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Damage to legs from Henoch-Schonlein purpura? Stumped the doctors
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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@becsbuddy just wanted give you guys an update. After my son’s rheumatologist appt he called and spoke with his other doctors. They said not May-Thurner syndrome so they decided To put us in touch with a diagnostic doctor. Spent an hour with him. He suspects it isn’t vasculitis and never was, even 2 years ago when they said HSP bc he presented atypically, He thinks it is autonomic gangliopothy (spelling?). He is doing a full genetic blood panel for Alex. Sending the blood to Washington. Said it will take 4 + weeks for an answer. If this isn’t it then he has plan two. I really liked what he has to say. He was thorough and listened! Finally feel like forward progress is being made! Thanks for your support here!
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3 Reactions@jsimmons74 I am so glad you finally got some answers! Or almost-answers. And that the doctor listened! You’re a smart mom, you never took shoulder shrugs for answers and continued to advocate for your son. This makes me so happy! Maybe @fmgeorge has some more information—they, too, were asking about Ganglionopathy. Have a good Mother’s Day!
Good evening,
I am 83 years old, male, Italian, married with three children and granddaughter.
In 2012 I had autoimmune disease Schonlein-Henoch Purpura IGA with kidney, heart, intestinal, epidermal and muscle problems.
Doctors recognized the disease after several months of hospitalization.
I was treated with immunosuppressants, now discontinued, and cortisone.
Currently the disease is in remission.
I still work because I have a small laboratory that designs and builds pneumatic automations and it is my hobby.
My problem is as follows: I am always very tired with pain in my knees, clouded mind and loss of balance.
All my tests are in normal.
All the medical specialists consulted could not give an answer.
Can anyone help me?
Sorry for my bad english
Tanks
Roberto
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1 Reaction@radicchi, your English is beautiful. I have moved your message to this discussion that @jsimmons74 started about Henoch-Schonlein purpura and her pursuit for answers about her son.
i'm glad to hear that the disease is currently in remission. But sorry that you continue to experience pain, cognitive issues and loss of balance. Have you considered working with a physio therapist for these issues?
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3 Reactions@radicchi I”m so sorry for all the confusion about what’s going on with you. Have you been able to see the specialists who treated you in 2012? You said all your tests came back normal, did this include tests on your kidney function? Also, are you using anything new in your lab that could affect you?
I wish i knew how to answer you or what to tell you. I think the best direction for you to take, is to continue to advocate for yourself and ask doctors what’s wrong.
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1 ReactionMy 6 year old daughter was just diagnosed w HSP. Any info or advise
She has high fevers, abd pain ,rash, pain in legs
@lmcazares - Welcome to Mayo Clinic Connect!
I’m so sorry your daughter is so sick- she must be very scared. Here is a link to Mayo Clinic’s description of the illness:
https://www.mayoclinic.org/diseases-conditions/henoch-schonlein-purpura/symptoms-causes/syc-20354040
It is basically an inflammation of the small blood vessels- appearing as a skin rash -more on the legs and lower body-, in the intestines and at times in the kidneys.
As you see, it can cause severe abdominal pain- even small amounts of blood can be seen in the stool.
There can be blood in the urine too- either seen as just a pink hue or only microscopically.
HSP often follows a viral infection.
There is no specific treatment, mostly observation and follow up physical exams, blood and urine tests.
In very severe cases the patient is treated with prednisone.
Hydration is important of course.
What is the plan for your daughter now?
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5 ReactionsHi @lmcazares, I'd like to add my welcome along with @astaingegerdm. You must be very worried about your daughter.
You'll notice that I moved your post about Henoch-Schonlein purpura (also known as IgA vasculitis) to this existing discussion
- Damage to legs from Henoch-Schonlein purpura? Stumped the doctors https://connect.mayoclinic.org/discussion/teenager-damage-to-legs-from-hsp-stumped-the-doctors/
I did this so you can connect with @jsimmons74 whose son also has HSP.
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3 ReactionsThank You very much. We have been up since 2am w leg and feet pain.
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1 ReactionOh dear. You must all be exhausted. Is she being seen at a specialized children's hospital?
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