Thinking of you op. You’re a great mom!

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.

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...

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.

Anonymous wrote:OP just a note that something similar happened to a family we are friends with - the dad is a pediatrician, also - daughter basically limped strongly for months, off and on fever. It's been years now and it ultimately resolved - they never found out what it was but she is totally fine and it was likely some sort of viral infection that worked itself out. Sending love to you and your son!

Sorry I should clarify that it's been years since it happened, not that it went on for years.

OP just a note that something similar happened to a family we are friends with - the dad is a pediatrician, also - daughter basically limped strongly for months, off and on fever. It's been years now and it ultimately resolved - they never found out what it was but she is totally fine and it was likely some sort of viral infection that worked itself out. Sending love to you and your son!

OP, I would push for Children's in your shoes. Thinking of you and hope he is diagnosed and feeling better soon!

Anonymous wrote:

Anonymous wrote:
PP from above. My DD had first Familial Mediterranean Fever episode at 14. They now say 90% of patients have their first episode before age 20.

OK. In my daughter symptoms started when she was a baby and the doctor said she would probably outgrow it, so I thought that would be the case with others as well. I see though that only about 65% have onset of symptoms before the age of 10. Abdominal pain is prevalent in 95% of cases though which OP didn't mention.

PP here again. Sort of surprised doctors would say she would outgrow it, but that is usually true of another, very similar, periodic fever syndrome, which is always the better diagnosis (PFAPA) for that reason. I did say stomach pain is frequent. The percentage of abdominal pain occurring in at least one of many episodes is probably that high, but my DD has had it very infrequently and it came later in the course of her disease.

Thinking of you guys today, OP. Hope you were able to get some sleep here and there.

OP, if I were you, I'd push for going to Children's ASAP. They are just so good there in so many ways. From what I understand, you are not there?

Thinking of you and your son, OP.

OP - I’m late to the game and haven’t read the whole thread, but DD has Lyme and had knee inflammation (to the point where she couldn’t walk) and fever. We had 2 nights in the hospital too. Hoping that’s “all” it is because it was easy to treat

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.

I'm sorry. Something very similar happened to my nephew a few years ago. It was lyme. He was fine after antibiotics. Thinking of you and sending you best wishes. xx.

Anonymous wrote:
PP from above. My DD had first Familial Mediterranean Fever episode at 14. They now say 90% of patients have their first episode before age 20.

OK. In my daughter symptoms started when she was a baby and the doctor said she would probably outgrow it, so I thought that would be the case with others as well. I see though that only about 65% have onset of symptoms before the age of 10. Abdominal pain is prevalent in 95% of cases though which OP didn't mention.

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.