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We've had a resurgence of PANDAS symptoms (the really bad ones) and I called the pediatrician Monday. My daughter's doctor (no use taking her to anyone else in the practice) was booked for the day and out the rest of the week. But, they gave him a message and he agreed to prescribe the rifampin/augmentin and prednisone, once we got labs done- this stuff is hard on the liver, so he wants to make sure her liver is doing okay before her puts her on them. So, he leaves the order with his nurse, we get the blood draw and the labs come back good....

But, in order to call in the rx, the nurse needs to get a physician (anyone at the office can do it and there are at least 5) to sign off on it. None of her pediatrician's associates will sign off on those meds, even with the pediatrician's notes. So, we'll have to wait until Monday when he's back to start treating her. She's getting worse everyday, and I'm in for a bad weekend! Pray for me!

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Sorry, Peg! I'm sure many of us can relate/empathize, but that doesn't necessarily make your going any easier, does it?! <_<

 

I have the same situation with my pediatrician, but I think the nurse has finally gotten a clue. Now when I call, they don't even try routing me to anyone else. They just know I have to talk directly with the ped because no one else is going to understand or "go along with the program." :angry:

 

Lots of cyber-hugs for the rest of this week and the weekend. Take at least one each day! :wub:

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The thing is, I don't really blame the other pediatricians (much), it definitely is not routine treatment and they don't have the big picture. But, her pediatrician plays it very safe and before we ever did this treatment, while we were there in the exam room he called 3 specialists at the children's hospital to make sure it would be safe. There is no way he would okay this treatment unless he was sure the need was worth the risk. He was trying to not leave us hanging just because he wasn't able to see her. And he has come to trust my judgment enough to know that I know what I'm talking about. Oh, well, I did this crap for solid years- 5 days (that seem like a month)is not huge, but wish Allie didn't have to do this five more days. And its not like I can just take this kid to urgent care or the emergency room!

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Maybe just a ramp up because of something but since she has been doing so good won't last that long? I hope. Completely understand about the offices and trying to get through to the docs. Is there anyway they can just contact him long enough for him to call it in himself.

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Maybe just a ramp up because of something but since she has been doing so good won't last that long? I hope. Completely understand about the offices and trying to get through to the docs. Is there anyway they can just contact him long enough for him to call it in himself.

No, this has been building for a couple weeks and I was waiting and hoping it was just a passing blip. I waited until I was sure it was more than that before I called the doc. The office is closed right now- but I don't think they'll contact him, because none of them understand how dire it is.

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Maybe just a ramp up because of something but since she has been doing so good won't last that long? I hope. Completely understand about the offices and trying to get through to the docs. Is there anyway they can just contact him long enough for him to call it in himself.

No, this has been building for a couple weeks and I was waiting and hoping it was just a passing blip. I waited until I was sure it was more than that before I called the doc. The office is closed right now- but I don't think they'll contact him, because none of them understand how dire it is.

 

 

Oh I see, I am sorry you have to deal with this. Seems so unfair.

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We've had a resurgence of PANDAS symptoms (the really bad ones) and I called the pediatrician Monday. My daughter's doctor (no use taking her to anyone else in the practice) was booked for the day and out the rest of the week. But, they gave him a message and he agreed to prescribe the rifampin/augmentin and prednisone, once we got labs done- this stuff is hard on the liver, so he wants to make sure her liver is doing okay before her puts her on them. So, he leaves the order with his nurse, we get the blood draw and the labs come back good....

But, in order to call in the rx, the nurse needs to get a physician (anyone at the office can do it and there are at least 5) to sign off on it. None of her pediatrician's associates will sign off on those meds, even with the pediatrician's notes. So, we'll have to wait until Monday when he's back to start treating her. She's getting worse everyday, and I'm in for a bad weekend! Pray for me!

I would be so mad! How can they do that? I think I would just bring up the words "law-suit" or "malpractice" and see what kind of reaction I get ;) I think leaving someone with positive bloodwork untreated over the weekend is criminal! I know you didn't ask for advise, but I would insist.

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I am curious - what are her worst symptoms? What are you experiencing now?

 

It is so hard. You are in my thoughts and prayers. Remember to try Motrin.

Her worst symptoms are self injurious fight or flight rages, sprinkled with aggression towards caregivers. Also, she is having periods of 1/2 hour- 1hour whiney/screamy/heartbreaking sobbing, which I think I like even less than the F or F stuff. Yes, motrin every 4 hours.

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We've had a resurgence of PANDAS symptoms (the really bad ones) and I called the pediatrician Monday. My daughter's doctor (no use taking her to anyone else in the practice) was booked for the day and out the rest of the week. But, they gave him a message and he agreed to prescribe the rifampin/augmentin and prednisone, once we got labs done- this stuff is hard on the liver, so he wants to make sure her liver is doing okay before her puts her on them. So, he leaves the order with his nurse, we get the blood draw and the labs come back good....

But, in order to call in the rx, the nurse needs to get a physician (anyone at the office can do it and there are at least 5) to sign off on it. None of her pediatrician's associates will sign off on those meds, even with the pediatrician's notes. So, we'll have to wait until Monday when he's back to start treating her. She's getting worse everyday, and I'm in for a bad weekend! Pray for me!

I would be so mad! How can they do that? I think I would just bring up the words "law-suit" or "malpractice" and see what kind of reaction I get ;) I think leaving someone with positive bloodwork untreated over the weekend is criminal! I know you didn't ask for advise, but I would insist.

Oh, no, no, the labs were only ordered to check liver and kidney function and to rule out thyroid problems- to make sure it would be safe to use the rx. She did not have positive labs for illness (actually the opposite). Since we are on IVIG every 4 weeks+ zithromax, its really not possible to get reliable "check for disease" labs. And really, I so appreciate that her pediatrician has been so willing to do what it takes to treat her (even though his colleagues do not approve) I would never, ever sue or even threaten to sue.

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When is her next ivig??

We've had a resurgence of PANDAS symptoms (the really bad ones) and I called the pediatrician Monday. My daughter's doctor (no use taking her to anyone else in the practice) was booked for the day and out the rest of the week. But, they gave him a message and he agreed to prescribe the rifampin/augmentin and prednisone, once we got labs done- this stuff is hard on the liver, so he wants to make sure her liver is doing okay before her puts her on them. So, he leaves the order with his nurse, we get the blood draw and the labs come back good....

But, in order to call in the rx, the nurse needs to get a physician (anyone at the office can do it and there are at least 5) to sign off on it. None of her pediatrician's associates will sign off on those meds, even with the pediatrician's notes. So, we'll have to wait until Monday when he's back to start treating her. She's getting worse everyday, and I'm in for a bad weekend! Pray for me!

I would be so mad! How can they do that? I think I would just bring up the words "law-suit" or "malpractice" and see what kind of reaction I get ;) I think leaving someone with positive bloodwork untreated over the weekend is criminal! I know you didn't ask for advise, but I would insist.

Oh, no, no, the labs were only ordered to check liver and kidney function and to rule out thyroid problems- to make sure it would be safe to use the rx. She did not have positive labs for illness (actually the opposite). Since we are on IVIG every 4 weeks+ zithromax, its really not possible to get reliable "check for disease" labs. And really, I so appreciate that her pediatrician has been so willing to do what it takes to treat her (even though his colleagues do not approve) I would never, ever sue or even threaten to sue.

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