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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[Post New]09/13/2020 15:12
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Anonymous
Anonymous wrote:OP here, thank you so much for all the support. The doctors have talked and at this point the people at children’s said to stay put where we are and they advised doctors here on more tests. Autoimmune, parasitic etc. his fevers are better controlled today so I’m feeling better. We are staying the night again, will update when I have more answers. Thanks for all the suggestions we have discussed most of them. Will update as I can


If he is at GBMC, do everything in your power to get him moved. That hospital is awful.
[Post New]09/13/2020 20:09
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jsmith123
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How is your son doing OP? And how are you holding up?
[Post New]09/13/2020 20:59
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Anonymous
Hi OP, I hope your son is doing better. I’m a np and also encourage you to ask about Kawasaki.
[Post New]09/13/2020 21:21
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Anonymous
OP here, we are settled in on the covid isolation floor at Children’s. We have to stay in our room till his (now 3rd) covid year comes back negative. They have to retest everyone that comes in with a possible covid related diagnosis. While they still don’t know what’s going on they are considering MIS-C, and they have a whole team of doctors here specifically for that one illness. Also looking at auto immune stuff. Also I actually have a flat bed/couch here so I’m happy lol. Will keep you posted!
[Post New]09/13/2020 21:27
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Anonymous
Anonymous wrote:OP here, we are settled in on the covid isolation floor at Children’s. We have to stay in our room till his (now 3rd) covid year comes back negative. They have to retest everyone that comes in with a possible covid related diagnosis. While they still don’t know what’s going on they are considering MIS-C, and they have a whole team of doctors here specifically for that one illness. Also looking at auto immune stuff. Also I actually have a flat bed/couch here so I’m happy lol. Will keep you posted!


I am so glad you are at Children's! I have no doubt you will both be well taken care of. There's a little "cafe" on the 7th floor that I think is open 24 hours or at least much past the cafeteria times. The cafeteria coffee and donuts are actually decent and they also have sushi and salads. The deli counter is good too. Good luck with everything and hope you both get some sleep tonight! If you get a nurse named Mark please say hello to him from one of his 3 year old patients two years ago (doing fine now).
[Post New]09/13/2020 21:27
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Anonymous
I’m glad you’re at Childrens. I hope you start getting answers soon.
[Post New]09/13/2020 22:27
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jsmith123
Member Offline
Anonymous wrote:OP here, we are settled in on the covid isolation floor at Children’s. We have to stay in our room till his (now 3rd) covid year comes back negative. They have to retest everyone that comes in with a possible covid related diagnosis. While they still don’t know what’s going on they are considering MIS-C, and they have a whole team of doctors here specifically for that one illness. Also looking at auto immune stuff. Also I actually have a flat bed/couch here so I’m happy lol. Will keep you posted!


I'm sorry you are still waiting for answers OP, but glad to hear you're at Children's now. Hope you get some good news soon, and some rest.
[Post New]09/13/2020 22:36
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Anonymous
Thinking of you, op. He is in good hands at childrens.
[Post New]09/13/2020 22:59
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Anonymous
Anonymous wrote:OP just a tip - call a Child Life Specialist so you can duck out to grab something to eat. There is nothing walkable around there, so get Ubereats/Doordash to deliver you something better than cafeteria food. If you want to take a walk if your DH relieves you, you could stroll over to the Howard campus and then over to Meridian Hill park.


There's a Panera at the WHC Physicians Office Building, FYI. Easily walkable from Children's.
[Post New]09/13/2020 23:46
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Anonymous
Hugs, OP. I am. I am thinking about your child and you.
[Post New]09/14/2020 00:27
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Anonymous
Hi- I usually don't post things on public fora -- and I don't although I don't know how much I can help, someone sent me the link and I will share what i can just in case it's useful...

My child had something similar, potentially, this year. She had either Kawasaki, MIS-C, and/or Steven's Johnsons. She presented with a fever that wouldn't go away, as well as a rash.

In the end she wound up with acute liver failure and HLH (the latter of which was diagnosed with via a bone marrow biopsy). She and the family all tested negative for COVID and COVID antibodies.

She was treated with 4 rounds of IVIG and 3 rounds of plasmapheresis.

She's fine, we think now, but sharing above in case it's useful. I'd also really be curious to hear how things evolve for you.
[Post New]09/14/2020 08:00
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Anonymous
Woke up thinking about you and your son. Sending you both much positive energy and thoughts.
[Post New]09/14/2020 08:06
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Anonymous
Anonymous wrote:Hi- I usually don't post things on public fora -- and I don't although I don't know how much I can help, someone sent me the link and I will share what i can just in case it's useful...

My child had something similar, potentially, this year. She had either Kawasaki, MIS-C, and/or Steven's Johnsons. She presented with a fever that wouldn't go away, as well as a rash.

In the end she wound up with acute liver failure and HLH (the latter of which was diagnosed with via a bone marrow biopsy). She and the family all tested negative for COVID and COVID antibodies.

She was treated with 4 rounds of IVIG and 3 rounds of plasmapheresis.

She's fine, we think now, but sharing above in case it's useful. I'd also really be curious to hear how things evolve for you.


not OP but thanks for posting. What do they think the Stevens Johnson may have been triggered by?
[Post New]09/14/2020 08:18
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Anonymous
Juvenile idiopathic arthritis?
[Post New]09/14/2020 10:06
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Anonymous
Weird. My son had the same symptoms and was hospitalized in early August. He also had a full body rash. It was either mycoplasma infection or an allergic reaction to a cephlosporin. Luckily it didn't turn into Steven Johnson syndrome. Scary stuff.
Thinking of you!!
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