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pandas can be cured only if it's treated early?


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Honestly - I dont know wich infektion was treated. Any I would say.

 

he started with IVIG right after diagnosis; and got his first Augmentin 2 weeks before IVIG, and continued for the next 16 month. I increase the dose of augmentin when he's in a flare, up to 2x1000 mg daily; but with no sucsess. I even ask his doc (dr. K) about changing abx, but he said no.

so, he is taking augemtnin profilactic, but, again, as I said, with no help.Don't know why, when it's obvius they aren't helping any more, but I can not take him off abx - too affraid to do it whiteout doc's blessing

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If augmentin isn't working, it must not be addressing the infection properly. Or addressing the proper infection. You can't do this without a doctor, and I am not suggesting that you try this on your own.

 

Is your doctor versed in Lyme and coinfections? Several children here that haven't improved with IVIG and treatment for strep have been found to have other underlying infections, that if not properly tested for or clinically diagnosed, will go unidentified.

 

We found monotherapy to work in the beginning, but that didn't last long. Are there any doctors in your area with ILADS (International Lyme and Associated Diseases Society) affiliations who can do some testing for coinfections? Contact ILADS and they may be able to give you a recommendation.

 

Most lyme and coinfections treatment involves much more than simply taking 1 antibiotic and using IVIG. This may be helpful for resolving an autoimmune response to strep, but it will not work if lyme/coinfections are involved.

 

If what you are doing is not producing results, you need to investigate further.

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This doctor's comments are RIDICULOUS!! Parents should not be discouraged because this board is not littered daily with success stories. This is where parents and adults come for help. PANS is not a quick or easy fix. Parents move on from this place because their kids are well and managing life. You can search success or victory if you need reinforcement of your resolve. Keep searching and fighting until YOU are satisfied your child is the best they can be.

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thank You all..everytime I think I will find a solution something happens..

 

Today, unfortunatly, my younger non pandas son,sweet 2 yo; just got a scarlet fever..I can not be more sad than I am right now..

 

offcourse, my older pandas child reacted with a worsening

 

.maybe I should write a new post about asking how long do I keep my younger on abx to make shure the strep is gone..I post something about ping pong strep, and I was definitly not mistaking (:

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  • 2 years later...

Hi Kimballot!

I'm Mike B and I seem to be having a very similar problem to the ones your son faced around 2 years ago. I'm in pretty bad shape and would love to ask you some questions just to help me with my current issues. I'm gonna message you directly and hope you respond lol, thanks!

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