Reply to I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]OP here, so.....He has been fever free for 24 hours. I should have looked at what my last update was before I started typing this, but they have 3 things they are looking at 1) tick illness 2)autoimmune disease 3) MIS-C which is covid related. We are off isolation as 2 tests here at children's came back negative. He is still getting 2 IV antibiotics. They are still awaiting results of some labs. The main team is going to talk to the infectious disease team today to talk about discharge since he is pain and fever free and follow up out patient. So we will should know today if he's going home today or tomorrow or needs to stay longer.[/quote]

I’m the person who has been sent a link, and who posted about my daughter with HLH and liver failure. I’ll be super curious to hear what you learn about MIS-C, esp as Covid tests (nasal and antibodies) for our child were negative. We still don’t know the etymology of her illness, and even if it was a rare Kawasaki, Stephens Johnson’s, or MIS-C.  the docs seem convinced That it couldn’t have been related to Covid because of negative tests but no knowing the trigger is really hard.

To answer to the person asking about the SJS trigger they don’t know. But the SJS - even though it would it have been quite severe SJS - was the least of our worries. [/quote]

I'm also a parent of a child with sHLH and liver failure as well as other organ involvement, triggered by refractory SJIA.  (OP, I don't think your child has SJIA, so don't go down that scary rabbit hole on the internet. SJIA has a pretty distinctive fever pattern that you haven't described).

Did you find things that worked for the liver?  We have good HLH management with Gamifant, but aren't finding liver solutions.[/quote]

Wow- really?! I’m the person with the SHLH case and acute liver failure. I’ve only “met” people on the HLH Facebook support site so hearing your story is a big deal psychologically and otherwise.

Liver wise she is doing okay now. Her episode was in May and while we prepped for a liver transplant she didn’t need it. We were concerned as some numbers initially improved and then started sliding back but as of last tests, they were okay. She followed the 2008 (?) protocol. [/quote]

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