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

[Anonymous]

OP here, still has a fever. But walking better today, much less pain. They unhooked the IV for the afternoon so he could shower and get a break from it so he's very happy about that!! Lyme test came back negative. Thats all I have right now. Labs tomorrow am to see what the trend was over 48 hours with the antibiotics so we shall see. Thanks for all your kind words!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Could also be the initial portion of Juvenile Rheumatoid arthritis which is also very treatable. Sending you all the good vibes OP

Came here to say this sound a lot like how my JRA started around age 7 (and I got nearly all of my care at Childrens). I'm a healthy 35 y/o mother of two now, if it's any comfort!

This was my thought too. I have JRA (even as an adult, it’s considered JRA) and my daughter does too.

My son was diagnosed with Crohn's at age 6, but had few GI issues. He presented with joint problems and random fevers, plus a high CRP. We had to rule out JRA.

[Anonymous]

Anonymous wrote:I’ve been pretty calm but I’m starting to worry. He has a very high fever breaking through Advil and Tylenol, and ankle and knee pain making it hard for him to walk. We are in AA county in MD and they are transferring us to children’s in the am. Everything is coming up negative, covid/panels of respiratory viruses, MRI, chest X-ray, WBC count is normal but inflammatory markers are high. Awaiting Lyme and blood culture results in the am.

I’m not looking for a website diagnosis, I’m just worried and sleep deprived and never thought it would take this long to figure it out.

When my three year old couldn't walk well (pain in a leg), the pediatrician told me to take him for an x ray of his hip joint at a pediatric ER. Not a regular ER. Apparently kids can get a virus or a bacterial infection that settles in the joint. The bacterial kind (with a fever) is easy to treat but can damage the joint if not caught in time. Did they xray his knees and ankles?

[Anonymous]

Anonymous wrote:OP here, still has a fever. But walking better today, much less pain. They unhooked the IV for the afternoon so he could shower and get a break from it so he's very happy about that!! Lyme test came back negative. Thats all I have right now. Labs tomorrow am to see what the trend was over 48 hours with the antibiotics so we shall see. Thanks for all your kind words!

Glad to hear that your son is doing better, OP. Hopefully he continues to!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I’ve been pretty calm but I’m starting to worry. He has a very high fever breaking through Advil and Tylenol, and ankle and knee pain making it hard for him to walk. We are in AA county in MD and they are transferring us to children’s in the am. Everything is coming up negative, covid/panels of respiratory viruses, MRI, chest X-ray, WBC count is normal but inflammatory markers are high. Awaiting Lyme and blood culture results in the am.

I’m not looking for a website diagnosis, I’m just worried and sleep deprived and never thought it would take this long to figure it out.

Kawasaki is likely. DEMAND an infectious disease specialist. Have them do a daily check of both inflammatory markers and platelets. Steadily rising platelets is a key. You have ten days to diagnose and treat with immunoglobulin and avoid damage to blood vessels. PLEASE DEMAND TESTING FOR KAWASAKI through an infectious disease specialist.

My son had it at 5, he's now 19 and in perfect health.

What the heck kind of testing do you want for Kawasaki? It's a clinical diagnosis.

In addition to platelets, a high white blood cell count and the presence of anemia and inflammation are signs of Kawasaki. Testing for a substance called B-type natriuretic peptide (BNP) that's released when the heart is under stress may be helpful in diagnosing Kawasaki. (Source: Mayo, and also having a kid hospitalized for a related condition a few years ago, at Children's.)

But Kawasaki and a "Kawasaki like" disease are not the same. And I am not sure ankle and knee pain are typical of Kawasaki in any case...

Are youjust, like, googling "labs" and Kawasaki"?

"May be helpful" and "signs" are not the diagnostic criteria. Did you not know that? The diagnostic criteria are what you use to make the diagnosis, and they are clinical assessments. The labwork is not specific -- it is what shows up in any inflammatory process, which it looks broadly clear to everyone what is going on. But inflammation has a thousand other causes than Kawasaki Disease.

Please don't all-caps multiple times at a woman with a child in the hospital because she is not insisting on something which is not necessary or appropriate. She would make it worse by focusing on unhelpful suggestions and "demanding"/"DEMANDING" things which are going to make it harder for them to work with her. Well-trained pediatricians are more likely to make the diagnosis of Kawasaki, not infectious disease experts. I mean, it's good that the providers are consulting with a Peds ID doc, but honestly most KD is diagnosed and taken care of perfectly appropiately without an ID laying hands on the patient.

Why not encourage her to ask if Kawasaki has been considered, and if it has, whether it is still on the differential (or how it was ruled out)? That's a much more productive suggestion.

Glad your child is doing well. I know it is scary.

Hi again, you're responding to two different posters. I'm the second one. You may want to look up "clinical diagnostic tests." Take care.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here, still has a fever. But walking better today, much less pain. They unhooked the IV for the afternoon so he could shower and get a break from it so he's very happy about that!! Lyme test came back negative. Thats all I have right now. Labs tomorrow am to see what the trend was over 48 hours with the antibiotics so we shall see. Thanks for all your kind words!

Glad to hear that your son is doing better, OP. Hopefully he continues to!

Op, that's great news about the pain subsiding!

[Anonymous]

Anonymous wrote:OP here, still has a fever. But walking better today, much less pain. They unhooked the IV for the afternoon so he could shower and get a break from it so he's very happy about that!! Lyme test came back negative. Thats all I have right now. Labs tomorrow am to see what the trend was over 48 hours with the antibiotics so we shall see. Thanks for all your kind words!

I am glad to hear it. The care at Children’s is great, in my experience. I hope you get some answers soon!

[Anonymous]

Stay strong, OP and kid!

[Anonymous]

OP Great news! Thank you for updating. I hope you get more answers.

[Anonymous]

Anonymous wrote:OP here, still has a fever. But walking better today, much less pain. They unhooked the IV for the afternoon so he could shower and get a break from it so he's very happy about that!! Lyme test came back negative. Thats all I have right now. Labs tomorrow am to see what the trend was over 48 hours with the antibiotics so we shall see. Thanks for all your kind words!

I’m so glad he’s feeling better. I would really push for Children’s though. As a PSA to anyone in this position in the future: if you have a choice in this area and there is *any* chance it might be serious, go to Children’s.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here, still has a fever. But walking better today, much less pain. They unhooked the IV for the afternoon so he could shower and get a break from it so he's very happy about that!! Lyme test came back negative. Thats all I have right now. Labs tomorrow am to see what the trend was over 48 hours with the antibiotics so we shall see. Thanks for all your kind words!

I’m so glad he’s feeling better. I would really push for Children’s though. As a PSA to anyone in this position in the future: if you have a choice in this area and there is *any* chance it might be serious, go to Children’s.

I agree that a Children’s specialty hospital is a great idea, but wanted to add the Hopkins Children’s is another good choice.

OP, as the parent of a child with a rare autoinflammotory syndrome, I would want a pediatric rheumatologist consulting, either remotely or in person. If you aren’t mentioning a rash or fevers that come and go, your kid probably doesn’t have my kid’s exact diagnosis but it does sound like the bigger family of auto immune or auto inflammatory disorders.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I’ve been pretty calm but I’m starting to worry. He has a very high fever breaking through Advil and Tylenol, and ankle and knee pain making it hard for him to walk. We are in AA county in MD and they are transferring us to children’s in the am. Everything is coming up negative, covid/panels of respiratory viruses, MRI, chest X-ray, WBC count is normal but inflammatory markers are high. Awaiting Lyme and blood culture results in the am.

I’m not looking for a website diagnosis, I’m just worried and sleep deprived and never thought it would take this long to figure it out.

Kawasaki is likely. DEMAND an infectious disease specialist. Have them do a daily check of both inflammatory markers and platelets. Steadily rising platelets is a key. You have ten days to diagnose and treat with immunoglobulin and avoid damage to blood vessels. PLEASE DEMAND TESTING FOR KAWASAKI through an infectious disease specialist.

My son had it at 5, he's now 19 and in perfect health.

What the heck kind of testing do you want for Kawasaki? It's a clinical diagnosis.

In addition to platelets, a high white blood cell count and the presence of anemia and inflammation are signs of Kawasaki. Testing for a substance called B-type natriuretic peptide (BNP) that's released when the heart is under stress may be helpful in diagnosing Kawasaki. (Source: Mayo, and also having a kid hospitalized for a related condition a few years ago, at Children's.)

But Kawasaki and a "Kawasaki like" disease are not the same. And I am not sure ankle and knee pain are typical of Kawasaki in any case...

Are youjust, like, googling "labs" and Kawasaki"?

"May be helpful" and "signs" are not the diagnostic criteria. Did you not know that? The diagnostic criteria are what you use to make the diagnosis, and they are clinical assessments. The labwork is not specific -- it is what shows up in any inflammatory process, which it looks broadly clear to everyone what is going on. But inflammation has a thousand other causes than Kawasaki Disease.

Please don't all-caps multiple times at a woman with a child in the hospital because she is not insisting on something which is not necessary or appropriate. She would make it worse by focusing on unhelpful suggestions and "demanding"/"DEMANDING" things which are going to make it harder for them to work with her. Well-trained pediatricians are more likely to make the diagnosis of Kawasaki, not infectious disease experts. I mean, it's good that the providers are consulting with a Peds ID doc, but honestly most KD is diagnosed and taken care of perfectly appropiately without an ID laying hands on the patient.

Why not encourage her to ask if Kawasaki has been considered, and if it has, whether it is still on the differential (or how it was ruled out)? That's a much more productive suggestion.

Glad your child is doing well. I know it is scary.

Hi again, you're responding to two different posters. I'm the second one. You may want to look up "clinical diagnostic tests." Take care.

Because random clinical diagnostic tests are going to be relevant how, exactly? That is pure silliness.

"There's no specific test available to diagnose Kawasaki disease."
https://www.mayoclinic.org/diseases-conditions/kawasaki-disease/diagnosis-treatment/drc-20354603

In the very link you seemed to use, this is made clear. It's also made clear that BNP "may be helpful in diagnosing Kawasaki disease. However, more research is needed to confirm this finding," but of course you left that out. Please don't "demand" this test.

It is a diagnosis of exclusion made on physical exam findings, not lab tests. I suppose you might want to look up what that means. Lab tests are not all that helpful, and they certainly do not make the diagnosis.

This is diverging from OP's topic. If you want to discuss it, there is a new thread here:
https://www.dcurbanmom.com/jforum/posts/list/90/911190.page

Yes, you take care, too.

[Anonymous]

Thanks for the updates, OP. You and your son are in my prayers!

[Anonymous]

Parvovirus in adolescents and adults is more severe than in preschoolers. It stole 5 months of my life.

[Anonymous]

Hey OP, hope he continues to do better today! Keep us posted when you can.