Non-treatment at Duke Children's Hosp., Durham NC

[LaurenK]

That's rough PTC girl. I find that I just don't get caught up in that anymore. You don't need every childrens hospital and every doctor to believe. You just need 1. Plus, just because they don't believe now doesn't mean that they won't believe forever. Hope your brother comes around.

Edited August 26, 2012 by LaurenK

[dpet]

I spoke with DR Grant who is helping Svedo with the upcoming trials. He said when all of these studies were complete there wouldn't be anymore " I don't believe it's real" stuff. Keeping my fingers crossed😁

[MMC]

ptcgirl, I wonder what your brother would say about Sydenham's chorea? This diagnosis has been around since the 1600's. Does he dismiss this as well?

 

PANDAS is just a variant of SC...

 

http://en.wikipedia.org/wiki/Sydenham's_chorea

 

SC and PANDAS have some striking similiarities with some differences in the presentation as well. Which is no surpries to me, with all the changes the human body evolves within...such as innoculations, diet and food supply changes (for the worse), environment changes, etc. I beleive a lot more kids are now predisposed to immune system disorders such as PANDAS. Third world countries still struggle with SC where there are no readily available antibiotics. We have a family friend who is a neurologist and he and his practice dismissed PANDAS as well, and he knows about our kids with PANDAS. He recently told one of my family members they are now starting to understand and treat PANDAS kids to a certain degree...so, yes time will be on our side. But, time sure does move slowly when you see your child suffering and you struggle to find a good doctor and treatment.

[Kiera]

Good advice, LaurenK. Haven't thought about going about it that way.

 

This issue is particularly disturbing to me since my brother is a doctor at a well known children's hospital and still doesn't believe in PANDAS. It administers IVIG everyday yet we have to travel many states away to receive treatment. It has really put a wedge in my relationship with him (as you can imagine). Then, when my dd was diagnosed with Lyme it made things so much worse. I truly hope one day he comes to me and apologizes for all the hurtful comments he has made. I hope the research comes through quickly with more and more proof that this DOES exist. He has repeatedly stated that all of the studies are far too small to prove anything (which I guess is why the mainstream medical world doesn't get it yet). Annoying since it is our kids that suffer.

 

PTCgirl, Given time, you will be vindicated and your brother will have egg on his face!! Then you can brag that you were way ahead of the curve and maybe YOU should've been the doctor in the family

[taffeelion]

Went to Duke children's ER last weekend (everything's OK! DD3 is doing much better , as of right now she's at about 95% - hope this lasts, we are only 2.5 weeks post positive strep test & start of Abx).

 

The doc (resident?) never heard of PANDAS and called up to neuro who told her they don't believe in PANDAS. She said she then looked it up herself while we waited and thought it was a feasible diagnosis. She then got an earfull from me to relay back to neuro. I told her children may suffer due to their close-mindedness. That the NIH and insurance companies 'believe' in PANDAS. That their lack of medical curiosity is ridiculous. I told her I don't what's wrong with my daughter, but I'm damned sure not going to dismiss PANDAS because of a pre-conceived belief.

She said maybe that was a bad choice of words. I agreed.

 

This makes me so mad. I recently called Duke Childrens Hosp. in Durham NC, and was transferred to Neurology by the referral staff member there. I was given the names of 2 docs who "treat PANDAS". When I asked the receptionist for an appt. and inquired as to the experience of the docs, she put me on hold. She returned several minutes later and said, and I quote "They are all tlaking right now and trying to decide which doctor will see your son, because they really don't believe in that diagnosis". OK, well then why are they wasting my time and money? I asked this very question and she said "Well, a lot of kids come here with a PANDAS diagnosis and then the doctors find out that the diagnosis is wrong and it is really something else". Really?? The lack of professionalsm and the attitude of this hospital floored me. This, after they were in part responsible for my son's lack of care when he was 1st diagnosed at age 2.5. I took him to a Neuropsych there who stated: "It could be Tourette's and it could be PANDAS. The symptoms following Strep seem to point toward PANDAS...come back in 6 months". 6 months later we were in serious trouble and the train had already left the station. Thank you so much for throwing my son to the wolves. I will stick with our long journeys to the North, thank you!