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I am posting this in desperation.....our Ped. is NOT on board. He thinks that we aren't dealing with PANDAS because we didn't have a positive strep connection and essentially got our diagnosis/treatment via email/phone consultation. All bloodwork and symptoms are consistent with PANDAS and we have already been dx by a PANDAS Specialist. Our pediatrician thinks we could have a psych issue (schizophrenic or bipolar). I am not sure how that is a possibility at the age of 5 and her symptoms were sudden and have slowly gotten better. He wants to refer us to a Children's Hospital to have a "team" evaluate her for everything from psych, GI, Immunology, Infectious Disease, etc. Almost all of her symptoms have gotten better, esp. while on abx, steroids, however he is persisting to get this work up done. I feel that it is NOT necessary as we are almost back to her normal self. We are also going to another PANDAS specialist next week for a second opinion. My question to everyone is - can we get in "trouble" for not following our pediatricians suggestions/referral? Is this a State by State issue? I am distressed by all of this and not sure what to do. If ANYONE could give me some advice, I would really appreciate it. Thanks and God Bless......

Edited by Ataloss12
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ataloss-

 

I would change pediatricians. To be honest, this is over most of their heads.

 

Starting with a new pediatrician puts you on a stronger footing. We moved after pandas diagnosis and treatment had begun. I just brought some paperwork that stated diagnosis, told the pediatrician that my kids have pandas, and that it is handled by our neurologist, who I told them we see regularly. I do not consult the ped on anything regarding pandas. We go to them for sick visits and yearly physicals (skipped last years!). They admittedly do not know much about pandas, have been mildly interested, and supportive.

 

Good luck!

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So sorry you are going through this. You ped is ignorant- walk away from the practice, don't worry about getting in trouble,it is a non issue. What state are you in? Which PANDAS docs are you seeing? Hopefully you can find a local ped that is PANDAS friendly . There are lists on Saving Sammy/Beth Maloney's site as well as on PANDAS Network. BTW- you don't need a Strep connection. Perhaps you can share some info with your ped when you leave...the white paper ...there is lots to print out and leave with them. Also,get a copy of your childs medical records ,you need to start a folder.

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I am in a similar situation looking for a pediatrican who will be flexible. I think DCmoms approach is smart and what I plan to do. DD got stitches this week and we had to go to Ped for a wound check, have not gone back in months for anything since I realized it was fruitless to see them. Ped started asking me questions about why DD was already on ABX and I said "she has Lyme and a number of other infections, including strep infections which caused severe psychiatric symptoms. She is being treated by an immunologist Dr. B. and I will discuss another time if you are interested." ER doc asked me the same and I gave her a similar response. I do however agree that it is a good idea to have some testing done to evaluate other possible causes. When we got the Lyme dx I first got DD tested by a Lyme friendly pediatric infectious disease doc. (in NY if this helps I will PM you) This uncovered her elevated strep titer along with some other conditions that need treating, helping put more pieces of the puzzle together. It also importantly helped us rule out some other possible issues, Lupus, Thyroid etc - thank goodness for some positive news! My more conventional infectious diease doc cousin read me similar riot act as your ped and suggested the same, specifically that I go to Mayo clinic and have DD tested head to toe, so I dutifuly went on said website and looked at list of the hundreds of conditions they treat - had a good long laugh (maybe I should have cried) when I clicked on L and found Lyme Disease is not even listed. Unfortunately, what I have found is that most people are close minded until something like this happens to them or someone they love. If their happy, normal child suddenly became suicidal and has so much leg pain that they cannot sit on the floor, or whatever the case is, I would bet they would pursue all avenues to help restore their child's health. Had I listened to conventional doc/ped, DD8 would be on painkillers and the way we were going in a psych hospital.

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I'm going to put a different opinion out there but if it were me, I would do that workup just to have a clear mind that nothing else is there. I would have welcomed that when our problems started. Then if he is still being stubborn I would find a different pediatrician ASAP.

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You could go ahead with the work-up and again my find other important/relevant info. in the process, as long as it does not cost you too much out of pocket. I just would be weary if they start trying to prescribe any anti psych meds. I would definitely follow the recommendations of your pandas docs though.

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I am posting this in desperation.....our Ped. is NOT on board. He thinks that we aren't dealing with PANDAS because we didn't have a positive strep connection and essentially got our diagnosis/treatment via email/phone consultation. All bloodwork and symptoms are consistent with PANDAS and we have already been dx by a PANDAS Specialist. Our pediatrician thinks we could have a psych issue (schizophrenic or bipolar). I am not sure how that is a possibility at the age of 5 and her symptoms were sudden and have slowly gotten better. He wants to refer us to a Children's Hospital to have a "team" evaluate her for everything from psych, GI, Immunology, Infectious Disease, etc. Almost all of her symptoms have gotten better, esp. while on abx, steroids, however he is persisting to get this work up done. I feel that it is NOT necessary as we are almost back to her normal self. We are also going to another PANDAS specialist next week for a second opinion. My question to everyone is - can we get in "trouble" for not following our pediatricians suggestions/referral? Is this a State by State issue? I am distressed by all of this and not sure what to do. If ANYONE could give me some advice, I would really appreciate it. Thanks and God Bless......

 

What Children's Hospital? Some are VERY closed minded and anti-PANDAS (don't believe in PANDAS).

 

I think the workup would be okay, but take it with a grain of salt. It really depends on the hosp. you go to.

 

Back in 2008, when our dd had her severe PANDAS exacerbation, our psychiatrist was on board with the diagnosis, but our ped was not (or at least very cautious, not really okay with long term abs etc). We saw both a rheumatologist (at the local children's hosp.) and a neurologist (who our ped referred us to). Both the rheumatologist and the neurologist agreed with the PANDAS diagnosis and were okay with long term abs. So, for us, now our ped was forced to "be on board" since these specialists were as well.

 

I think it depends on the ped. We didn't switch (although our ped isn't super interested in PANDAS, she accepts the diagnosis and goes along with it). I should say, that I recently saw another ped, when our ped was on vacation. Wow, I was SO glad we had our ped. The one ped I saw refused to order vitamin D testing on our non-pandas dd (even though every one else in the family had been tested and were either borderline or low). I also explained (our regular ped was on vacation for 3 weeks, and we were there with our non-pandas dd anyway), that I'm sure it would be ok to order it (with our regular ped) b/c she ordered it on our other child. She still refused and gave me this strange lecture about what would you do anyway if a child's vitamin d level was low and they are drinking milk and have good diet anyway? and how everyone was going crazy testing for vitamin d. (I could tell she was an idiot and not worth dealing with at this point).

 

So, I guess the question (about dumping your ped) is, do you think you can find someone better? Is your ped really bad (arrogant, not willing to listen), or just being cautious?

Edited by EAMom
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We knew it was time to "find a treating/knowledgeable Doctor" when our pediatrician of 12 years essentially said that Ps was controversial, yet she could no longer help us--and we were losing our daughter. I really liked this doctor, but thankfully there was another (younger) doctor in the practice who was interested in PANDAS and willing to work with our Ps treating doctor. I guess it comes down to just what you expect out of the doctor--treatment for a common cold, etc. then OK, maybe that ped. will suffice...BUT if they are not going to treat the illness your child has, well then...

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Our pediatrician was initially very sceptical too. We also went through all sorts of testing and they diagnosed her with everything from a UTI to a conversion disorder.

It was only after the Cunningham test results that her regular doctor came around. It also helped that saw not one but two Pandas experts who said she absolutely wasn't crazy. She now watches my daughter like a hawk every time we go there. If you're in NJ, I can tell you that there is one children's hospital you absolutely should not go to (It's in Morristown).

 

This is one situation where you really truly need someone with experience and intelligence and who won't just allow the kid to fall through the cracks.

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Our pediatrician was initially very sceptical too. We also went through all sorts of testing and they diagnosed her with everything from a UTI to a conversion disorder.

It was only after the Cunningham test results that her regular doctor came around. It also helped that saw not one but two Pandas experts who said she absolutely wasn't crazy. She now watches my daughter like a hawk every time we go there. If you're in NJ, I can tell you that there is one children's hospital you absolutely should not go to (It's in Morristown).

 

This is one situation where you really truly need someone with experience and intelligence and who won't just allow the kid to fall through the cracks.

We have a problem with our pediatrician too. I use them for minor issues and when I get the energy will find another ped. I was just told that if I have not completed most vaccinations (incl the chicken pox) on my child by the time she is 2, that I will have to leave the practice. It made me pretty sad that I have to argue with them about pretty much everything, but this latest pronouncement by the practice is probably the nudge that I needed to get out!!!! Good luck!!

 

Oivay-can you recommend a pediatrician in the morristown vicinity that is PANDAS friendly? Thanks :-)

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Just to let you know, we had to find a new pediatrician this January due to a change in insurance. I called and/or visited several practices and explicitly asked them if they would accept us as full-fledged patients if my kids were not completely vaccinated. Several said "no" right up front -- so I kept searching until I found one that said they prefer vaccinations, but they respected and would accept us regardless. Their administrator said that the clinics lose "insurance points" for not making sure that all patients are fully vaccinated, but their practice had decided that their responsibility was to their patients rather than to the insurance companies, which is why they had the policy they did!

 

 

Our pediatrician was initially very sceptical too. We also went through all sorts of testing and they diagnosed her with everything from a UTI to a conversion disorder.

It was only after the Cunningham test results that her regular doctor came around. It also helped that saw not one but two Pandas experts who said she absolutely wasn't crazy. She now watches my daughter like a hawk every time we go there. If you're in NJ, I can tell you that there is one children's hospital you absolutely should not go to (It's in Morristown).

 

This is one situation where you really truly need someone with experience and intelligence and who won't just allow the kid to fall through the cracks.

We have a problem with our pediatrician too. I use them for minor issues and when I get the energy will find another ped. I was just told that if I have not completed most vaccinations (incl the chicken pox) on my child by the time she is 2, that I will have to leave the practice. It made me pretty sad that I have to argue with them about pretty much everything, but this latest pronouncement by the practice is probably the nudge that I needed to get out!!!! Good luck!!

 

Oivay-can you recommend a pediatrician in the morristown vicinity that is PANDAS friendly? Thanks :-)

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