the latest and not so greatest

[saidie10]

You guys have been great with lots of good advice. I am hopeful about getting in with Dr. Mazade soon. We will see what I can find out from him and the Neurologist in Houston we have an appt. with May 25th. I did find out that Dr. M will treat PANDAS *if* he diagnosis (apparently his is pretty strict and stringent with his diagnosing). That is fine. Hopefully I will find out Monday and will hear from both of their offices. I will call my sons Pedi to send a referral to Dr. M. Hopefully that will help us get in earlier.

 

Feeling better today. Had a wonderful tantrum free day with both my boys. They are overly silly, goofy and sometimes seem a little delirious, but hey, no fighting, tantrums or CRAZY eyed behavior today. Nice change from the last week!

[peglem]

The way I got treatment for my daughter was by finding and presenting evidence...to the right docs. It never worked at the local children's hospital, because the physicians there are all afraid of the oversight committee. I have a feeling that those doctors who claim to provide only "evidence based" care are really only providing "policy based" care. The evidence is there...sometimes policy trumps it!

[EAMom]

I have a feeling that those doctors who claim to provide only "evidence based" care are really only providing "policy based" care. The evidence is there...sometimes policy trumps it!

 

I completely agree!

[saidie10]

Couldn't agree more as well! I actually can't tell you how many times i heard my Pedi say "evidence based medicine" and then as we walked to the front she was talking about how she had to be careful how to code the office visit.

[EAMom]

Yup...when our dd was hospitalized back in 2008, the docs kept saying we're "evidence based" (as a reason for not giving our dd antibiotics)...but it looked like they weren't really interested in gathering actual evidence (we had ASK them to do cultures, they wouldn't have otherwise). The private practice psychiatrist we found (who KNEW the docs at the hospital--had worked there) was on our side, trying to get them to rx the antibiotics. Her point was, "what harm could it do"?

 

ANd how many docs don't bother to actually READ the other evidence (papers and studies) that PANDAS parents present to them?

[datagirl]

Hi, I am new to this forum and PANDAS. I am in the Houston area and sought out a DAN autism-specialist doctor to treat my son's ADHD with a biomedical approach. My son's change in behavior and sleeping patterns started around age 18 months, so younger than the norm expressed for PANDAS, but I have seen some guidelines updated to 18 months instead of 3+ years onset age. My son, oustide of his ADHD medicated time zone, is very high on the emotional lability. Very hyperactive. And so many other things typical with PANDAS, except not heavily noting tics except more in retrospect. I read about PANDAS 3 days before our first DAN doctor-ordered test results came back. Once I read about PANDAS, I felt I had some answers I had been seeking for over 5 years! His test results showed ASO at 433 and Strep DNAse at 1920. Mom's know! Our doctor diagnosed PANDAS and ordered Zithromax started. We are waiting to get some other testing completed before we can start the antibiotic....but soooo anxious to start! Also on a GFCF diet and completed food allergy tests, and taking nutritional supplements prescribed by our doctor. The doctor is wonderful! I would also like to form a support group in the Houston area - please respond if interested.

[sptcmom]

What would you like to do? IVIG? I spoke with Dr. Susan Swedo and her staff and she emailed me back a list of doctors in NY, NJ, PA area who will treat PANDAS. There so many more- Dr. Josephine Elia at CHOP, Dr. Harumi Jyonouchi at UMDNJ are both using IVIG high dose from what I've gathered. Theres another one in Philly I have info somewhere, and Dr. Friedenfeld in NJ is also using IVIG successfully willing to follow Dr. K's protocol. Dr. Jyonouchi was recommended by a very famous peds emergency med colleage of mine as also by Dr T. Also Dr. Legido at St Christopher's in Philly.

[sptcmom]

Its very sad but your doctors are correct about their evidence based practice comments. I also teach Evidence based practice and Research Statistics to medical residents and doctoral students. The evidence has to be from Randomized controlled trials/ studies with large sample sizes and long term followup for a major invasive procedure like IVIG to get FDA approval. I mean a fully accredited, academic, ethical, consent obtained blinded RCT that says IVIG works for Pandas etc. That is truly lacking since all this is so new and controversial. The evidence is certainly not there. Similar to Sensory Integration Therapy which is so mainstream and so many many children benefit but insurance companies will have no part of it due to the lack of valid research evidence. I have to say though the latest American Occupational Therapy Asso Journal does have a wonderful high evidence study on vallidity of SI treatment. Hopefully soon for Pandas. I know Dr T and Dr. K are beyond brilliant and am sure are each working on it.

[sptcmom]

Couldn't agree more as well! I actually can't tell you how many times i heard my Pedi say "evidence based medicine" and then as we walked to the front she was talking about how she had to be careful how to code the office visit.

Thats weird. Insurance companies have a standard physician office visit procedure code. No big deal. Any decent insurance plan esp PPO will cover office visit even with a simple diagnosis code for headaches for crying out loud. The diagnosis code- ICD-9 code becomes imp when you want a procedure code or CPT code covered/paid for by your insurance plan. Based on your plan, some procedures can only be paired up/paid for with certain diagnosis codes.

IVIG IS usually approved for with genuine immune deficiency as per bloodwork, polyneuritis, Guillian Barre syndrome etc.

[Tenacity]

I would like to know, whatever happened to the Hippocratic Oath, "to do no harm"? And whatever happened to common compassion and to fundamental scientific curiosity? How is it that so many people become doctors, without having these essential qualities? Peglem hit the nail on the head. Policy is trumping evidence.

 

Furthermore, policy is absurdly inconsistent. Whatever the merits or demerits of so-called "evidence-based practice," there can be no denying that there exists a nearly universal double standard when it comes to the application of this "evidence-based practice." If someone is battling a deadly cancer and there's ample empirical evidence that a particular treatment could save his life, does his doctor really casually send him home to wait for some long-term studies to come out?... And where are the long-term studies on the 15 or so "off-label" psychotropic medications that were prescribed for my child over the three years he was diagnosed with bipolar disorder, before we figured out -- in spite of a very long series of arrogant, stupid, and dismissive doctors -- that he actually has a post-infectious autoimmune disease of the brain? None of the doctors ever expressed the least doubt about the validity of their bipolar diagnosis or about the advisability of piling on the drugs. Since the standards of "proof," diagnosis, and treatment, are not the same, a false psychiatric diagnosis is often what we get, instead of a true neuro-psychiatric diagnosis -- not for any valid scientific reasons, but for cultural ones.

 

Underneath the questions of evidence and policy, what we've got is terrible ignorance and prejudice when it comes to mental illnesses. And most of the pediatric psychiatrists and neurologists we have are just as ignorant and prejudiced as the rest of our society. Thank God for the exceptions!!!...

[sptcmom]

I would like to know, whatever happened to the Hippocratic Oath, "to do no harm"? And whatever happened to common compassion and to fundamental scientific curiosity? How is it that so many people become doctors, without having these essential qualities? Peglem hit the nail on the head. Policy is trumping evidence.

 

Furthermore, policy is absurdly inconsistent. Whatever the merits or demerits of so-called "evidence-based practice," there can be no denying that there exists a nearly universal double standard when it comes to the application of this "evidence-based practice." If someone is battling a deadly cancer and there's ample empirical evidence that a particular treatment could save his life, does his doctor really casually send him home to wait for some long-term studies to come out?... And where are the long-term studies on the 15 or so "off-label" psychotropic medications that were prescribed for my child over the three years he was diagnosed with bipolar disorder, before we figured out -- in spite of a very long series of arrogant, stupid, and dismissive doctors -- that he actually has a post-infectious autoimmune disease of the brain? None of the doctors ever expressed the least doubt about the validity of their bipolar diagnosis or about the advisability of piling on the drugs. Since the standards of "proof," diagnosis, and treatment, are not the same, a false psychiatric diagnosis is often what we get, instead of a true neuro-psychiatric diagnosis -- not for any valid scientific reasons, but for cultural ones.

 

Underneath the questions of evidence and policy, what we've got is terrible ignorance and prejudice when it comes to mental illnesses. And most of the pediatric psychiatrists and neurologists we have are just as ignorant and prejudiced as the rest of our society. Thank God for the exceptions!!!...

Its the medical liability insurance which is astronomical for any doc esp peds docs and sue one sue all tendencies rampant in pediatric practice esp. Peds specialists walk a fine line since there aren't a lot of human studies done on little ones . Severely affected children in any branch of medicine usually have parents willing to try a newer approach like us with Pandas and off label use IVIG etc. Thats why there are drug trials and good studies for medications. Medications are widely used because there is some kind of paperwork backing them up as also the pharmaceutical industry which is a behemoth. Peds or any specialist rarely follow old school "take an indepth history and try to diagnose" approach. It more like poke, test and probe the child to death and then arrive at a maybe diagnosis. Thats one thing I love about Dr. K and Dr T- very old school yet very modern in approach to treatment.

Psch and neuro used to be a joint discipine. Things went south when the two wee seperated for some reason. Yes, mental illness has an enormous stigma attached but such is the society we live in.. Many docs are indeed unaware but many are just plain afraid of radical perceived approaches and making costly mistakes.

I agree- thank God for the exceptions!

[tpotter]

Dr. L. is out of her office until the beginning of August. Dr. K. and Dr. B. I believe are available. Don't hold your breath waiting for Dr. T.

 

This is why NIMH absolutely must update their website. It does make sense that doctors will follow their lead. It's not ok that Dr. Swedo is apparently saying one thing at conferences, but hasn't updated her website!

[tantrums]

What would you like to do? IVIG? I spoke with Dr. Susan Swedo and her staff and she emailed me back a list of doctors in NY, NJ, PA area who will treat PANDAS. There so many more- Dr. Josephine Elia at CHOP, Dr. Harumi Jyonouchi at UMDNJ are both using IVIG high dose from what I've gathered. Theres another one in Philly I have info somewhere, and Dr. Friedenfeld in NJ is also using IVIG successfully willing to follow Dr. K's protocol. Dr. Jyonouchi was recommended by a very famous peds emergency med colleage of mine as also by Dr T. Also Dr. Legido at St Christopher's in Philly.

 

Who is that doctor at UMDNJ? Is it Bristol Myers Squibb or just UMDNJ? I have an appt with ped Rheumatology in October. Also Dr Friedenfeld. Is that a neuro?

 

I didn't hear great things about Elia so I made an appt with rheumatology directly at CHOP. When I called the referral line at CHOP, they tried to refer me to Elia bc they said she is the one who treats PANDAS. I said I wanted the physical symptoms treated NOW!

 

I had the same problem with finding a psychologist as well I cannot tell you how many I called and emailed! Started with who I heard was good and worked my way down just contacting ANYONE!!! I have an appt monday with a LCSW.

[EAMom]

I didn't hear great things about Elia so I made an appt with rheumatology directly at CHOP. When I called the referral line at CHOP, they tried to refer me to Elia bc they said she is the one who treats PANDAS. I said I wanted the physical symptoms treated NOW!

 

YUp...I hadn't heard great things about her either. This is what our "helpful docs" thread says:

 

Dr. Josephine Elia at Children’s Hospital

Will discuss the course of the illness; conservative with antibiotics or pex/ivig

 

I don't think many folks on the forum want to go great to great lengths to see a doc who is going to be conservative with antibiotics or pex/ivig. What would be the point? You could get that from a regular local ped!

 

And what are we going to learn about the "course of illness" that we haven't already learned on this forum?

 

[Tenacity]

QUOTE:

Its the medical liability insurance which is astronomical for any doc esp peds docs and sue one sue all tendencies rampant in pediatric practice esp. Peds specialists walk a fine line since there aren't a lot of human studies done on little ones . Severely affected children in any branch of medicine usually have parents willing to try a newer approach like us with Pandas and off label use IVIG etc. Thats why there are drug trials and good studies for medications. Medications are widely used because there is some kind of paperwork backing them up as also the pharmaceutical industry which is a behemoth. Peds or any specialist rarely follow old school "take an indepth history and try to diagnose" approach. It more like poke, test and probe the child to death and then arrive at a maybe diagnosis. Thats one thing I love about Dr. K and Dr T- very old school yet very modern in approach to treatment.

Psch and neuro used to be a joint discipine. Things went south when the two wee seperated for some reason. Yes, mental illness has an enormous stigma attached but such is the society we live in.. Many docs are indeed unaware but many are just plain afraid of radical perceived approaches and making costly mistakes.

I agree- thank God for the exceptions!

 

 

Thanks for the insights. Now I appreciate my smart and stalwart pediatrician even more. She continues to help us look for answers and seek expert help for my son, even after a long series of specialists at the local hospital she relies on essentially scoffed at our concerns, and suggested we were wasting their time. What a contrast to our former pediatrician, who, when I called her office repeatedly to say that my son had abruptly turned suicidal and was hallucinating, refused even so much as to call me back. The doozie was the time I called in, only to be told by the receptionist, "You've dialed the wrong number. This line is only for sick children." That about says it all, huh?...

Edited June 27, 2010 by Tenacity