Interesting Info

[MMWG]

Met with our great pediatrician today for a consultation--we wanted to talk about whether we were doing all we could to manage his PANDAS. I won't go into detail about how much I adore our pediatrician, other than to say he is very responsive, open to my ideas and input, and always trusts me when I call and tell him something is up. We have developed the treatment plan together, and he never treats me like I am crazy. He has me tracking data on reactions and treatments so we can make sure we are doing what works best. He was the one who first diagnosed pandas when our son was just 4, and we thought our kid had lost his mind. With no fever, no sore throat, he looked at him, smelled his breath, and said, "I think he needs a strep test..."

 

Anyway. I wanted to pass on something interesting he shared with me today. He was discussing our son's case with a colleague at a conference who is one of the leading PANDAS experts. He was talking to her about how we rarely get a positive strep culture anymore, even when we are clearly seeing pandas symptoms, and asked for her thoughts on that. She told him that the current belief is that some PANDAS kids will react to incredibly miniscule amounts of "toxins" in their environment (toxins being any bacteria and likely viruses, in our case), and that once they sense the toxin, they can show neurological symptoms within minutes, hours, or days. She said it was like having an amazingly sensitive antennae--one that can pick up on things that other people don't notice and aren't affected by. If they are exposed and catch the bacteria, and then it is given time to develop, eventually it would show up on a culture (and in our case, if we let it go that long our kid would be in rough shape).

 

This confirms what I have felt all along. I describe it to people as almost an allergy--that if you were wearing a perfume I was allergic to, I would react then and there. It is the same way for our son with bacteria and viruses--it can happen out of nowhere. It is nice to have medical experts confirming what mommy has suspected for a long time!

[thereishope]

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Edited September 30, 2019 by Vickie

[blakes_mom]

We just experienced the same thing with our son.He was doing really well and was even on an antibiotic when we recently went back to his grandparents house.On the way home he started having his classic blinking tic and sure enough a few days later Grandpa was admitted to the hospital with a terrible blood infection.I really think they are really sensitive to bacteria around them.

[Sheila]

Bumping this up because it got lost due to a technical issue. Sorry blake's mom!