Five days in hospital, no answers: Leg pain and bruising

Anyone know how to post this on other boards? Yours was the first, but I believe other people in other areas may have seen this. I don't want to exhaust any possibilities.

Thank you!

@longlostbrat I can certainly understand that you want answers! This must be such a difficult situation for you and especially your son. You were in the hospital for 5 days—were any specialists called in during that time? Or special tests done? I would suggest that your son see a hematologist as soon as possible. If the answering receptionist gives you a hard time, just say that your son was just discharged and the doctors want him seen immediately. Please call first thing tomorrow
You posted in the autoimmune disease group—do the doctors suspect an autoimmune disease?

Thanks for the advice! While we were in, they consulted with infectious disease and hematology (at my insistence). They checked him for a bunch of infectious diseases including tick born illnesses, and also checked blood clotting factors.

I tried to post this on other boards, but this one was first and I didn't know it would only let me post once. I posted here because one of the doctors they told me to follow up with was a rheumatologist.

He needed a break from the hospital. I'm most likely going to take him to another emergency department tomorrow at a hospital about an hour away. It's a teaching hospital and where he has all of his heart surgeries.

Oh, and the hematologist who saw him said to follow up with their office in 2 weeks! What?!?!

@longlostbrat it certainly sounds like you have a good handle on things. And i sure agree with going to his previous hospital. You are being a great advocate for your son!
What specifically did you read about posting only once? I’m going to ask a moderator if they can explain .
Will you contact me once your son has been seen and you know a little more?

Hi, @becsbuddy

I can't remember exactly, but when I tried to post this on another board, it said something to the effect of it sees I have already posted this and it will keep it on hold for a couple days.

I will keep you updated. Right now, he's trying to give me a million reasons why he shouldn't have to go back tomorrow...haha! I can't blame him, but when your Mama instincts say to do something, you can't ignore them, you know?

I would never say this to him, but I'm thinking possible leukemia or ITP.

@longlostbrat Welcome to Mayo Clinic Connect, even if your reason to be here is a puzzle for you. Becky has offered great ideas, that I second.

Going back to his original teaching hospital is a great idea, as they will have his prior records. Were you able to access his lab reports and records from where he just was? Remember, you may need to sign off permission to release those records to his teaching hospital; you if he is under 18, himself if he if over 18. Did they give you any medications upon release, or instructions, except to see a hematologist in 2 weeks?

Any changes in medications recently [even brands or name brand to generic]? Any changes in environment or living situation? Any insect bites or chance of insect bites? Here is what Mayo Clinic has to say about petechiae, but work with your Mama Bear instincts!
https://www.mayoclinic.org/symptoms/petechiae/basics/definition/sym-20050724
Ginger

You definitely need an infectious disease doctor and should have been seen by one while in hospital. Where do you live. What facility was he in. It was so easy to call in a consult while a patient. Does sound autoimmune
Need other questions answered.

Having worked in Pediatrics I thought of a condition like the one your son has now called Henoch Schönlein Purpura, HSP, a type of temporary vasculitis. Most cases are seen in children, but it has been seen in adults too. I attach the link to the Mayo Clinic description https://www.mayoclinic.org/diseases-conditions/henoch-schonlein-purpura/symptoms-causes/syc-20354040
It looks like a vasculitis of some kind- basically an inflammation of small blood vessels- immune system related.
HSP mostly appears on the lower extremities.

I add my welcome @longlostbrat. I have added your discussion to the Blood Disorders group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) and the Infectious Disease group (https://connect.mayoclinic.org/group/infectious-disease/). That way you don't have to repeat your questions in the other groups, but can monitor all responses in one discussion.

@longlostbrat - You follow your Mama instincts and take him tomorrow!
I doubt that leukemia is on top of the list. You say it looked liked an infection to the doctors- with the recorded WBC count it probably refers to a viral infection. Many viruses can set off one of these kind of immune system illnesses like vasculitis.
I think it might be a good idea to see a hematologist first. They can interpret the blood counts and see if any other specific tests are needed.
Of course your young man dislikes hospitals! He must have been very strong and brave to go through such big surgeries when he was younger.