Ped won't test for strep

[FLmom]

Aargh...the same pediatrician who wouldn't prescribe the antibiotics Dr. K recommended, now won't test my children for strep as recommended by Dr. Murphy. When we saw Dr. Murphy a few weeks ago, she wanted all of us to be tested for strep. Tuesday my two older ones had a nurse apt. for a follow up vaccine. When we got there I asked the nurse if she could run a strep test on them. She spoke with the doctor who refused. Her reasoning is that it is bad medicine. She said the doctor would like me to make an apt to sit down and talk with her and 'listen' to her reasons for not believing in this. If I wasn't so unarticulate, I would go and talk to her and try to persuade her, but I feel I'd just sit there not knowing what to say. I printed out Dr. Murphy's bio, with all her studies, and gave it to the nurse to give to her. This doctor supposedly researched Dr. K and said he was 'alternative' so she didn't agree with him. I can't imagine her going against Dr. Murphy with all her credentials.

 

I actually just got a voice mail from the nurse at the peds office and wants to" touch base with me on "Ms. Tanya Murphy". Seriously?! Ms??! I'm very hesitant to call back. From that statement, it seems she wasn't swayed.

[airial95]

Where in Florida are you? I find it very odd that they are discounting Dr. Murphy out of hand. It's not like USF is a slouch of a medical institution or anything.

 

I am in Tampa, and know there are a couple PANDAS friendly pediatricians here - but then, we are in Murphy's backyard, so that might account for some of it.

 

In the meantime, have you considered taking your kids into a walk-in clinic to get tested? Just tell them that they are complaining of a sore throat and you know strep has been going around their school.

[4Nikki]

http://www.walgreens.com/topic/pharmacy/healthcare-clinic/price-menu.jsp

http://www.amazon.com/Rapid-Response-Strep-A-STR-15S25-Strips/dp/B001DD04SQ

 

Since when is it bad medicine to test for a suspected infection? I would ask the doctor to refuse to run the test in writing. Perhaps it would get her to think a little more about what she is telling her nurse to say to you.

 

Process of elimination is not bad medicine or bad troubleshooting. It helps to narrow down the suspected culprates. If the doctors knew everything on exactly how the body worked they wouldn't have to guess. Doctor's that claim to know everything are either fooling themselves or are trying to fool you.

 

DD was experiencing a series of bad flares, it was the first time we noticed her throat, and it was inflamed, we went to the doctors office the next day and her throat was no longer inflamed but insisted on a titer test which came back positive. I don't know if DD has PANDAS/PANS and hasn't been confirmed nor has it been taken out of the diagnosis pool. I don't care what the illness is called, I only care that it can be treated to help DD.

[PowPow]

you need to dump that pediatrician. Even not from solely a pandas standpoint. I like the idea of getting that refusal in writing!

[FLmom]

I did consider the walk-in clinic, but I think I am just too honest to a fault. I hate to lie about their throats being sore infront of my kids. I'm not above doing that for myself though since I need to be tested too.

 

So Amazon sells home test kits? I take it that is just the rapid response and there is not a way to culture the sample? I guess it is better than nothing, but if it is negative I still wouldn't know if the culture would have come back positive.

[911RN]

I did consider the walk-in clinic, but I think I am just too honest to a fault. I hate to lie about their throats being sore infront of my kids. I'm not above doing that for myself though since I need to be tested too.

 

So Amazon sells home test kits? I take it that is just the rapid response and there is not a way to culture the sample? I guess it is better than nothing, but if it is negative I still wouldn't know if the culture would have come back positive.

Tests are very accurate as long as you get good sample. Would be a good place to start if you want a baseline.

[nicklemama]

I second the recommendation to tell the ped you want her refusal and why in writing. If she only knew Dr K, she'd know he is well removed from any notion of being alternative.

 

Go to the walk in clinic and be honest at Walgreens. Take documentation with you. Call ahead and speak to someone.

 

I am reluctant to say dump your ped to most who come here. There's always a chance of educating him/her. I think you have no chance and you need to leave this ped practice and find someone PANDAS friendly. My own ped is no PANDAS friendly doc but she will and has ran tests Dr T recommended, even if she knew she wasn't going to treat.

 

It's not in my nature to be pushy to doctors. After four years of this PANDAS baloney, you can believe I can and will be pushy. You will have to wrap your mind around this.

[Hopeny]

Personally I would stop talking with them and find another pediatrician and use a walk in clinic in the meantime. There have been cases with at least Lyme that I know of where parents were reported to children's services for suspicion of munchausen by proxy (I find this ironic as it is so much more obscure and rare than Lyme or pandas yet somehow that's the dx) so IMO if you are sensing some resistance it can be better to seek care from specialists that are experienced and treat pandas. My current and previous practice (we moved) included

[philamom]

Please, I have been around this way too long to have any respect for a doctor that would shut you down like that. Find a new doctor.

 

As for walk in clinics, I tell the clinician that at times my dd gets strep with no sore throat, only stomach complaints (sometimes minor - which is true). I don't even mention the pandas symptoms. That way I don't get my daughter too involved in conversation. Never had any problems getting a culture.

 

I agree with nicklemama- Unfortunately, you may need to be pushy at times. I no longer ask doctors what should be done, I tell them what I want done. Yikes, my blood pressure is rising. These are our children. A simple culture. arrgh

[philamom]

Have heard discussion in the past of muchausen in our situation. Not childrens services but school district. Somatization worded in IEP. This was with elevated d-nase tests (600), positive lyme culture with picture of spirochetes in blood sample, positive Igenex, positive quest bartonella, extremely elevated sed rate, positive ana, and many other abnormal labs. Crazy.

 

edit- tried to directly reply to hopeny's post but unable.

Edited December 20, 2013 by philamom

[JoyBop]

I agree. Time to move on! You are not going to be able to convince this doctor anything and he obviously doesn't have an open mind. I also done think that doc will take the time to write you a letter. Many docs charge these days for letters written and in sure he's not going to want to put anything in writing that could be held against him later. When you think about it, if you are able to go elsewhere and prove your child had a strep infection , and you have a letter stating you had asked for testing and he denied, he could actually get in trouble. I wouldn't waste anymore time.

 

I know a bit about behind the scenes medicine and can tell you that some insurance cos won't pay for the strep test without documentation if certain criteria. Maybe he doesn't want to not get paid? You could offer to pay out of pocket but I doubt that would fly either. I'm MA medicade won't pay for a rapid PERIOD!! They have to do the culture and make the kid wait several days before treating. I'm sure obamacare will follow that policy.

[3bmom]

Every time, usually my brother, one of us 4 kids got strep we all had to get a shot of penicillin. This was in the 60's, yikes showing my age. I don't know if this was standard protocol along with removal of tonsils being the norm but strep was always taken seriously.

Maybe these changes are part of the problem.

 

That being said change I would change pediatricians. First of all a negative culture DOES NOT mean you don't have strep. A lot of our kids can be asymptomatic due to a dysfunctional immune system. Strep can hide behind tonsils, in the sinuses, vagina etc. You might miss a diagnose due to their ignorance and never get a clear picture.

 

I just had my non PANDAS college age son's blood work done because he look tired and very pale, a clue for me. I saw him at Thanksgiving and he had been sick but felt better. His girlfriend got sick from him but had strep and was put on antibiotics. I thought Hmmmm. I need to be sure before he comes home and is near my DS.

 

Throat culture, sinus culture negative, ASO 770. He is starting antibiotics immediately before he comes home for Christmas.

Today my PANDAS DS will go for to double check because they were together at Thanksgiving. I had just said to my husband my DS is looking tired, dark circles and pale plus a little grumpy, fighting curfew and has become disorganized despite trying. Clues for us the immune system is revved up. He is on prophylactic abx but also just got his wisdom teeth out before thanksgiving which they informed me is a heavy bacterial load. I don't take chances.

 

We need definitive answers or we become a dog chasing its tail. Your pediatrician won't be able to help and its exhausting trying to educate.

 

In the beginning I did use walk in clinics for siblings cultures. I just told him we have rheumatic fever in the home and need to check. PANDAS is rheumatic fever of the brain...wish we didn't give it a cute name, so you won't be lying. In our case the only positive culture was his first exacerbation.

 

On a side note the National Pediatrics Association in November in Florida unanimously voted to accept PANDAS/PANS. When or how this becomes mainstream IDK. Good Luck.

[Hopeny]

Btw to add I just couch our issues if I need to go outside the circle as chronic strep, no one seems to have any issues with that positioning, and no one has ever gotten in a tizzy when I put it that way.

[philamom]

Agree about the negative culture not ruling out strep. With all the years I've been dealing with this, at only one time did it come back positive (positive for a few months- even after treatment). That was almost 8 years ago. Before I really knew much about pandas. She had impetigo a few months prior, and it was never brought to my attention that impetigo is strep related. What I have noticed in our case though, for the last few years, is the rise of d-nase b and sed rate with strep infections. ASO has never been elevated. Also, whenever my daughter's d-nase titers become elevated, my moms titers become elevated too - they must ping pong it.

[FLmom]

The nurse called back and this time I answered...went better than I expected. She said she gave the doctor the paperwork on Dr. Murphy, and she knew who she was and highly respects her and feels she is one of the few in this area that knows how to sort out Pandas. But she wants to get Dr. Murphy's notes sent to her with the request to check the siblings before she tests. So I'll get to work on getting that to her.