MISDIAGNOSED?
By Kim Stagliano
Is Miss Hannah Poling patient #1 in the new paradigm for "The disorder formerly known as autism?" Perhaps we'lll come up with a really funky sign like Prince did? Was Hannah misdiagnosed with autism, when she actually had a mitochondrial disorder that was triggered by her childhood vaccines? If so, there may be tens of thousands of children who have been misdiagnosed. That opens up rather a large can of wigglers, doesn't it?
I begged doctors to test my oldest child for metabolic disturbances when she began having intractable seizures at age six. I presented testiing from THIS company to my neurologist (who was an MD, PhD like Dr. Poling.) I was told "I don't work with that lab. We're not that aggressive with autism." I begged for a spinal tap for my child in the ER of two major Children's Hospitals during seizure visits because the seizures came when she was sick and had a fever. One resident said to me, "What kind of a mother wants a spinal for her child? It's very painful."
Painful? The child was seizing 10 - 15 times per day for days on end. Anti-epileptic drugs did nothing to stem the onslaught. The spinal tap might have given us detailed biological information. My daughter was denied treatment at every turn because of her "autism" diagnosis. Was yours?
Kim Stagliano is Managing Editor of Age of Autism.
Great, great point.
What's in the Pandora's-box-that-is-autism implicates powerful organizations and individuals. To us, what's in there is just the 24-7 truth. To them it's a different plague of horrors, one involving culpability, well-earned indictments and batch of future nonfiction books about the Mengeles of our era and what they did to children and to the world's future in the name of profit and to cover their own asses.
But what you bring up is the most amazing part of it, I realized. How the lackey docs in the system are somehow able to know-- possibly without ever being *explicity* told and definitely not even THINKING such a thing to themselves-- that they'd better not open that box (investigate the roots of our children's symptoms) if they know what's good for them. Paul Jarvis's unexplicit but clear email is like a glimpse into the software that policy decision makers shove up the slots of all the robo-allopaths out there, the ones we've all encountered who all somehow mysteriously "know better" than to try to crack the case.
What a nightmare it's been. Hope the bad worst is over with.
Posted by: Gatogorra | March 06, 2008 at 09:07 PM
Oh, yes. My experience is when non-DAN Doctors see autism, they stop looking.
Posted by: L Land | March 06, 2008 at 03:14 PM
I must say that the 3 neurologists we took my son to were all VERY honest. Each and every one of them said "We do not understand the human brain at all well to know why it seizes." Thank you doctor.
I, a parent without a medical degree, found out, through subsequent DAN and Yasko and homeopathic treatment that the seizures came from the infections from the combo vaccines sitting in my child's immune system rendering it incapable of fighting additional insults from the environment.
Gee doc, maybe you should learn to think "outside the box."
Posted by: Honest neurologists | March 06, 2008 at 12:01 PM
Our Pediatrician is widely considered as the best around. They werent concerned about the regression or the gastrointestinal symptoms . They resisted our request for a referral to a developmental pediatrician. They resisted our request for a referral to a pediatric gastrointestinologist. We made our own appts with both without their referral. The diagnosis was PDD on the autism spectrum.
At his three year check-up when my wife said no more vaccinations the doctor asked why. When my wife finished they said, Would you send me some of the sources you are getting info from because they "DO NOT TEACH US ANYTHING ABOUT AUTISM", and then said," If there's anything you need let me know". We expected quite a different response. Chalk up one for the good guys, another medical professional has been dragged into the fight. Better late than never I guess.
Posted by: A@T | March 06, 2008 at 11:57 AM
Monica, we too were handed a piece of paper with the "Lifetime Diagnosis" stamp and sent on our way. I requested various tests from our pediatrician over the years and was given the same old story, "Why?" and "I don't think that is relevant." When my son started having seizures, we met with a neurologist. Before the meeting I felt like, "Finally! We'll get some testing done!" This doctor only wanted to do tests to further his autism research - no tests that would actually tell us any information we could work off of to help ease my child's various medical problems. When I presented the neurologist with test results from, not one but, FOUR different labs, I was told, "We don't use those labs...I've never even heard of them. There are some very good medications out there that can help your child." I said, "Medications to treat the symptoms...but what about the cause? Can we try to figure out WHY this is all happening?" He was not interested.
Posted by: Jeanne | March 06, 2008 at 10:24 AM
When my son had his first seizure, we ran him into the doctor...the doctor told us, "Many of my kids with autism have seizures. You can take him to a neurologist, if you want, but there's really nothing they can do." Thank goodness Dr. Usman and Dr. Yasko didn't think that. Let's hope this recent wave that we are on will bring out more Dr. Usmans and Dr. Yaskos!
Posted by: Barbie Hines | March 06, 2008 at 10:21 AM
When my daughter, 6 months post Dx, was having severe GI problems (ie: pooping out spaghetti noodles), our pediatrician said "she's autistic, be more positive". I was baffled. Did her health not matter?
Her pediatrician kept asking why I wanted so much testing done. Why? The day of her diagnosis, we were given a sheet of paper that said autism. No referral for labs, no MRI, no specialist, nothing. I was amazed to learn that is the norm. Nothing is ruled out, they say autism, and want to hammer that final nail in.
That was not good enough for us. Luckily I was a pain in the rear for months, would walk in to appointments with Jade's chart and fistfuls of peer reveiwed studies for the specialists.
Had I not been so adamant, we would have never known about the abnormalities in Jade's immune system, or endocrine system. We never would have learned how to treat it. We never would have been able to convince her pediatrician that yes, this is from the vaccines.
Two weeks ago, we had our first victory- her Pediatrician gave her a permanent medical exemption to ALL vaccines! Hooray!
Back to the topic- Jade likely suffered encephalitis during a reaction to the MMR/ Varicella. The CDC and every medical establishment known to man accepts that live virus vaccines can cause encephalitis, and result in encephalopathy. Oddly enough, the symptoms of encephalopathy are strikingly similar to autism.
Posted by: Monica | March 06, 2008 at 09:01 AM