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Anyone have a Pediatrician question your PANDAS Doc?

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I just got a thorough tongue lashing from my pediatrician today about the course of treatments and lack of communications coming from the PANDAS Doc we consult with. Has anyone else had a similar difficulty? They basically questioned the prophylactic dose of antibiotic we are on, the lack of credentials of our expert, the validity of his practice, and the general lack of communication from him to them. I basically left the appointment feeling they wanted me to chose either them or the PANDAS doctor. Have any of you experienced this, and how did you handle it?

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Oh yes.

 

Our pedi says he believes in Pandas but does not believe in the treatment, abx, steroids, ivig... He says we need to be doing therapy.

 

Now the dev. pedi we see who is treating the Pandas basically will do anything to help our son. We have been experimenting with medicines to see what would help. At this point I do not even tell the regular pedi what we are doing. We see him once a year for the annual checkup and we see the dev pedi about every two weeks now.

 

If you want to send me a private message I can give you names. We are also in Pitts.

 

<_<

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Those tongue lashings (from both the family doctor and pediatrician) were very uncomfortable, and left me seriously questioning whether or not I was doing the right thing. But looking back after 1.5 years of treatment (including behaviour therapy), DD11 is very improved. She is HAPPY. I doubt whether dosing ritilan and clonopin would have had the same effect. I handled it by politely saying "thank you" and walking out. There was little sense in trying to educate them. Wish we Canadians could find some helpful pediatricians.

Edited by rowingmom

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My pediatrician believes in pandas and I have only seen a specialist once who had put my ds on prophylactic antibiotics and he told me that he understood my dilemna but he wasn't comfortable with the antibiotic use. He didn't lecture me though and respected my decision at the time to continue it. I stopped after a year because I too became uncomfortable with how uncomfortable my trusted pediatrician was with it.

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well, yeah -- been there. i think my best advice is that as unfortunate as it is, we as the parent have to become the case manager and work to develop a team of professionals that you seek out advice and help from and formulate the best plan for your child. many of the professionals that specialize in a certain area become just that -- specialists -- and they may see things through a narrow lens. perhpas you don't see your child in that same lens. you may want to keep some of that perspective, but it doesn't need to be YOUR full perspective.

 

early on in my son's onset, we had what increasingly became known as a useless ped practice. the previosuly trusted docs got angry with me for consulting a naturopath -- how dare i not follow them verbatim -- that attitude to me is a huge red flag. i knew it was over when she said to me, "i think you'll find the behaviors and the strep are unrelated." this was a child with 898 ASO, a positive strep culture and a flip of behaviors.

 

our current ped is helpful as i accept him as a ped -- with limitation that come along with that -- he is respectful of my choices, willing to consult with other docs and offers me his opinion -- it's then up to me to take it or not -- sometimes i do -- other times i don't. i think he'd rightfullly become irritated if i continued to consult but didn't take his opinion -- but i don't -- i see him as our front level ped for physicals and emergencies - not management and improvement of chronic issues.

 

this past summer, we added another doc to our team. i have a fabulous integratvie MD who has done great work in clearing infections. however, i wasn't so sure we could end there -- i thought we needed something else. the new doc works with a biochemistry slant and is balancing some levels with ds -- specifically a copper/zinc imbalance. both of those areas are over the peds expertise. we continue to see both those docs.

 

yes, it's exhausting and unfair to have to do the level of research and managing to pull that off. and it can be confusing to all. but. . . i only have to think of some of the things that were said to me when ds first presented to know i can't put all my faith in one person or one philosophy. there is just too much about pandas that is not understood. medicine is not an exacting science and you just have to look at history to realize some of the ridiculous things we have believed.

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Unfortunately, I think it comes with the territory. <_<

 

At some point, you just have to make the decision as to who/what you trust . . . your PANDAS expert, your ped, your gutt . . . and commit to it. Personally, I don't mind having a little measured cynicism and/or second-guessing in the mix. I think, in our case, it helped keep me grounded so that I didn't chase absolutely every potential measure or intervention that came across my radar without giving it some thought and research first.

 

That being said, it can be both frustrating and demoralizing. And I do feel a degree of caution is warranted, as well. If you give a non-PANDAS doc the idea that you're some sort of "loose cannon," dosing meds and supplements without measure or due professional guidance, I'd fear you might wind up in a Boston Children's "situation," if you get my drift.

 

In the end, I would be fairly judicious about what I chose to say to whom. If you find your ped to be useful for some purposes, keep them, but measure how much and what you share from the PANDAS side. Unfortunately, in our experience anyway, with the possible exception of Dr. M.'s group, most of the PANDAS experts are too bogged down with PANDAS cases to serve as your child's primary doctor for other health needs, so you have no choice but to turn to someone else for some of the more basic needs. You're the gateway, so ultimately, you control the care and the flow of information.

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few comments on what was said in this thread:

1) On this forum I was told several times that behavioral therapy is a necessary part of recovery, not the only part, however. that is correct in our case.

2) when strep attacks heart, standard procedure is abx until person is 20 years old. So, there are some peds who are comfortable with profilactic abx in some cases which are, in some ways, similar to PANDAS

3) in our experience, we are our children's best doctors. We had to become peds and specialists as well as different parents. And we keep being open to the possibility that our kids do not, in fact, have PANDAS, but something else.

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If physicians have any problems with PANDAS children being on prophylactic antibiotics, I would ask them how they would treat the child with rheumatic fever. Guidelines for RF are prophylactic antibiotics into adulthood. Here are the AHA RF guidelines.

 

http://www.aafp.org/afp/2010/0201/p346.html

 

Colleen

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The pediatrician was questioning why the PANDAS doc prescribed zith, and why it is being given only twice a week. She feels this isn't going to protect against infections. I know a number of us here get a similar script for prophylactics. Does anyone have supporting documentation that this is an appropriate treatment?

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If physicians have any problems with PANDAS children being on prophylactic antibiotics, I would ask them how they would treat the child with rheumatic fever. Guidelines for RF are prophylactic antibiotics into adulthood. Here are the AHA RF guidelines.

 

http://www.aafp.org/afp/2010/0201/p346.html

 

Colleen

All great until you get to the end:

"PANDAS

It has been proposed that an autoimmune response after a streptococcal infection may result in obsessive-compulsive disorder or tics in some children. This concept, known as PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections), is controversial, and the current evidence suggests that it should be considered a yet-unproven hypothesis. Until a causal relationship has been established between PANDAS and GAS infections, routine laboratory testing for GAS is not recommended to diagnose this disorder, and long-term prophylaxis or immunoregulatory therapy is not recommended."

Thanks, AHA!

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The pediatrician was questioning why the PANDAS doc prescribed zith, and why it is being given only twice a week. She feels this isn't going to protect against infections. I know a number of us here get a similar script for prophylactics. Does anyone have supporting documentation that this is an appropriate treatment?

It has to do wih its long half-life....after 4 years of a combo of higher dose abx, my daughter is 100% on this as maintenance! Changed peds. When my last one was doubting....now have an excellent one who will state he's not the specialist....whatever dr, B, Dr, T, Dr. L have said he's respected. He trusts me and I'm able to adequately share the info. Get a ped, who trusts and respects you.

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