2 PANS kids fighting lyme and coinfections, our journey to healing

When self interest gets in the way, everyone suffers, no?

“… Culture writes on illness. That’s evident in the battle around a French documentary about autism entitled “Le Mur” or “The Wall.” Today, a court in the northern city Lille will decide whether the film, released online last year, should be censored at the request of psychoanalysts in the country, since it essentially charges that their approach to the disorder ignores decades of scientific progress….” Unfortunately, until we know why so many kids have autism and how, I am not sure there is one person can say that what will work for one will not work for another.  Mostly, success is measured in families not in large scientific studies.  To those who go against the “scientific”, there is much mud-slinging, yelling and berating, but what else to do when there is not much offered by the scientific community in the way of cause, effect and cure! Sadly, in our experience anyway, it led to much more in the way of fruitlessness, there was no help, no options, no answers.  It was basically figure it out yourselves, induce ridicule, often contempt, certainly a healthy dose of scorn and mirth, but still you endure, all in the hope that you will help your child out of the fog. Which in the end, I suppose we did.  Although, in my house the last few weeks ~ sometimes I wonder, so when I read this: FOX & FRIENDS: Dr. Bob Sears answers, “Can children outgrow autism?” Jan 26 So…what does this mean? More confusion among experts? The top people still know nothing about autism: cause, cure, treatment, prevention, etc. I have a hard time seeing what’s out there to smile about. Sears has treated over 500 kids with autism. WHY? Where did they come from? How did he treat them? A. Jan 26, 2012 HERE On autism: “A new study claims that children can actually out grow it. Do you believe it?” Dr. Sears: “I actually do believe it. The important message for autism is that autism is treatable. What made me mad about that study is that they found that about one third of kids with autism will outgrow or improve so much that they lose their diagnosis, which is wonderful. But they claim that those kids didn’t have autism in the first place. I don’t believe that. I think that’s wrong. As a pediatrician, I’ve treated over 500 kids for autism and I do see them lose their diagnosis. They have autism at the beginning but they don’t just … It’s not because they didn’t have autism...

Smoke and mirrors…

How on earth does anyone know who or what to believe.  The misinformation, corruption, pandering and spinning does nothing to help the kids and adults who just need to find out what, why, how and where to go from here.  Isn’t it time for the finger-pointing, blaming and ridicule to just stop, lets put that all to bed and get on with the more important work of figuring out WHY, 1 in 6 of our kids has a developmental difficulty!   I am not saying it is not important to vindicate Dr. Andrew Wakefield,  if he truly did not commit fraud.  It just perplexes me to think about how far we haven’t come! 13 years, and this is still a main focus of discussion, not just about the hypothesis per se, but the arguments, the rhetoric, the vindictiveness of those who try to discredit and those who try to verify… one long, long argument on who is right and who is wrong.  In the meantime, more and more of the nation’s kids are being diagnosed and/or medicated! Let’s keep moving forward with the business of figuring out the puzzle, not adding smoke screens to an already cloudy discussion. PR Newswire has this article this morning:  ” … Well-known Whistleblower Calls for Withdrawal of British Medical Journal Article Alleging Fraud AUSTIN, Texas, Nov. 10, 2011 /PRNewswire/ — The Strategic Autism Initiative (SAI), an autism research foundation, reported today that an ongoing investigation into the allegations of fraud against Dr. Andrew Wakefield concerning a paper published in The Lancet in February, 1998 is being conducted by an internationally respected scientist, Dr. David Lewis. Early results of his investigation, which were published on November 9, in The British Medical Journal (BMJ) and The Journal Nature, reveal that The Lancet paper in question accurately reported the results provided to Dr. Wakefield by the collaborating specialists at the Royal Free Hospital in London, contrary to the findings of a series of articles published by the BMJ in January 2011. According to Dr. Lewis, “There was no fraud committed by Dr. Wakefield. The crux of the matter in Wakefield’s case, so far as research fraud is concerned, is whether Wakefield fabricated the diagnosis of non-specific colitis for 11 of the 12 Lancet children as claimed in Table 1. Drs. Paul Dhillon’s and Andrew Anthony’s grading sheets clearly show that Wakefield did not fabricate the diagnoses of non-specific colitis reported in the Lancet article.” In addition to his work as a scientist, Dr. Lewis directs the Research Misconduct Project of the National Whistleblower...

Best Christmas EVER!

In the grand scheme of things a peaceful dinner is not really high on our list of priorities; however, Christmas day turned out to just that, a nice family dinner with no fights, crying or anyone throwing things – just family and friends sitting down to dinner and having a good time celebrating the season. Our son not only stayed at the table, he happily volunteered to lead the prayer, thanking God for being surrounded by his beautiful family and friends.  I was – to steal a well-known phrase – in shock and awe, and I confess a tear or two was shed into my turkey.  It was such a great proud Mum moment for me, not because he led the prayer but just that he WANTED to be a part of the celebration and acknowledge his family in a way he hasn’t before… If I had to write my blog that day I would have said, done, dusted, finished… nothing left to say.  The journey of normal has begun! Hitch up the wagons, let down the tents, this posse is moving onto bigger and better pastures 🙂  B-U-T Like all great days, you know only to appreciate the day with open arms and a willing heart, mostly because of the fear and loathing of those not so great ones rising up to bite you in the rear! The last few days have been tough, I guess it’s the anti-climax of a great Christmas vacation, they both had so much fun and tolerated each other’s presence better than they ever have, but the stress must be getting to them, lots of fighting and tons more “I hate my life, I am going to kill myself” from B.  Doesn’t take much at the moment to send him into a blind rage with clenched fists and a serious “I am going to explode” face.  Not sure what prompted this change in attitude to a less tolerant kid than we have been seeing of late.  Could be that the holidays are over, or that my sister left to go back home, not sure, but he certainly is struggling right now.  Last night, I climbed into bed and he growled at me, then said “I am going to kill you!” and launched both feet with force straight into my back, he almost knocked me flat assed onto the floor – I was beyond stunned.  I just told him straight, no more, I am done with this.  You do not get to hurt me,...

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