Why do non-pediatric doctors understand PANDAS?

[tpotter]

Why do non-pediatric doctors seem to understand PANDAS better than pediatric doctors (or is it that pediatric doctors are just denying it?) My dad was very sick the past months (he just passed away last week.) I have suspected for several years that my dad probably had PANDAS, and that's why he battled major depression since he was 20 yo (my now 18 yo DS presents exactly like my dad, but is being treated for PANDAS/Lyme.) Anyway, when my dad was hospitalized, because he fell and broke his hip (he was also suffering from advanced Parkinson's) he suddenly had a very violent episode. I found out that had changed his psychotropic meds, and I called his gerontologist (yes...old person's dr) I explained that both my DSs had "an autoimmune disorder that caused neuropsych symptoms", and that research shows that psychotropic meds can make it worse. She not only understood what I was talking about (although hadn't heard about the psychotropic meds connection,) but her response was: "now that explains a whole lot." He was taken off the meds.

 

Fast forward to 1 1/2 weeks ago, when he started to rapidly decline. I was visiting him, and had a meeting with the geriatric psychiatrist at the skilled nursing center. Again, I told her about both my kids have "an autoimmune disorder caused by strep, and causing neuropsych symptoms." I added that it is highly believed that there is a genetic component, and that my son and father present exactly alike. She had heard of PANDAS, and couldn't believe that it was still so "controversial." "How can they (the doctors) not believe that something exists when he got the symptoms right after getting strep (we were talking about my DS now 15 at that point.)

 

So, my question is: Are the pediatric doctors (pediatricians, ID, immunology, neurology, etc.) who deny the connection, fools, idots, or just don't care?

 

We've been knowingly fighting this disorder for 7 years, although my DS 18 probably had it since at least 1st grade (we have handwriting evidence dating back to that,) although he had a bad allergic reaction to the MMR, and also potentially got it from me (congenital.)

 

Just thought I'd pose the question.

[MomWithOCDSon]

Amen, sister!

 

For the last two years, we've been working with a pediatrician who's been skeptical but willing to help us with abx (at least up 'til now) based on her "do no harm" oath. I had a telephone conversation with her yesterday because I'd called hoping she'd be willing to try a different abx since our DS is struggling with a major exacerbation, despite his current prescription. Despite having seen the positive contribution generally made by the abx over the last 2 years, and my feeding her new research every couple of months, she still stated as follows just yesterday: "I still don't know that I believe PANDAS exists." And then she referred me to two pediatric neurologists because she thought maybe I should "consider looking at this from a different angle."

 

Meanwhile, we have switched psychiatrists and I finally found one who not only "believes" in PANDAS but acknowledges the impact of it in terms of dosing SSRI's and other psych meds. She even said to me, "Well, of COURSE you have to treat the underlying medical condition first because if you don't, none of these other interventions will be of any help at all!" But when I asked if she would then be willing to prescribe abx, she said, "Oh no, I'm not a pediatrician!" When I told her of our struggles to find a local pediatrician who understood PANDAS and was willing to treat consistently, she looked shocked, but she couldn't refer me to anyone.

 

So, in addition to not understanding why pediatricians are so "lagging" in terms of their intellectual curiosity or acceptance, I'm having a hard time understanding why everyone's so dogged about always sticking to "their side of the street," even in cases such as ours where it's obvious the abx helps, the psychiatrist acknowledges it, she has a medical degree and a prescription pad, but she "can't" prescribe?!?! What's with THAT?!?!?!

[Tamistwins]

Hi I'm in a rush, but did read your post and wanted to say how sorry I am that your father passed away. I know it must be an added difficult time to all your additional struggles.

Hugs.. Tami

[JAG10]

Amen, sister!

 

For the last two years, we've been working with a pediatrician who's been skeptical but willing to help us with abx (at least up 'til now) based on her "do no harm" oath. I had a telephone conversation with her yesterday because I'd called hoping she'd be willing to try a different abx since our DS is struggling with a major exacerbation, despite his current prescription. Despite having seen the positive contribution generally made by the abx over the last 2 years, and my feeding her new research every couple of months, she still stated as follows just yesterday: "I still don't know that I believe PANDAS exists." And then she referred me to two pediatric neurologists because she thought maybe I should "consider looking at this from a different angle."

 

Meanwhile, we have switched psychiatrists and I finally found one who not only "believes" in PANDAS but acknowledges the impact of it in terms of dosing SSRI's and other psych meds. She even said to me, "Well, of COURSE you have to treat the underlying medical condition first because if you don't, none of these other interventions will be of any help at all!" But when I asked if she would then be willing to prescribe abx, she said, "Oh no, I'm not a pediatrician!" When I told her of our struggles to find a local pediatrician who understood PANDAS and was willing to treat consistently, she looked shocked, but she couldn't refer me to anyone.

 

So, in addition to not understanding why pediatricians are so "lagging" in terms of their intellectual curiosity or acceptance, I'm having a hard time understanding why everyone's so dogged about always sticking to "their side of the street," even in cases such as ours where it's obvious the abx helps, the psychiatrist acknowledges it, she has a medical degree and a prescription pad, but she "can't" prescribe?!?! What's with THAT?!?!?!

 

I wonder if there is an entire course in the pediatric tracks of medical schools that indoctrinates them to believe if they prescribe abx without verifiable bacterial infection or for more than 10 days, they will be responsible for unleashing the plague and the extinction of mankind.

 

Between the vaccine schedule and the refusal to prescribe abx, I really think 20 years from now we will look back and rightfully blame American pediatricians for what has happened to our children.

 

Trudy- My condolences about your father.

[nicklemama]

I am so sorry to hear about your fathers passing.

 

I will just ditto JAG10. She couldn't have said it better.

[Stephanie2]

I often feel when I am talking to peds that I am talking directly to the AAP. I think in some ways they "work" for the AAP, liability reasons perhaps? So if the AAP doesn't fully embrace infectious agents causing psychiatric symptoms (and lets face it they don't otherwise they wouldn't be so opposed to the biomedical movement within the autism community) then the peds will not accept it either.

 

Just my wild guess here!

[EAMom]

So, in addition to not understanding why pediatricians are so "lagging" in terms of their intellectual curiosity or acceptance, I'm having a hard time understanding why everyone's so dogged about always sticking to "their side of the street," even in cases such as ours where it's obvious the abx helps, the psychiatrist acknowledges it, she has a medical degree and a prescription pad, but she "can't" prescribe?!?! What's with THAT?!?!?!

 

Yeah...

 

I have a child psychiatrist friend in another state...and she will rx antibiotics for PANDAS. And our psychiatrist will as well, but for many patients I think she prefers to have the ped do it. I do believe it is some strange "turf" thing...although I wonder how many peds rx prozac? And how about if the prozac is for a non-psych. problem (maybe migraines? as an example). So, then logically, wouldn't it be okay for a psychiatrist to rx antibiotics if it were to address a psych. problem?

 

Anyway, legally an MD is an MD...and (as far as I know) . I don't believe it says in the psychiatrist's license that they are allowed to only rx psych. drugs and not antibiotics.

[EAMom]

Hi Tpotter,

 

I think lots of peds are just wimps! Maybe they are trying to stay of trouble by not ruffling feathers or taking a stand.

 

I'm so sorry to hear about your father...and that's gotta extra tough dealing with illenss and PANDAS in both your parent and children. Hugs!

Edited April 6, 2011 by EAMom

[tpotter]

Thanks everyone for your replies. And, thanks for your condolences. You guys are the greatest.

[Ann280]

Sorry to hear about your dad... I am new to the pandas world with my daughter and I have already experienced so many negative looks and comments when I bring up Pandas..My own pediatrician was pretty good in guessing it as a possiblilty , but the moment the tests came back "normal" she completely dismissed Pandas and said it was defiantely BiPolar. I didn't have enough info. within me to answer every question so that didnt help.. Even my doctor I went to this week for a strep test and I explained why it was so important to have this test and he was like what's pandas..I started to explain ,but he was no interested in the least so I didn't even bother. He actually told me that the fast test for strep was 99% accurate...What the heck..really..It just wasn't worth speaking to a closed minded doctor...terrible...But I guess if they studied every infectious disease they wouldn't have time to practice anything...that's my only guess..that's why there is specialists. Yes it stinks.

[bws]

Now I am really wondering....

 

I am quite sure that my daughter has Pandas based on the handwriting changes and anxiety and OCD(just heard about all this recently) My son has tics right before he gets a strep. My first cousin has tics also (referred to a neurologist) My first cousin has a son with slight autism spectrum disorder. My uncle, I never knew what was really wrong with him, he was significantly "strange" ever since I knew him and was recently dx with Parkinsons. My grandmother ( his mother ) had Parkinsons too. Could this be one long story ????????

 

Condolences regarding you dad.