Alternative fever response theory

[peglem]

Okay, read through this thread, but still....What exactly is this theory?

[butterflymom]

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Edited October 5, 2015 by tampicc

[peglem]

I think he mentions it in his recent videos, if you feel like watching again. I think it is that the 'PANDAS syndrome/ symptom set' is what happens to our kids in reaction to a bacterial infection. Rather than get a typical fever, they get the PANDAS symptoms? And since the response isn't typical, parents/docs don't know the infection needs to be treated with antibiotics. Not that they don't get a fever ever. My child does occasionally, but generally doesn't with most illnesses. I do notice his friends have fevers more often with run-of-the mill viruses that go around. Not sure if this is right. Someone please correct me.

 

From PANDAS network site:

 

Dr. Rosario Trifiletti and parent Maggie Glynn are interviewed by “Kids First‘” Dr. Rosalie Greenberg, M.D. in two new videos about PANDAS.

 

The first video, PANDAS 1, discusses an overview of the disorder and a parent’s perspective.

 

The second video, PANDAS 2, discusses the controversies surrounding the disorder and further in depth explanation of the autoimmune disorder. In this video, Dr. Trifiletti estimates 1-2% of children have PANDAS.

 

http://origin.peg.tv/pegtv_player?id=T00331&video=44652

 

http://origin.peg.tv/pegtv_player?id=T00331&video=44654

Thank you! So, just sorta thinking out loud...My understanding is that Dr.T thinks that instead of producing the normal immune response to infection (which, ultimately, helps the body get rid of it), PANDAS kids immune systems do respond w/ antibodies to fight the infection, but do not keep the cross reactive ones in check? And also, w/o the normal immune response, the body does not fight the infection as effectively and parents/doctors miss the infection (which may go chronic) so the child doesn't get treatment.

So, where does the low histamine piece fit into that? Is that where the typical symptoms (fever, etc)are not being triggered by histamine?

[AmySLP]

Jill,

No fevers here in my 7 year old when she was 4 and had strep for 6 months every 3 weeks! And, I got the SLP humor from the start!

 

Amy

[mkur]

The only way our doc knew to test for strep initially was the smell of his breath and his crazed behavior. No fever, no sore throat.

You're the second person to mentioned smelling for strep. My SIL does this too. I wonder why there is no "smell" test on the market. It would be more accurate because you wouldn't have to touch the strep directly. If it was hiding in a pocket it could be detected.

[mkur]

My son has a "delayed" fever response. His first signs to strep are - vomiting (looks like stomach flu), swollen gland behind ear, sore throat, looks sick (very pale with dark circles under his eyes) and acts sick (very tired - very quiet - not moving - says he hurts but not sure where). He will run a fever after a couple of days. He had scarlet fever when he was four. When he was five and before pandas hit at seven, the ped would get mad at me when I would request strep tests - would lecture me about unnecessary tests etc. My son has always had a problem with strep and sinuses. I didn't find out about pandas until he was eight - 1 yr after pandas hit him in 1997. Also my ds does get high titers (500-990). I've never seen them normal but we don't test regularly.

 

He fits the pandas dx perfectly - sudden onset, etc. So what does that make him?