoch-schonlein-purpura/

It is frustrating that you can't get an appointment at Lurie Children's because your son hasn't been seen there yet and COVID has reduced new patient appointments. Have you considered contacting Vanderbilt where he has seen a rheumatologist and asking if they offer video consults. I know Mayo Clinic is doing this for patients. It might be worth a try.

jsimmons74 | @jsimmons74 | Apr 19, 2020

Thank you for the information.

jsimmons74 | @jsimmons74 | Apr 19, 2020

In reply to @colleenyoung "@jsimmons74, I'd also like to add my welcome. COVID-19 is proving to be a big disruptor,..." + (show)

I did find a few things on that site that I wasn’t aware of. Thank you. Hopefully others on here will have some ideas as well to get through this while we wait for an appt.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 19, 2020

In reply to @jsimmons74 "I was able to post a few photos." + (show)

@jsimmons74 - It is very helpful to see the different photos. Your son must really suffer- the photos of the below knee angry red ,raised inflamed skin were almost shocking in the degree of inflammation. It does look like vasculitis, especially also with pain. I assume this is a continuation of the HSP vasculitis, but different. There is another painful nodular inflammation of the the lower extremities called erythema nodosum.
It seems as if he would need to have a skin biopsy to see what actually is going on under the skin surface. I hope with a diagnosis he can be treated with anti- inflammatory or anti- immune medication. He did respond to prednisone. I have just written down my thoughts here -I have dealt with different autoimmune conditions. Hope you can get to see someone soon. The photos are very helpful. Please stay in touch!

jsimmons74 | @jsimmons74 | Apr 20, 2020

In reply to @becsbuddy "Good morning @jsimmons74 I used google scholar to find some other articles on HSP. They may..." + (show)

Thank you for the article. I did have to look up a few words, but learned a few things. I am going to call the Lurie’s rheumatologist that he has an appointment with and make sure they are still going to see him in a few weeks since it has definitely happening more frequently and the pain is higher on the scale then it was. The good news is, it doesn’t flair up when he moves - he likes to mow the yard for “something to do” I definitely understand he is high risk so I haven’t allowed him to go anywhere (except to take dog on a walk around the block and our yard) He hasn’t seen any of his friends since March 11 when the closed school - this time is so challenging on the kids ;(
Praying they will still see him, so we can get him some relief.

jsimmons74 | @jsimmons74 | Apr 20, 2020

In reply to @astaingegerdm "@jsimmons74 - It is very helpful to see the different photos. Your son must really suffer-..." + (show)

Thank you for the information. All of his tests so far have been related to the valves in the veins, but now that they have ruled that out maybe the will move on to other testing once we get to see the Rheumatologist. He handles it pretty well most of the time because the pain subsides when he lays down. It doesn’t hurt when he moves so that is a blessing. He is able to walk the dog for some exercise and mow the yard. When it does flair up he gets so angry and frustrated. Now that it bothers him when he is practicing tuba he gets very angry bc it is the one thing he loves doing. Holding out they do not cancel our appt at the end of the month, but I am going to call today and make sure bc it has definitely gotten worse.