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Warning for those in Boston

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Does this really surprise anyone??? Shocking and disgusting, but not surprising. Those of us with Pandas/Pans kids know the horrors of dealing with main stream medicine....... at the lowest levels. I will not lose control of making the decisions. I pay out of pocket with a high deductible HSA and all the supplements I get from a DAN are on me. The moment we as indiviuals lose the power of the purse, at that point we will ultimately lose the control over our childrens care. And at that point, Those docs that are not main stream docs will be forced out or be forced to comply. Romney care........Now Obama Care.......we are not headed down a good path.

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This really has nothing to do with RomneyCare and ObamaCare. Neither one is taking away yours our our ability to pay privately for services. And, this case has nothing to do with who is paying. This has to do with several people at that hospital who have some kind of power issues, and for some crazy reason are not having administration deal with it.

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My child was seen at BCH in 2012 with what I thought was PANDAS. I was very nervous taking my child there with all that I had heard. Thanks to you I let them know I was well aware of their past track record with kids with possible PANDAS. Long story short my kid did get a amazing doctor that was not blind to PANDAS but they just couldn't find anything medically wrong. While they never would come out and say it was PANDAS they would call it presumed PANDAS. Our child was treated with antibiotics & IVIG. In the end the doctor was willing to continue to treat our child but was getting a lot of pressure from the powers that be. My child did open a lot of people's eyes and I hope some learned from our child but I know not all but hopefully some. Did I get lucky?? I just wanted to let people know that BCH does have some good doctors that are not closed minded to PANDAS.


I do agree that if you think your child has PANDAS that BCH may not be my first choice. I'm grateful for most of the doctors that treated our child at BCH. We no longer take her to BCH.


I'm not trying to stir the pot but I just wanted to let people know my story.

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We had a horrible experience at "Best in the West". They diagnosed our child at age 6 in 2005, with OCD/ PANDAS. At that time they didn't understand it but were willing to learn and did video taping etc. In 2011 we had a severe flare with a 30 lb weight loss, emotional lability where he would try to jump out of moving cars, major OCD, loss of Math and some reading abilities. We took him to the hospital with a transport service, which was 2 big guys in their own vehicle so he would get there safely and not jump out of the car. We brought all previous records from the SAME hospital.


They locked him down on Psych ward. Refused doing any blood work for infections or allergy testing requested from their own Immunologist. Called grievance office twice and told it would be handled during parent meeting days later with all Drs including the Head of the hospital. I had Beth on Conference call, brought in a highly respected OCD Dr. who treated my son 2 years prior during a flare where basic course of antibiotics didn't work. (Didn't know about viruses then).


No other Drs were present as promised but treating Dr and social worker. They agreed to blood work that turned out to be only an ASO titer test and outpatient OCD service. We left that afternoon with no treatment, no medication, and no real food except ice cream for 4 days. My husband and I got 8 weeks of parenting lessons!


That night he had a Grand Mal seizure but I didn't call an ambulance because I was afraid they would take him away. Next we tried to go to outpatient OCD clinic and he jumped out of moving car and took off. Fortunately he came home an hour later.


Our pediatrician put him on steroid burst till we could get him to a PANDAS DR 2 months later. It was horrendous and unraveled our entire family. Blood work was finally done and he had high Anti DNase B titers, Mycoplasma titers, Herpes 6 titers (15x normal) and life threatening allergies. 36 hours after Valcyclovir we had amazing improvement. He could of avoided hospitalization with this one medication!


A year later in 2012 another parent went to this same hospital. Their treatment was even worse than us! I am from a medical family and still can not wrap my head around our experience. Nothing makes sense with their adamant refusal of medical treatment especially since he was a previous patient.


I have not shared this publicly but feel it is important in case this is a trend across the country and BCH is just more visible. Please know the hospital you are taking your child to. Also have back up support because as a parent in crisis it would be invaluable to have someone help in the decision making process.

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