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amother
Cobalt
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 Tue, May 17 2022, 3:35 pm
OP you will need a lot more than 10 days of antibiotics or pandas. Here are some ideas for how to get more:
Beg dr Shanik or someone at his office for 30 days with refills.
Try PA Beren, he is pandas literate and usually very accommodating with prescribing 30 days of abx at a time, sometimes with refills, but you need to present it the right way.
I know someone whose kid was being treated for pandas with long term abx by dr fenster, so may be worth a try seeing if you can get into him.
You can try one of these virtual telehealth places, or some mail order place where you don’t need an rx.
You can try otc herbal antibiotics like biocidin, olive leaf extract and oil of oregano, we’ve personally seen success with these.
If you are willing to pay $$$ you can see a pandas specialist in the area like dr trifiletti, dr Bock, dr. Frid, dr Elice, dr de Antonio, dr neubrander
You can try dr jyonouchi in New Brunswick, she takes insurance but isn’t a fan of long term abx, she does more ivig.
Also, until you’re able to get her back on some kind of antimicrobial, you can do motrin, Benadryl (or zyrtec/claritin) and robitussin around the clock to temporarily control the inflammation.
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amother
Cobalt
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Wed, May 18 2022, 3:53 pm
| amother [ OP ] wrote: | Thank you for all thay information wow!
We went to dr shanik (saw him) explained the situation and he prescribed another 30 days of antibiotics.
I'm just wondering is this healthy? I know she needs its but its sounds scary to be on antibiotics so long. Also what happens after day 30? I dont want to get my hopes high but will she be a changed kid after ? Seems unrealistic and like a dream. But if shes the same then whats the point and then what's the next step. Wow this is confusing. Thanks everyone for taking the time to respond | Long term antibiotics can’t be called “healthy”, but neither is a steady immune assault on the basal ganglia in the brain, aka pandas, so it’s a pick your poison kind of situation, and personally I pick long term antibiotics. Saying this as someone who is as “crunchy” as they come and was very ideologically opposed to antibiotics for a very long time.
There is also the option to address it holistically using herbs, diet and supplements but you need extensive knowledge and resources to do it this way, which most of us don’t have.
In terms of how long it’s going to take, chances are 30 days won’t either be enough. My kids have been on antibiotics for months at a time, and there are kids who take it for years.
Honestly though, it most cases it ends up being a bandaid and a roller coaster you can’t get off of. For deeper healing to happen, you will also need to address the immune dysregulation, in other words, teach her immune system to react to strep in normal ways and not mistakenly attack the brain. This is usually done using ivig, LDN, and other immunomodulators. And even deeper, the *why* for the immune dysregulation, which can have many reasons but often starts in the gut. Which is done via diet, ferments, probiotics, minerals and fat soluble vitamins.
Also important to address any other infections that may be going on, most kids have more than one, and other sources of inflammation such as mold, allergies and sensitivities.
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