@benedetta,

No the Fm system is as you described and is the solution of choice for the time being for APD particularly here in the UK - but it does hiss a lot which was why i wanted to get hearing aids but no one would help us or allow me to buy them till he became "adult" sized! Our NHS wouldnt give him any as they believed he could hear - but based on his comment he clearly couldnt!

As a replacement I ultimately bought some digital hearing aids that suppress background noise whilst enhancing speech - perfect for his APD inability to separate noise from speech it was all babble to him - he loves his new aids over the blue tooth temp replacement we had which sounds much like what your father has. His new aids go in as soon as he gets up and last thing to come out at night.

What has been intriguing is how it has also reduced his hypersensitive hearing and his hyperacusis - i was told it was an attenuation problem - something like his brain trying to fix a problem it has with hearing but making matters worse to overcome the problem (upping the volume) - now it has consistent input and can "hear" it has stopped trying to fix it i guess.

Forgive me of my ignorance, but isn't Catatonia a form or expression of a petit mal, a long petit mal? A seizure?

For those interested in "the human gut reduces colitis and allergy-invoked diarrhea in mice."

... and remember one of the finest paediatric gastroenterologists of our time Professor John Walker-Smith ...

http://www.the-scientist.com/?articles.view/articleNo/36433/title/Gut-Microbes-Treat-Illness/
"with a cocktail of a few dozen strains of Clostridium bacteria derived from wild-type mice promoted the activity of regulatory T cells (Treg) in the colon. Treg cells produce important anti-inflammatory immune molecules, including interleukin-10 and inducible T-cell co-stimulator, to prevent an overreaction of the immune system, and disruption of Treg cells is known to play a role in autoimmune disorders such as colitis, Crohn’s disease, food allergies, and type II diabetes. Indeed, mice treated with the Clostridium cocktail appeared more resistant to allergies and intestinal inflammation."

“[This work] shows that microbes can influence the balance and architecture of the immune system of their host,” said Sarkis Mazmanian, an immunologist at the California Institute of Technology who did not participate in the research. “I think it has tremendous potential for ameliorating human disease.”

“It’s clear that gut microbes can affect many, many aspects of our physiology,” said Mazmanian.

"Clostridia bacteria include the well-known tetanus and botulism toxins. “Clostridia are very diverse bacteria, and include some pathogens,” said Alexander Rudensky, an immunologist at the Memorial Sloan-Kettering Cancer Center in New York and a cofounder, of Vedanta Biosciences, which he launched with the paper authors in 2010. “So, their role [in disease] may be surprising to immunologists and public, but not to microbiologists.”

******Children who regressed following vaccination seem to have trouble even producing sounds. Is this apraxia? This is something new for me to lookup and think about.

Can I suggest you explore Auditory Processing Disorder - my son was a regressive following MMR. Today we are pretty much recovered - what we are left with is a "hearing issue" whilst appearing to be able to hear and produce a audiogram when tested. His articulation was poor, speech production robotic, hesitant, slow - missed words, misheard, misunderstood, was good at filling in gaps whilst still not being able to repeat what was originally said, hypersensitive to sounds, hyperacusis to other sounds, the list goes on. He has been diagnosed with APD aged 11 with little solution other than being told he "doesnt need hearing aids" as he doesnt need amplification - having accepted that for a number of years and using FM systems in school we had a situation whereby he lost one of his fm system hearing aids - so i resorted to giving him a bog standard hearing aid used for amplyfying TV for elderly people (looked like a blue tooth type of aid,) on finding his lost hearing aid he then wanted to keep the other one - when i asked why he said "i can hear"! His support at school felt the FM was better for him because with the other hearing aids he was getitng distracted in lessons and looking around class and noticing what was going on - that confirmed for me that he was hearing more.

I managed to find somewhere on the web that would allow me to buy him digital hearing aids, on the basis i didnt want support as he is 15 now but still considered paediatric - they have transformed his life - 16 mths later he is sociable, interactive, his language has exploded, his hypersensitive hearing has diminished, he doesnt seem to experience hyperacusis now either , he is a transformed child. Everybody who has known him over the years cannot believe the difference.

Just thought I would pass on our experience in the hope it may help others in a similar situation

Katie, did you watch Jill Escher’s presentation on trans-generational germline disruption? That was truly fascinating in terms of toxic pharmacologic effects that are beyond permanent. Jill’s presentation was the most lucid, and I think she was the only one who adhered to the time constraint.

Portia Iversens’s videos of her son Dov were also very instructive, as were those of people who made “public presentations” and I’m beginning to see that the language problems of children whose autism began after vaccinations are different from that of my sons.

My first 2 sons suffered asphyxia at birth, and Conrad’s resuscitation was prolonged and difficult. My oldest son, now 50, finally learned to speak normally just before he turned 6. Conrad remained fluently echolalic, but you had to understand the original situation that provoked each of his out-of-context phrases. Children who regressed following vaccination seem to have trouble even producing sounds. Is this apraxia? This is something new for me to lookup and think about.

I just got home from the IACC meeting. Like other parents, I feel completely frustrated by the unwillingness of this committee to discus the issues we feel are important. I am grateful for Lyn Redwood’s remarkable gift for diplomacy. She is our advocate.

if not drugs....then ECT? Institutional indifference specialization at its finest.
(Insert Edvard Munch "The Scream")

ECT is wacko. Thank goodness Texas doesn't seem to embrace this type of thinking...not that Texas is great either. But, GI issues are a real thing and I know because my son has paralyzed bowels...had a number of impactions...finally no big feces...couldn't go to the bathroom and eliminate at all. And would you do ECT to correct that? Wacko. I heard this lady too and boy was I angry! Is this what autism is coming too? My son has his bowel cleanouts and is healthy and happy with no outbursts. Get real...bowel issues are real! I know. So glad I found} www.piemed.com

@ Amy .. please understand that my comments in no way are meant to question your own views on how best to treat your child. My friend .. we all agree .. whatever we think is BEST for OUR child .. we WILL DO.

I am in the process of reading Peter Breggin's book "Toxic Psychiatry" .. published in 1991 .. and .. like you .. I was struck dumb-founded when I read .. what I believe to be .. his out-dated, ill-informed, hurtful to parents .. comments on autism. And, yes .. reading his comments on autism ..caused me to question the rest of his observations regarding the profession of psychiatry.

After all .. Mr Breggin .. though he did not actually use the description .. came very close to expressing what has been fully discarded as a "cause" of autism .. "refrigerator moms".

Having said that .. I was wondering if you know that Mr. Breggin continues to hold those same .. extremely hurtful to parents .. views today .. twenty years later? I respectfully ask .. because the rest of his book .. 410 pages .. appeared to be well sourced?

In my humble opinion .. putting aside the dreadful comments on autism he penned .. twenty years ago .. it seems to me the rest of his criticisms of psychiatry have held true.

Such as .. no one can deny his warnings of the growing danger associated with the undue influence of the DSM .. which began and remains .. the "source" for psychiatry .. much the same as the Bible .. remains the "source" for religions.

It is from the constant updating of the DSM that many "modern" childhood pyschiatric diagnoses (ADD, ADHD to name just two) are being assigned to children .. in greater and greater numbers .. as if exuberant, excited, adventurous, defiant, undesciplined children .. were non-existant .. in generations past?

Once diagnosed .. the traditional .. individual pyschiatrist .. "one on one therapy" .. became more and more rare .. replaced by a new "treatment" .. more easily applied .. which allowed the pyschiatrist to prescribe psychotrophic/neuroleptic drugs .. to change the disruptive child's behaviors .. in other words to .. "calm them down".

This change in "treatment" appears to be of greater benefit to the pyschiatrist and the pharmaceutical industy .. than it is to the child. But .. that's my own .. admittedly cynical .. opinion.

I am a senior citizen .. but .. I can easily recognize those children of my youth who surely would have been "diagnosed" with various DSM generated .. psychological .. disorders. Myself included ..

And so .. as some sage once observed .. in my own opinion .. pyschiatry is to medicine .. what astrology is to astronomy.

@ Zed .. thanks for your kind words .. I suspect you represent a very small minority of one .. but .. I do appreciate your encouragement.

All valid points Amy.
It is a shame Dr. Wachtel did not communicate this. I found her presentation to be disturbing and her claim that ECT is perfectly safe bizarre. I am so happy that your son is better. I am also sorry you went through years of agony. Clearly you had exhausted every imaginable option. Thank goodness this worked for your son. However, I have spoken with a number of parents whose children were not screened for underlying medical issues prior to ECT. I think we are on the same page here. ECT is not an easy option be taken as lightly as Dr. Wachtel indicated. I have also spoken with parents whose children had awful reactions to ECT and did not feel they were fully informed regarding possible adverse outcomes.

The one point in which I disagree with you is that losing the ability to void is catatonia. Motility is a huge problem for GI kids. Theirs colon can become horribly impacted and they cannot void. I have seen this 100x This is not catatonia, at least not 99% of the time. I wish Wachtel had listened more carefully to Buie and recognized the overlap between GI pain and catatonia. His talk seemed to make no impact on her.

As the parent of a chid who receives ECT to control dangerous aggressive and self-injurious behaviors, as well as an attendee at yesterday’s IACC meeting, I feel uniquely qualified to respond to this post and some of its comments.

First, to correct a few inaccuracies. Catatonia is not a “psychiatric disorder,” as Katie writes. It is a neuromotor disturbance that can afflict those with and without disabilities (http://en.wikipedia.org/wiki/Catatonia) and that has been diagnosed for the past century. Putting catatonia in quotation marks, as Katie does, is like writing “epilepsy” or “diabetes”; catatonia is as legitimate a diagnosis as any of these, and the most malignant form can be fatal if not treated.

Constipation is not a symptom of catatonia, as Katie also asserts. When Dr. Wachtel noted that patients with catatonia may lose their ability to “void,” she meant voluntarily urinate. Catatonia has nothing to do with the gut.

But perhaps Katie’s most egregious error is her assumption that parents who choose ECT for their children do so prematurely: “ECT should be option 10 our of 10, not 3 out of 10.” Through my involvement with EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled (www.easifoundation.org), I have worked with several families whose autistic children receive ECT to control dangerous behaviors, and I assure you that ECT was option 50 out of 50 for each and every one of them. Before we resorted to ECT, for example, we spent a decade trying a GF/CF diet (for four years), B12 injections, auditory integration therapy, high doses of vitamins, topical chelation, and hyperbaric oxygen therapy. We also had Jonah tested for reflux, which he was treated for until his gastroenterologist decided medication was no longer necessary. We tried virtually every kind of psychotropic medication ever prescribed for aggressive and self-injurious behaviors, and when nothing worked, Jonah spent most of his tenth year on the neurobehavioral unit at Kennedy Krieger, where we met Dr. Wachtel – who, incidentally, never recommended ECT while Jonah was a patient there, because he initially responded to new medications. ECT was something we pursued when he regressed following his discharge. And we have seen no cognitive side effects as a result of his successful, ongoing treatment. In fact, Jonah’s school achievements skyrocketed once his rages stopped.

I would like to thank Katie for acknowledging how beneficial ECT can be in certain populations. For those commenters who laud Peter Breggin’s condemnation of ECT, I remind you that this is the same man who still blames parents for their children’s autism. He writes in his book Toxic Psychiatry, “It’s hard for me to grasp how a biochemical defect could specifically drive a child to withdraw from other people and to treat them wholly without love or affinity, while sometimes maintaining a normal intelligence or even special intellectual gifts. On the other hand, it’s very easy for me to see how an inherently intelligent child, treated as an object, would learn to treat others in the same fashion.” It is for unfounded, irrational statements like this (and others about ECT and psychotropic medications) that Breggin has been uniformly rejected by the scientific community.

Thanks for the opportunity to participate in this important discussion.

I'll say it again. Bob Moffitt for president.

Katie - Immunotherapy over ECT?
"Streptococcal Antibodies in ASD with Catatonia"
Five cases (age range 16-29) out of 78 of teens and adults (age range 16-60) with autism spectrum disorders presented with catatonia. Laboratory screening revealed an elevated anti-DNase Ab (avg. 544 [340-1360]; nl <85) in all five subjects with catatonia and an elevated ASOT (avg 437.8 [105-1210]; nl <200) in three of the five with catatonia. No clear recent streptococcal infections were identified in these five subjects. Three subjects demonstrated a positive clinical response to immunotherapy (the other two patients are still being assessed and are likely going to start immunotherapy soon).

https://imfar.confex.com/imfar/2011/webprogram/Paper8720.html

I agree with Katie regarding ECT. I know a lot about it because someone close in my family had it with profound positive results Never for our spectrum kids, but for an adult with suicidal depression it can be very effective. Remember, ECT, in this case, is used as a last resort when nothing else has helped. Some may think it's barbaric, but when it helps someone close to you, it seems much less a therapy to totally negate.
Maurine

Excellent article, Katie. But I do not agree that ECT is ever appropriate. Even in 2013, it is barbaric. Thanks, Jeanette, for the link to Dr. Breggin's article where he explains that ECT delivers a closed head injury, disconnects the frontal lobe from the rest of the brain, and is in effect, a frontal lobotomy.

John, thanks for the abstract. "In the recent series of mass murders in Connecticut, Colorado, Norway and elsewhere, a pattern appears to emerge: young men whose social isolation borders on autism apparently become prey to psychotic ideation, and under its influence commit horrific violence. We argue that in some of these tragic cases two concomitant diagnoses may be at play, namely autism and psychosis."

So, Wachtel was there to present her research about how to prevent persons that suffer from autism and psychosis from committing mass murder with ECT?

Is this really 2013? I feel like we've lost more than half a century.

Katie

I was about to ask what kind of parent would subject their child to this?

John

Thank you for this report. Though the later half is disturbing, that Dr. Buie presented is encouraging. We should be considering gastroenterology for more conditions in the DSM I think.

And there are a few psychiatrists who give me hope:

http://www.huffingtonpost.com/dr-peter-breggin/electroshock-treatment_b_1373619.html

There should be crimnal charges for such behavior???
Well you can't make a law for ever thing.

I see it as the same as the recent train wreck in Canada - no regulations for having an unlocked, running engine, hooked on to a whole bunch of tankers filled with oil, all sitting on top of a hill above a town.

And who invited Watchel to speak?
Who let this crack pot into an IACC meeting?
And why?
Oh, ECT works - sometimes -- but they don't know why? Sort of like vaccines. Oh, Okay that is what they have in common.

Watchel is a wacko !