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

[Anonymous]

Anonymous wrote:

Anonymous wrote:
I just want to note that it's perfectly possible your child has had Covid, and is now suffering from complications, but the tests are coming back negative because the infection itself has passed. I didn't see if they had tested for antibodies too, but all these tests can be negative and the patient can still suffer from Covid complications. It has happened before.

OP here, I 100% think my daughter, wife and myself had covid back in January/February my son did not get sick. I think this is MIS-C due to him having covid and being asymptotic. That said I think we will leave the hospital with no diagnosis. I had antibodies tested and they were negative months after the illness.

I hope you get good news soon, op. Just wanted to now that if you've been in the DC area, it's unlikely you had covid in Jan/Feb. Might've been the flu. I was researching timing because I too was very sick in February.

[Anonymous]

My child was in the hospital for OVER a month when she was 10 -- completely unrelated but with stomach issues and no matter how much anti-nausea medicine she was given, she couldn't hold down anything solid AT ALL. They ran a battery of tests on her, it was the summer, but school was starting and we couldn't figure it out or get a doctor to sign off on a release (we could release but only against doctor's orders). I cannot even explain how many tests we did. Finally, as school was starting, we released her against doctor's orders since she could eat jello and a few other things (no vegetables) and hold it down. We were being provided insanely grim and scary possibilities. Then, we started just trying a few other foods and she was fine, and finally the doctor okayed us to eat more and more until she was on a normal diet.

That was 5 years ago. To this day, they cannot tell us what was wrong with her then.

Oh, and I gained A LOT of stress weight during those months -- so much. And, it was "nothing" according to the doctors. 5 years later, I never lost that weight.

My point is -- try to just stay sane, don't worry about a diagnosis (you may never get one) and just try to get life manageable as much as possible.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

[Anonymous]

OP, I am glad to hear your child is pain and fever free. Sometimes you don't get a clear diagnosis. Very frustrating.

[Anonymous]

Sounds like a tick infection. Takes weeks for body to generate antibodies if Lyme. There are many types of tick infections and symptoms are very similar to Covid.

[Anonymous]

Anonymous wrote:Sounds like a tick infection. Takes weeks for body to generate antibodies if Lyme. There are many types of tick infections and symptoms are very similar to Covid.

Also, the Lyme test is notoriously not good. This isn't a slap to any one dx company, it's just a hard bug to dx.

From a statnews.com story:
In the first three weeks after infection, the test only detects Lyme 29 to 40 percent of the time. (The test is 87 percent accurate once Lyme spreads to the neurological system, and 97 percent accurate for patients who develop Lyme arthritis).

[Anonymous]

Lyme is a terrible disease, I wanted to mention. I am suffering from the "left over" effects years later. To me, covid seems like Lyme on steroids. Having read what above pp posted about it spreading to neurological systems and being more accurate explains so much about my symptoms. I hope you son does not have Lyme, OP.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
I just want to note that it's perfectly possible your child has had Covid, and is now suffering from complications, but the tests are coming back negative because the infection itself has passed. I didn't see if they had tested for antibodies too, but all these tests can be negative and the patient can still suffer from Covid complications. It has happened before.

OP here, I 100% think my daughter, wife and myself had covid back in January/February my son did not get sick. I think this is MIS-C due to him having covid and being asymptotic. That said I think we will leave the hospital with no diagnosis. I had antibodies tested and they were negative months after the illness.

I hope you get good news soon, op. Just wanted to now that if you've been in the DC area, it's unlikely you had covid in Jan/Feb. Might've been the flu. I was researching timing because I too was very sick in February.

Wrong. Doctors think it was here in December.

[Anonymous]

Reading this update now and I’m glad that he is fever free.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
I just want to note that it's perfectly possible your child has had Covid, and is now suffering from complications, but the tests are coming back negative because the infection itself has passed. I didn't see if they had tested for antibodies too, but all these tests can be negative and the patient can still suffer from Covid complications. It has happened before.

OP here, I 100% think my daughter, wife and myself had covid back in January/February my son did not get sick. I think this is MIS-C due to him having covid and being asymptotic. That said I think we will leave the hospital with no diagnosis. I had antibodies tested and they were negative months after the illness.

I hope you get good news soon, op. Just wanted to now that if you've been in the DC area, it's unlikely you had covid in Jan/Feb. Might've been the flu. I was researching timing because I too was very sick in February.

Wrong. Doctors think it was here in December.

Agree. My old boss - very healthy guy that I have never known to be sick - traveled back from TX after Christmas. He started feeling bad on the flight, landed, went home and slept. Was still feeling bad the next morning. His wife went to run a couple of errands and within two hours he was have such trouble breathing she had to take him to the hospital. He spent a few days, was diagnosed with pneumonia and told to stay home for a week after his release from the hospital. He now thinks it could have been COVID. I am convinced it was.

[Anonymous]

DP. I never got tested for antibodies or anything. But, I took a flight within states in January. Week later I was sick. I had some antibiotics from before and I took them. It took me days to feel better but as I was on winter break I did not go to the doctor. Might do antibody test, just for fun.

[Anonymous]

In my country, in Eastern Europe, they do not rely on covid tests to diagnose it. Only on X-rays. Every one that has symptoms gets an x-ray. Mom asked me about DS (in college) what did hisx-ray say. His friend was positive and DS hadsome chest pains. I was like... nothing, what x ray, nobody even saw DS! It was more, take a test and if you think you are dying see a Dr. Test came negative so, now he ignores chest pains, thinks he is paranoid and it is anxiety.
Who knows how many people have lung damage and we have no idea?

[Anonymous]

Anonymous wrote:In my country, in Eastern Europe, they do not rely on covid tests to diagnose it. Only on X-rays. Every one that has symptoms gets an x-ray. Mom asked me about DS (in college) what did hisx-ray say. His friend was positive and DS hadsome chest pains. I was like... nothing, what x ray, nobody even saw DS! It was more, take a test and if you think you are dying see a Dr. Test came negative so, now he ignores chest pains, thinks he is paranoid and it is anxiety.
Who knows how many people have lung damage and we have no idea?

X-rays were what they seemed to be using in Wuhan too, and then they put too many people on ventilators as a result. Forgive me, but I have more faith in protocols improving after COVID swept through New York City, where some of the best clinicians and researchers on the planet reside. (No disrespect to Wuhan, which is also a wonderful, modern city.)

[Anonymous]

Anonymous wrote:

Anonymous wrote:In my country, in Eastern Europe, they do not rely on covid tests to diagnose it. Only on X-rays. Every one that has symptoms gets an x-ray. Mom asked me about DS (in college) what did hisx-ray say. His friend was positive and DS hadsome chest pains. I was like... nothing, what x ray, nobody even saw DS! It was more, take a test and if you think you are dying see a Dr. Test came negative so, now he ignores chest pains, thinks he is paranoid and it is anxiety.
Who knows how many people have lung damage and we have no idea?

X-rays were what they seemed to be using in Wuhan too, and then they put too many people on ventilators as a result. Forgive me, but I have more faith in protocols improving after COVID swept through New York City, where some of the best clinicians and researchers on the planet reside. (No disrespect to Wuhan, which is also a wonderful, modern city.)

They are not putting almost anyone on ventilators back in my country anymore either. In fact, for mild cases vitamins and possibly antibiotics are the treatment right now. Very few people have died there. LIkley as we don't have large hospice and retirement homes and elderly were isolated and had groceries delivered to them.

[Anonymous]

How's it going, OP? I've been thinking of you and your son. I hope he's doing well.