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July 25, 2011

Silent Alarm

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                                    Silent Alarm

What is severe autism? Severe autism is looking into the eyes of a child who does not return your gaze, but may see more than we do. It is handing a toy to a child, but the toy appears uninteresting, but somewhere inside, he’s interested. It is telling your child you love him, though he appears not to listen, but is hearing every word you say. It is hugging your child as they recoil, but at the same time need your touch. It is also sacrifice, suffering and solidarity. And alienation, affliction and anguish, wrapped in a tight ball of silent alarm.

Severe autism, for the individual, is a brain on hold, on hope, in low and high gear, darting up, down and around a foreign landscape, shifting shapes, patterns and smells. Severe autism, for the family, is rising every morning and facing the unknown. It is fear of failure to help or protect your child. Anger rooted in a quest for peace, justice and freedom in chaos, injustice and oppression. It is asking. Will today be challenging behaviors, incessant chattering, financial woes or fading friends and family? It is pondering a breakthrough in autism. It is finding antecedents, triggers and etiologies that fuel extreme autistic behaviors.

Severe autism is revolving inside an autism spectrum disorder that has morphed into something radically different than what was first described as severe autism and trying to explain to people your child is NOT the RAIN MAN. And gluten free foods didn’t cure our child. Severe autism is being shocked. Do medical schools teach psychiatrists, psychologists and neurologists to understand severe autism? Or are they content to oversimplify and undertreat severely-autistic children? Are allegedly ‘cured autistics’ an example of misdiagnosed children? Is severe autism curable or treatable? Treating severe autism takes time. Professionals are always in a hurry. Priorities.

Treating severe autism is not yet a human rights or social justice movement. Who takes care of the severely-autistic? Are there programs to handle their delicate and complex needs? Will state agencies ever stop cutting funding for developmentally disabled?

Severe autism is fighting. Have you ever had to fight so hard for something your child needs, you thought you’d faint? You make phone calls. You fax. You attend meetings. You argue. You use logic and reason among unreasonable and illogical people. You find apathy, indifference and cringe under the crushing burden of convincing the unconvincing you are living in a constant emergency.
Severe autism is proving, over and over, your child needs help. Not tomorrow. Not next week. Not next year, at another meeting.

Severe autism is looking into humanity and searching for a shred of compassion. Every year it gets worse, as if policy makers and players want you to just go away. Tell a few jokes. Move on. Let them be. Severe autism is painfully complex. Pampered people don’t like pain, especially you and your autistic child’s pain. These people, these professionals, not all, but you know who, yes, they want severely-autistic children and adults to get well fast, and if they don’t, keep your distance.

When you have to tell your story, they prefer you tell your great-grandma. Don’t post You Tube videos or BLOG about severe autism.

Damn it, you’re making the great and all knowing autism saviors look bad. How dare you. WE say we know what severe autism is, though we willfully know little about severe autism and have spent less than a month of our entire career with a severely- autistic person. And guess what? We don’t have to know or really care in this show: because severely-autistic are mostly silent and we’ve got our agenda and if only people like you-- mom and dad and severe autism advocates-- would just shut up, we could tickle endless ears in our staged sagacity. We could attend and create--without guilt-- our autism task forces, congressional hearings, seminars, symposiums, press conferences, forums and discussions. We could go on talking and writing forever, in the absence of progress. Nobody would question our authenticity or effectiveness outside your insider scrutiny. Damn you severe autism advocates. Can’t you all just go away?

Can we? Should we? No, sorry, we can’t. At some point, the false realities of severe autism shown to the public by an ill- informed media will fade. And the realities of severe autism will shine, so that those who have been hidden and hindered will be heard and helped.

Parents of severely-autistic children have had enough of feel good fa├žades. We can’t stand silent as a parade of imposters infiltrate the autism community. Nor shall we bow to the self-appointed autism elite. We’ve survived too much to play that game. We’re in the trenches. We know how to fight. Remember no pain, no gain? Severe autism is painful. By lifting the weight of it all, there is much to gain.

Yes, severe autism is getting punched again and again, and getting up, bleeding, but confident there is hope and healing ahead. Confident that love is advocacy and protection and everything we strive to achieve for our children with severe autism will someday come to fruition.

Kim Oakley

July 21, 2011

Roller Coaster Rides in Autism

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryOkay so today is July 21, 2011 and this month, like many months living with an autistic family member, has been another roller coaster ride of emotions and challenges. The good news is after yet ANOTHER adverse reaction to anti-psychotic treatment for self-injurious behavior, we have managed to get him "back on track". What we did: We worked hard and fast to stabilize him post adverse reactions. First, we took him doctor to resolve the involuntary tongue movements, throat spasms and tremors that were plaguing our son, and which were causing him to refuse to eat and drink. A shot of steroids resolved some of the tongue edema caused by Abilify. Then, it was a continual quest to resolve on-going throat spasms caused by a previous overload of anti-psychotics given at Emergency Room a few weeks ago for a sudden savage self-injurious meltdown.

This took some time, constant analysis and more research to resolve. Mainly, I pushed for a prescription of Cogentin PO (by mouth) to bring home and give on continual basis, until adverse reactions to anti-psychotics are resolved. Needless to say, the hospital had NOT give adequate doses of Cogentin to REVERSE horrific side effects of anti-psychotics and attending doctor who did NOT understand extra pyramidal symptoms in autistics given anti-psychotics, discharged our son, despite us arriving to pick our son up from hospital, and finding him STILL suffering from a semi-frozen tongue in his mouth (you could hear me yelling down the hall, our home health nurse later told me). Thankfully, after pushing an on-call doctor for another IM of Cogentin before we left hospital, and imploring him to prescribe Cogentin PO at home, we are NOW seeing a much happier, hungrier and healthier autistic son.

Lesson: Autistic patients who are suffering from serious adverse side effects from anti-psychotics may need longer Cogentin therapy than is given for what they may think is only an "acute" reaction. This can be dangerous, as if you don't adequately resolve anti-psychotic reactions, damage can become a permanent long-term health condition. Not good. Make sure you DO NOT send patient home until you have thoroughly EXAMINED patient, especially if patient is a NON-VERBAL autistic patient who is difficult to examine. You just don't ASSUME they are back to baseline. Listen to parents and caregivers who KNOW the patient.

Additionally, after I had spent hours reading research on nicotine patch treatment for aberrant behaviors in autism, I pushed for nicotine patches. On call Doctor (and later psychiatrist) agreed nicotine patch would be a good idea, given our son has had nothing but bad reactions to anti-psychotics for treatment of self-injurious behaviors. Hence, after arguing with pharmacist for coverage of nicotine patch for self-injury in autism ("It IS for behavioral modification", I kept saying) we left hospital with a prescription for Cogentin (1-2mg PRN) and nicotine patches (14mg). Nicotine patches are placed on hip, shoulder or back every 24 hours. We place patch on at about 7am, and remove around midnight, as to avoid sleep disruptions associated with wearing patch at night. So, he's wearing patch for about 15-17 hours day. Thus far, we've seen a dramatic improvement in his behavior, concentration and eye-contact. He's also eating and drinking 95% back to baseline. Yeah! (He lost 10 lbs in the last two weeks from this latest medical and behavioral challenge).

Naturally, we did not want to rush to stuff him with "empty" or "junk" food, so we have been extra careful to give him healthy foods, packed with antioxidants. For example, we started off with "power purees": Purees packed with spinach, blueberries, plain yogurt, pineapple, salmon, raw protein and green drinks. He's also obsessed with applesauce this week. (He hated it last month).

Oh, the great thing about the nicotine patch is it can get wet. That means our son has been able to enjoy his bath and pool therapies while receiving this new therapy.

Meanwhile, we are STILL waiting for our son's social worker (a really great woman who is constantly thwarted by her 'bosses' in her advocacy for our son) to get back to us regarding fact son has STILL not been approved to attend Adult Day Care program I found 6 months ago, despite that having been state agencies job to find program, but that is the way it usually goes. Parents do most of the hard work to find their autistic children proper treatments, programs and education, and then are stifled by bureaucrats who are obsessed with using the "budget crisis" cliche to justify their chronic inaction and ineptitude. As I recall, I have heard the "budget crisis" excuse at least 15 times in the past 15 years. It's a ruse. A con. A diversionary tactic. Parents of autistic children and adults don't appreciate delays and deceptions when it comes to delivering services and supports. Yet, it is something we must face and fight, because, well, what's the alternative?

"Speak up for those who cannot speak for themselves; ensure justice for those being crushed."
Proverbs 31:8 



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  • July 15, 2011

    Can Nicotine Help Autistics with Self-Injurious Behavior?

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    Can Nicotine Help Autistics with Self-Injurious Behavior?

    According to research, nicotine may help autistic persons. Why? Nicotine acts on nicotinic acetylcholine receptors in brain, most notably the ganglion nicotinic and CNS receptor. When the brain is deficient in acetylcholine, cognition declines, thoughts get stuck, frustration rises. Increasing acetylcholine may reduce these symptoms. Nicotine also increases dopamine and norepinephrine in the brain, which aids learning, concentration, memory and relaxation. Moreover, research shows nicotine may repair damaged myelin sheath in autistic brain. The challenge treating severely-autistic persons with nicotine would be mechanism of delivery.

    Smoking cigarettes elevates acetylcholine, but we know smoking is not good for your health. Besides, my son wouldn’t know how to smoke. An alternative to smoking is Transdermal patches to deliver nicotine to the autistic person suffering from self-injurious behavior.

    How do you diagnosis depleted choline in the brain? Usually by doing a fMRI (functional magnetic resonance imaging). My son’s last fMRI showed “blunted choline.” Could deficient choline in his brain be thwarting efforts to treat his self-injurious behavior? After all, if you are in a constant brain fog, no matter how many behavioral interventions, vitamins, herbs or exercise therapies you use to treat SIB, the brain is impaired by this chronic lack of choline.

    Of special interest is the fact anti-epileptic drugs DEPLETE acetylcholine. Up to 30% of autistics suffer from some kind of seizure disorder.

    What’s more is use of anti-psychotics in treating challenging behaviors in autism often causes severe side effects, which trigger more self-injurious behaviors. For example, Tardive Dyskinesia, a disabling brain disorder caused by failure of the brain cells to release acetylcholine and causing involuntary body movements. Tardive Dyskinesia is routinely treated with choline and Lecithin. However, bacteria in some individuals break down choline. As a result, the choline is rendered ineffective and you will smell like a dead fish,” writes Gregory Gore, author of “Defeat Cancer.”

    According to the Keefe Clinic, the hormone DHEA can boost levels of acetylcholine. Huperzine-A is another natural supplement said to raise levels of acetylcholine, thus improving memory. China appears to be the leader in studying Huperzine A.


    Vitamin B-5, also known as pantothenic acid, is important for the synthesis of acetylcholine, according to the Linus Pauling Institute at Oregon State University. Foods containing choline include wheat germ, kidney beans, egg yolks, Atlantic Cod, beef, salmon, peanuts, cabbage and broccoli. Additional research suggests amphetamines increases acetylcholine release via a complex neuronal network rather than simply increasing basal forebrain D1 (dopamine 1) or D2 (dopamine 2) receptor activity. Yet another reason to consider low dose amphetamine with low dose SSRI, as a possible adjunct in the treatment of self-injurious behaviors. Lastly, THC, found in medical marijuana is said to elevate acetylcholine.

    So, as I once again frantically research better treatments for autism and SIB, I find myself asking if my son’s doctors will be open to trying nicotine and/or medical marijuana for my autistic son’s self-injurious behaviors. How long will I have to wait for an answer? How many appointments, consults and evaluations will it take? Will I have to go to battle again? Why is everything a fight? OR should I just go to Wal Mart and buy nicotine patches? And get a medical cannabis card for my son? As of today, his ANGIOEDEMA caused by Abilify, Geodon and Risperdal is under control. Or was it an acute dystonic reaction? Or both? His tongue appeared to be twitching, which caused him to stop eating and drinking. Also, he presented with neck spasms. He was also gagging when he tried to swallow his food. A few days ago, a doctor gave him a steriod injection, to treat suspected angioedema. That reduced swollen adams apple he had, but his tongue was still rolling around in his mouth and twitching in weird ways we've never seen. And his neck still seems rigid (torticollis?). Just horrifying. God, I hate anti-psychotics, but at least now we can say we've exhausted the list of anti-psychotics and there is NO doubt he is hypersensitive to these medications, as I suspect many autistics are, which raises the question of seriously exploring alternatives like medical marijuana and nicotine patches.

    My son is at doctor’s office now with his home health nurse and my mind is racing. I’m on a roller coaster of emotions again. Thrown into that familiar panic mode, until I feel I have at least found two more ways I may help my child—a child who is now a young adult. Will we ever find a cure to this self-abuse? Will doctors ever properly identify and treat what is fueling this behavior? I know it’s difficult for them. My son is a very complex case. Is his SIB rooted in gastrointestinal issues? Brain functioning? Choline deficits? Are we missing something? Why is my son’s self-injurious behavior so difficult to control? How is it that he can go days without SIB, but then have a spontaneous remission? Could it be rooted in a lack of acetylcholine in the brain which cancels out all the vitamins, herbs, exercise and behavioral therapies we try to eradicate self-abusive behavior? How do we effectively treat the “blunted choline?”

    Nicotinic acetylcholine receptors: That’s where my mind is stuck. Am I thinking in the right direction? God give me wisdom. Now, doctor is admitting him to hospital, he’s having some kind of extra-pyramidal reaction to prescribed Abilify again, though Abilify did seem to reduce his self-abuse last week.…. I need to get him off all these meds, but if I do, he may have more seizures, so then what? Do we continue to use anti-psychotics are a rescue medication and then piggy-back it with cogentin and/or benadryl? Or do we just say forget the darn anti-psychotics, let’s restore choline levels in the brain so he isn’t in a constant brain fog? I’m waiting for psychiatrist to call me back. I haven’t heard from the neurologist. The internal specialist did not want to discuss blunted choline. He was more concerned with treating the tongue edema and tremors, which is fine, but that leaves us waiting again. A social worker from hospital called, but she didn’t know what I was talking about when I mentioned blunted choline, nor do I expect her to. All she wanted to know is if we wanted to place our son in a psychiatric unit and I said no way, because “all they do is push anti-psychoticsl” He’s not psychotic. He’s severely-autistic. His brain is deficient in choline. He’s probably in a chronic brain fog. If choline is linked to impaired learning and memory, it is logical to assume that blunted choline is hindering his progress. Ironically, three months I did go to health store and buy Huperzine A, and we saw a dramatic increase in eye-contact and focus. How long does it take to restore choline in the brain? And if he’s on daily seizure medications, wouldn’t that be constantly depleting the choline, leaving us in a constant battle to balance the brain? Surely, there must be a way to bring hope, healing and help for my son. As in common with families raising autistic children, it’s back to research. UPDATE: 8/5/11: Son's self-abuse radically reduced after only two days on nicotine patch. Won't get too excited, though, for now, since we've been disappointed so many times, we will wait for another month to really celebrate! Meanwhile, research looks very promising in using nicotine (no, not cigarettes) in the treatment of autism and challenging behaviors and even in autism for general improvement of brain health. I'm so glad I found this research. I never would've thought of nicotine, until I stumbled across the research on nicotine and autism. Maybe God is listening to our weary prayers after all....



    Nicotinic receptor abnormalities in the cerebellar cortex in autism.

    1.                              brain.oxfordjournals.org/content/125/7/1483.abstract
    2.                              Brain. 2002 Jul;125(Pt 7):1483-95.
    3.                              Brain research Molecular brain research (2004)
                Volume: 123, Issue: 1-2, Pages: 81-90
                      PubMed ID: 15046869
    4.       Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, NC 27710
    1. Findings point to dendritic and/or synaptic nicotinic receptor abnormalities that may relate to disruptions in cerebral circuitry development
    2. http://www.livestrong.com/article/404115-how-to-naturally-increase-acetylcholine/#ixzz1LvRO9Jmf
    3. http://www.scripps.edu/news/press/080906.html
    Source: Amphetamine-stimulated cortical acetylcholine
    release: role of the basal forebrain
    by Arnold HM, Fadel J, Sarter M, Bruno JP.

    July 14, 2011

    Cannabis Treatment in Autism: Funding Needed?

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    Is Medical Marijuana a therapeutic target in treating treatment resistant self-injurious behavior (SIB) in autistic persons?

    As a young mother, I never dreamed I’d have a severely- autistic son who would be punching himself in the face, head and temples for years- with no end in sight-- no conventional drugs or behavioral therapies that ever really help. So, that has pushed me to consider the controversial cannabis, and has me asking: could cannabis cure or reduce SIB? No doubt, treatment resistent self-injury in autism has baffled professionals for years and few treatments available effectively treat it. Even fewer professionals understand severe autism with self-injury and seizures. It's just way out of their scope of expertise. Too many factors. This has led families raising severely-autistic children in circles. Circles of confusion and despair.

    Yesterday, my neighbor pleaded with me to rent a documentary called, “Botany of Desire.” What I saw was encouraging. According to the theory put forth in this documentary, cannabis has unique ability to trick mind into “forgetting” certain memories. Incidentally, behavioral and autism experts claim SIB is a “learned behavior. Once imbedded into memory, it becomes a strong habit, difficult to unlearn and often triggered by multiple antecedents that fluctuate daily.

    See research: “Behavioral theories suggest SIB is a learned behavior…..www.neuropsychiatryatsp.org/LearnPages/LWU_JCML0910.aspx

    Now, consider this news story, “Israelis develop drug erasing long-term memory”. Study noted, “Researchers find way to erase long-term memory in rats without damaging their brains…”

    Source: http://www.ynetnews.com/articles/0,7340,L-3438816,00.html. “The minute you identify a molecular mechanism that is critical for keeping memory going, you identify a potential target for drugs," said a researcher involved in the study.


    If cannabis is capable of tricking brain into “unlearning” or “forgetting” certain memories and behavior, could medical cannabis help autistic persons ‘forget’ how to self-abuse? Or would the mechanism of action be in restoring emotional homeostasis in autistic brains held hostage to impulsive acts of self-abuse? Can cannabis be administered without harming other aspects of brain functioning in autism? These are questions that must be explored if we are to find more effective treatments in autism and self injurious behavior.

    It’s no secret SSRI’s, SSNI’s and anti-psychotics in conventional medicine have proved ineffective in treating intractable self-injurious behaviors.
    Again, we must ask: How would cannabis alter memories and brain function of autistics stuck in cycles of chronic, episodic self-injurious behaviors? This question remains to be answered, though mechanism of action of cannabis seems to target dopamine and serotonin receptors, all of which are involved in SIB. Thus, which receptors involved in SIB are turned off by cannabis?

    Certain cannabis strains are known to increase appetite. Weight loss is not uncommon during cycles of extreme self-injury in autism. Moreover, specific cannabis strains create different effects, so it would seem logical to individually tailor medical marijuana in autism to the unique and specific needs of the autistic individual. This would entail KNOWING the differences between Sativas, Indicas, Hybirds and what EACH strain does. For instance, what if one strain causes dry eyes? And dry eyes trigger self-abuse? Well, then you would not use this strain. But these are scenarios I don't ever hear advocates of medical marijuana discuss. And how can they? They don't understand how complex treating severe autism is. It's not enough to say "we gave our son pot brownies." Oh, really? What strain did you use? How and WHY was it effective? Because the same pot brownie you give another autistic kid, could be an entirely different strain, that affects brain radically different and causes problems.

    Meanwhile, Psychiatrists, neurologists and other health professionals remain content in prescribing drugs like Abilify, Geodon, Zyprexa and Risperdal to autistics with SIB, though these drugs are linked to ANGIOEDEMA, LIVER FAILURE, RETROCOLLIS, PSYCHOSIS, TARDIVE DISKINESIA, PSYCHOSIS, etc…

    Cannabis appears to lack serious aversive side effects, though there is evidence showing certain STRAINS can cause "tics" or "dizziness" or "extreme dry mouth."

    There is also the question of how much cannabis is needed to stop SIB? Or help autistics with epilepsy? How much and how often do you give cannabis to autistics with SIB? Is it 1 gram q (every) 8 hours? Or 1 gram q 12 hrs? Or PRN (as needed). I imagine this all depends on the INDIVIDUAL unique needs of the treated person with autism.
    If medical cannabis does not bring more harm, but rather more healing, then is it not reasonable to seriously study cannabis in treating chronic self-injury in autism? After all, I have video taped evidence of Haldol, risperdal and other anti-psychotics harming my son to the point he ended up in hospital getting Cogentin to reverse adverse side effects of anti-psychotic treatment for SIB. When you've exhausted the list of anti-psychotics used to treat self-injury in autism, you start to panic. Where do you go then?  

    Mary Higby Schewitzer, a paleontologist, once said, “The saddest part about doing science in America is you are totally driven by what gets you funded.” Is there funding to study medical cannabis in autistic persons with chronic self-injurious behavior? If so, my son would be a great patient to study. We’ve got nothing to lose at this point. Every single anti-psychotic has caused severe side effects. Only 5-Htp, dopamine antagonists and other natural alternatives have shown any hope of bringing long-term relief. Serotonin and dopamine levels increase during use of cannabis.

    Interestingly, the American Association of Family Physicians wrote, “Cannabinoid receptors are most prevalent in the hippocampus, cerebral cortex, basal ganglia and cerebellum, which may account for the primary actions of cannabinoids. Very few cannabinoid receptors are located in the brain stem, which may explain why marijuana used in high dosages does not suppress respiration and why it has a high therapeutic index.” Source: http://www.aafp.org/afp/991201ap/2583.html



    Cannabis use for medical purposes is also supported by ‘medical publications, such as New England Journal of Medicine and The Lancet’.

    So why all the controversy? I don’t blame law enforcement officials and some law makers for looking suspiciously at medical marijuana. Just look at majority of people getting medical marijuana cards. It doesn’t take special observation skills or discernment to notice a long line of healthy 20-30 year old males lining up to buy “weed." Clearly, they aren't all there for real medical reasons. Let's just call it for what it is: They want to get high. They use it recreationally, not for medical reasons. And some probably sell it once they get it. This does NOT help the medical marijuana community.

    People with serious medical or behavioral issues do not want to get “high.” They want to be healed. They want relief. They want a chance to live in peace and without debilitating emotional or physical pain. If cannabis studies truly show promise, which I believe it does, than it’s time to apply this in practice, towards helping severely-autistic patients.

    Autism community should advocate more research on how cannabis (especially cannabis high in CBD) could treat autistics suffering from tormenting conditions like severe weight-loss, pain, anxiety, aggressive outbursts and/or self-injurious behavior. I've analyzed a lot of research on medical marijuana and autism. Within a few hours, it was more than clear, strains high in CBD, hold some hope for hopeless cases of autism with severe behavioral issues. It would seem illogical, therefore, to ignore growing evidence that medical marijuana should be considered in the treatment of autistics with severe behavioral challenges that are not responding to conventional treatments.

    Kim Oakley, Mother and Advocate for Better Treatment of Severely-Autistic Persons

    July 13, 2011

    Beyond Tears: Families of Autistic Adults in Crisis

    Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryOk, this will be a bit of a ranting post, since I'm utterly exhausted, both  mentally and physically, despite consuming my gingko biloba, multi-vitamin and jogging 5 x a week to mitigate surreal stress of trying to cope with my autistic son and now, my other son, who was recently in a dirtbike accident, and is lying on my sofa with a broken femur.

    I find myself often beyond words and flying into fits of internal rage where I want to smash my own face with my fists. I can't escape. No matter how hard I try I am continually hit from all sides. No matter how hard I pray, I find God nowhere, aside from episodic, fleeting moments of peace and security, for which I am grateful. But the truth is, I'm afraid to relax or hope too long or be happy, as inevitably, it comes to a crashing halt. Do you ever feel that way?

    Anyway, today I have to bring my autistic son's brother to the doctor to check his broken femur (he was just released from hospital). I am grateful he is alive. When I came upon the dirtbike accident (july 4th), the first thing I saw was the dirtbike under a truck. And his helmet on the road. Imagine what goes through a mother's mind when you witness this scene. Thank God he was alive, though in a ditch, covered with ants. Femur fractured. Paramedics were awesome. Quickly took over. Administered morphine. Stablized his leg with a tool I can't remember the name of.

    So, here we are. Now today I awoke to my autistic son again in another SIB mode, though for past few weeks he has NOT hit himself and to which home health nurses and nobody else can figure out why he's again hitting Though, I know. He's a mess. Angioedema? Stomach pain? Frankly, at this point I have lost much hope in medicine. I have lost much hope in doctors helping. I have a deep resentment and disgust for the entire system, outside of emergency personnel (fire and police) who seem to be the few who actually come to help and do help in times of crisis.

    Don't worry, I'll regroup. I'll keep going. I won't give up, I'm just sharing what I think right now, as so many of us dealing with severely autistic family members may be feeling. It's not just the autistic person. There are others in family who require help. And, no...placing our autistic son in a group home is not the magical answer. Been there. Done that. They almost killed him. Where are you God? Does it even matter to ask? Is this it? Is this our life? Constant emergencies? I honestly hope someone tries to car jack me today, since they will receive a rude awakening. Please, give me an excuse to vent. As I write this, I'm not sure I'm even kidding. Don't worry again, I have an incredible amount of self-control. I have been dealing with extreme, unrelenting stress for 19 years. And I'm still here. Too many people depend on me to give up. Or check out. Besides, I grew up Catholic so suicide is not an option. So, I am now faced with racking my brain again, as we have exhausted the anti-psychotic therapy that is supposed to "help" autistics with chronic SIB. I asked the psychiatrist yesterday, "Now what?" What is left? She's thinking about it. She's a great psychiatrist, but I'm afraid they don't know. They too are left with limited ways to help autism and chronic SIB.
    Well, I am now more convinced than EVER that SSRI's, SNRI's, anti-psychotics are a complete failure in the treatment of chronic SIB and autism. That tells me one thing: It is long overdue that those treating autistics with challenging behaviors need to take a HARD LOOK at other options. As in alternative treatments. Yes, we've tried special diets, behavioral interventions and a host of other alternatives. They work, for awhile, then don't, leaving you in a constant state of anxiety and despair. Meanwhile, autism research is failing to identify the ways to help the most severe cases of autism. They continually hyper-focus on irrelevant issues in autism. People are suffering. Our system serving disabled is in disarray. Only those who fight, as if this were guerilla warfare, can hope to get a crumb of help. Solution? Better treatments. More funding directly to the families and OUT of the hands of the increasingly inept, corrupt, idiotic dipshits running our system and country. Sound harsh? You bet it is, because it's a harsh reality. If you aren't standing where I am, you will think I'm just another angry mother. If you know what I'm talking about, you will understand. You will feel the rage, sadness and urgency of fixing this situation. Of making changes. Of offering help. Of saving those who are ready to jump off a cliff. There is hope. Things can change. Sadly, they seldom do, unless people like me continue to sound the alarm. We must do better. We can do better. There are too many bad people standing in the way of good. They need to be forced out or forced to do their job. Inept professionals waste money. Waste time. Waste lives. And they appear to care less. So be it. We must move around them. Think outside their boxes and cubicles and pens and papers and unending reports that only describe the crisis in the autism community, but seldom deliver tangible help. It's time to stop focusing on the medications that don't help, and too often bring harm. Pharmaceutical companies have failed the autistic population. Research shows anti-depressants and anti-psychotics are largely ineffective for severe autism. Doesn't that sound an alarm? No doubt, I'll be looking seriously into medical marijuana after yet another failed anti-psychotic. But I'm still leary of this medication as well. We still don't know exactly how it works and I am a mother that wants to know how things work before putting them into my son's body. I don't like reading "mechanism of action unknown." Look, if it's unknown, the FDA shouldn't be approving it. It's that's simple. NOOTROPICs should be the primary focus of treating autism and chronic self-injurious behaviors. Then, finding the undetected, undiagnosed medical issues involved in chronic SIB. Autistics don't self-abuse for 19 years for no reason. It's beyond behavioral. There is SOMETHING medical or/and neurological that has yet to be discovered that is fueling this outrageous condition. And we have to find it to treat it. That's where I am stuck. I am not a doctor. I don't have the power to medically investigate undetected internal issues fueling SIB. They have to think outside the box and order tests. Investigate. Call around. Send us somewhere else if they can't find it. I've done and am doing all I can do. I'm one person. I'm trying to juggle so many things. Is it too much to ask that we could solve this problem? My son has been self-abusing for 19 years. We've seen an army of doctors and professionals. We are not looking in the right areas. God help us.

    July 11, 2011

    Autistic behaviors, Antipsychotics and Angioedema: Warning

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    Autism Behavioral Emergencies, Antipsychotics and Angioedema: What Emergency Department Doctors Need to Know!

    I’m presenting this information so caregivers/professionals working with non-verbal, self-injurious autistics can be forewarned of serious residual/elusive side effect and potential medical emergency-- following administration of anti-psychotics in treating self-injurious behavioral meltdowns in autism. Here’s our story.

    Late June, 2011. My severely-autistic, non-verbal son had been smashing self in face and head for 3 days, despite numerous interventions to stop brutal self-injury. Protective gear was in place (karate helmet, Posey Mitts). Temporary restraints were ineffective (during this particular episode, he was so strong, broke out of restraints). 

    Prescribed Rescue Meds Given at home, and which failed to stop self-injurious episode:

    1.    Ativan 2mg      1x  
    2.    Diazepam 10 mg  1x 
    3.    Zyprexa  2.5 mg  1x  
    4.    Morphine (to rule out undetected pain fueling SIB) 2mg 1x
    5.    Benadryl 25 mg  1x (to rule out allergic reaction—elevated histamine—fueling SIB)

    Home investigation included: No obvious mouth sores, dental problems. No abrasions, blisters or lacerations triggering SIB. No recent injury, environmental triggers tied to sudden non-stop SIB. Considered constipation possible factor, as had no BM in 3 days.  Was given suppository. Still hitting after morning BM. Ruled out constipation fueling SIB. Or, possible stomach pain from constipation first triggered SIB, SIB then quickly evolved into full-blown frenzy, even in absence of ORIGINAL TRIGGER, as it common in severe autism. It’s as if autistic person “GETs STUCK” in self-injurious mode. Unclear what is happening in brain for SIB behavior to continue.
     

    Further home investigation noted: No fever. No limping. Eyes clear. Pupils not dilated or constricted. Urine color normal.

    After 3 days of non-stop SIB and repeated failed attempts by several home health nurses and myself to stop SIB, son taken to Emergency Room. At ER, son immediately placed in leather restraints and given Geodon. Geodon failed to stop SIB. Desperate, I suggested doctors re-challenge Risperdal. Risperdal failed to stop SIB. In a state of complete panic that this crazy SIB would NEVER end, I then suggested doctor try Abilify. Abilify snapped him out of SIB mode. UNCLEAR if Abilify or COMBINATION of 3 anti-psychotics flooding brain and tweaking brain chemistry FINALLY stopped SIB (alteration of Dopamine receptors? 5-HT receptors?)

    Ok, so we thought everything was great now, right? Wrong. Within 2 days, we noticed he stopped eating and drinking and his tongue was swollen. Why? We didn’t know. Suspected Extra pyramidal side effects from anti-psychotics. Gave benadryl. No change. Repeatedly tried to give food and fluids. Everytime he tried to swallow, he gagged. Afraid he’d asphyxiate, we immediately switched diet to all soft foods. No change. Still gagging upon attempt to swallow foods. Why? We didn’t know. He became dehydrated. Back to ER.

    At ER again, we encountered a ridiculously inept doctor. Home health nurse and I repeatedly told her to check throat for swelling with more aggressive evaluation. Dismissed our requests, as if we were asking her for a million bucks and ordered a chest x-ray, his 7th in two years. Why is it EVERY time my autistic son goes to ER they order a chest x-ray? Stop. Move on.

    Chest x-ray of course normal, as is his temperature and vital signs and CBC (complete blood count, outside of dehydration, low chloride, etc…). IV started to re-hydrate. Well, now we’re onto something….but still NOT resolving why he’s gagging while swallowing (which is totally off baseline for him, by the way, we told latest ER doc). ER kept telling us she “knows about autism.” Whatever the hell that meant, which I suspect means she spent a few moments in clinical with one autistic person 5 years ago or something like that. Anyway, he’s getting the IV and we’re waiting and waiting and waiting and I’m getting really frustrated that ER doctor is NOT taking into consideration his brain was previously flooded with massive amounts of anti-psychotics in the same hospital several days prior and that it is probably the “etiology” of what is happening to throat, as in larynx edema, etc…She dismisses my theory. Discharges him and writes his condition was “cough.” What? I don’t even have the energy to argue over such idiocy. See yaw. So we leave. We get home. He’s hydrated, but he’s still not eating or drinking much, which is no surprise, since the brilliant ER doctor who allegedly knows autism, knew not enough to identify signs and symptoms of something quite serious, following anti-psychotics. Of course, I didn’t know the name of such condition, but I’m a mother, not a doctor, so don’t expect me to. That said, I figured, what the heck, I’ll do my own research. Diagnose him my damn self, I’ve had it.

    I spend 5 hours researching, cross-analyzing signs and symptoms, putting the puzzle together. I finally decide it’s something call angioedema and guess what? I was right. Don’t bother to clap, I’m not saying this to impress anyone, just to warn you that sometimes you have to find the answers yourself, and that is one sad situation, since the majority of parents caring for autistic persons have enough stress and grief in their lives and the last thing they need is for some arrogant, dim wit doctor to fail to get off her ass and analyze and investigate what’s wrong. You can’t treat a patient if you don’t know what’s wrong. Maybe that was the plan. Get him hydrated. Get him the heck out of here so we don’t have to deal with him or his mother.

    So, I suspect angioedema. It’s soon confirmed by Chiropractor and internal medicine specialist. My son is then given a shot in his butt. Steroid shot. This brings some relief (about 40% more eating, drinking, but he’s still not back to baseline). I put in another call to another doctor. Ask about more aggressive treatment for angioedema. I also call psychiatrist office and inform he’s had this reaction to combination of anti-psychotics. I’m still waiting for call back.

    Lesson: Whenever you give NON-verbal autistic patient massive amounts of anti-psychotics, or even mild doses, be AWARE of possible angioedema. One of the ways I diagnosed this condition is a simple internet search of each name of each anti-psychotic paired with the word “throat swelling” and “not eating” and “edema” and a few other keywords I forgot in my obsessive search to find the problem.

    Research CLEARLY shows cases of ANGIOEDEMA following administration of guess what? Yep, you guessed right. Geodon, Abilify and Risperdal are ALL linked to causing ANGIOEDEMA. So, next time you have an autistic person who suddenly stops eating or drinking following anti-psychotic treatment, consider ANGIOEDEMA. It’s a very serious condition that warrants IMMEDIATE treatment, not a chest x-ray and discharge papers.
    **
    Premature discharge from the ED should be avoided. Patients presenting with minor symptoms of angioedema without progression after 4-6 hours of observation may be safely discharged home on a short course of steroids and antihistamines. Patients should be provided with an epinephrine auto-injector (EpiPen) at time of discharge



    TREATMENT of ACQUIRED (ie…drug induced) ANGIOEDEMA includes:

    1. H2 antagonists like Doxepin (a tricyclic antidepressant, anxiolytic  (EXTREME caution giving too much, as can exacerbate aberrant behaviors in autism and lower seizure threshold)

    1. Anabolic steroids (danazol) Danazol is a modified testosterone


    1. C1 eserase inhibitor or Kallikrein inhibitor (ecallantide) a protease that frees up peptides involved in angioedema and a selective and reversible inhibitor of enzyme plasma kallikrein. Source: www.ncbi.nlm.nih.gov/pubmed/20830315

    1. Subcutaneous epinephrine if trouble breathing


    1. Antihistamines (H1 blockers)

    1. DO NOT use Beta 2 adrenergic agonist (research shows ineffective for angioedema)


    1. Narcotics (lowest dose possible to mitigate pain) to quell stomach pain common in ANGIOEDEMA
    MORE RESEARCH ON THIS ELUSIVE condition: www.haeedu.com/view-content/4/HAE-Resources.html 



    Above all acquired ANGIOEDEMA always WARRANTS swift investigation of CAUSATIVE factors so you can DISCONTINUE offending agent. Finally, swift, effective treatment to resolve.
    *******************************************************************************

    Sources showing angioedema linked to antipsychotics:
    1.    There are only a few international case reports related to atypical antipsychotic drug risperidone causing angioedema. We aimed to draw clinicians attention ...www.psikofarmakoloji.org/v2/ozet_eng.asp?ID=329
    2.    Learn about the prescription medication Geodon (Ziprasidone), drug uses, dosage, ... (such as allergic dermatitis, angioedema, orofacial edema, urticaria), ...www.rxlist.com › ... › geodon (ziprasidone) drug center
    3.    The trade name for this third-generation antipsychotic is Abilify®, ... occurrences of hypersensitivity reactions such as anaphylactic reaction, angioedema, ...hsc.unm.edu/.../pdf/Abilify%20Monograph-Benson%207-2005.pdf
    4.
    The following information is taken from the Geodon label
    • anemia
    • angina pectoris
    • ANGIOEDEMA
    5. Angioedema is characterised by oedema of the deep dermal and subcutaneous ... Angioedema/diagnosis; Antipsychotic Agents/adverse effects* ...
    www.ncbi.nlm.nih.gov/pubmed/21112458
    Dec 10, 2007 – Angioedema is a hypersensitivity disorder that presents as edema of the subcutaneous tissues and mucosa, typically involving the upper ...
    www.hcplive.com/publications/resident-and-staff/.../2005-04_02 -
    7. Bulletin of Clinical Psychopharmacology - World's Biggest Open ...  
    There are only a few international case reports related to atypical antipsychotic drug risperidone causing angioedema. We aimed to draw clinicians
    .

    July 2, 2011

    Autism and Medical Marijuana

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    Q. Medical Marijuana and Autism: Is it Worth Trying?

    A. Yes, but with extreme caution. And I’ll tell you why.

    Medical marijuana (MMJ) isn’t completely safe. It has some risks. Case in point: some people who ingest certain MMJ strains DEVELOP ticks, twitches or are thrown into a full blown seizure. Yep, you won’t hear people talk about that. Medical marijuana smokers on websites, however, call this “kibbying.” Here’s an example of an anecdotal report from someone on a marijuana board on net: “It's 9:30pm, I have 4 pages left to go on a paper that’s due in 12 hours. FUN! So what do I do, I get higher than I've been in a long time! Bad idea...I know, but the point is that right now I’m twitching. I always twitch when I get REALLY stoned…”

    Here’s another post on same website from ANOTHER person who got twitches from MMJ. “I got twitching for the first time a while back (after getting very, very high), and it kinda scared me. Really quite bad in my legs and arms, for about 15 minutes. Uncontrollable. Strange. Can't say much more besides I've been there before, but if anyone has an explanation for that, I'm all ears...” Source: http://www.marijuana.com/medicinal-marijuana/2612-ahh-twitching-horrendus-twitching.html



    Interestingly, there’s a real LACK of research regarding MMJ triggering seizure activity. If MMJ advocates want to be taken seriously, they should provide public with better research. Imagine the consequences of an autistic person using MMJ to help rid migraines and instead, they end up having a tonic clonic seizure? I would think one way to prevent this would be to study which strains are MOST likely to cause or trigger seizure activity and slap these strains with warning labels. What are strains?

    Medical marijuana (MMJ) comes in 3 strains: Indica, Sativa and Hybrids. Hybrids are a mix of both and are either “indica dominant” or “sativa dominant.” Example: A Hybrid could be 70% Indica/Sativa 30%  or 70% Sativa/Indica 30%

    MMJ users report sativa strains have anti-depressant affect, treat chronic pain, increase focus and enhance creativity. That’s if you’re not hallucinating, paranoid or having a psychotic episode, I suppose. Most sativas are higher in THC. MMJ users report sativas good for low grade pain, anxiety, nausea, energy and body buzz. Apparently, a body buzz feels good. Unclear if “body buzz” would scare or comfort an autistic person. I noticed users describe MMJ sativas as having side effect of “clear head” or “fuzzy.” Good information, as I would not want to use a MMJ strain for my autistic son that caused fuzzy thoughts. We’re aiming for clear thoughts here.

    Indica strains: Reported to be more sedating, used for acute pain, muscle relaxing, insomnia, nausea and anorexia. Some indica strains stronger than others. Marijuana users describe stronger strains causing “couch lock.” This means you are so high you apparently sit on a couch and can’t move. Not my idea of a good time. And certainly not what I would want for my autistic son, unless he was in a self-injurious behavioral mode unresponsive to conventional treatments and causing bodily harm.

    Research shows human brain has Cannabinoid receptors. CB1 receptors target hippocampus, limbic system and basal ganglia and have anti-convulsive effect. CB2 receptors are found in immune system and have an anti-inflammatory effect. As per research, it appears strains HIGH in Cannabidiol (CBD) would be the more medically sound strains. Strains high in THC increase social anxiety and isolation, clearly not what you want for severe autism. Cannabidiols also act on 5HT1a receptor, which is a receptor targeted by antidepressant drugs and leads to the uplifting, pain modulating effect.

    So: Cannabis sativa is higher in THC. Cannabis Indica is higher in CBDs.  Again, I would NOT suggest giving strains high in THC to an autistic person with epilepsy. THC causes hyperexcitability in brain. NOT good for epileptics.  For a good video that talks about strains high in CBDs, I found this: www.youtube.com/watch?v=qroKHwQEVl8


    Also this website has info: http://projectcbd.org/
    The truth is, HALDOL, Risperdal, Zyprexa and other powerful anti-psychotics, have done more harm than good to the autistic population. Surely, it would behoove autistic patients with serious behavioral and medical issues to have access to medical cannabis with high levels of CBD’s.
    Medical marijuana is also used to as an appetite stimulation for autistics and other challenged individuals who are HIGH RISK for suffering serious medical problems and might need a G-tube (gastrostomy tube) because they won't eat. If medical cannabis helps PREVENT a G-tube, that is a good thing.


    HOW does MMJ interact with frequently prescribed medications, such as Prozac? Nobody really knows. Yet, IF sativa strains target serotonin receptors, for example, might ingesting pure sativa or sativa dominant strains risk triggering “serotonin syndrome”? And, if INDICA strains are thought to elevate dopamine, might someone on a dopamine elevating pharmaceutical be at risk? Too much dopamine can trigger psychosis.

    Consider one study that showed Schizophrenics given cannabis strains high in SATIVA (the strains most likely to raise serotonin levels) had LESS schizophrenic symptoms. WHY? Drugs that increase serotonin decrease dopamine. By reducing dopamine in the schizophrenic brain, you could, theoretically, lessen symptoms. Recall, too much dopamine linked to schizophrenic behaviors. TOO LITTLE dopamine linked to Parkinson’s disease.


    In a study by Pamela DeRosse at Long Island’s Feinstein Institute for Medical Research, schizophrenics who smoked cannabis “had faster brain processing speed, greater verbal ability and better memory than patients who didn't smoke”. However, the study fails to show which marijuana strains smoked, which is important information, since different strains target different brain receptors.

    Caution when using marijuana with autistic people: THC (9-tetrahydrocannabinol), an active ingredient in marijuana, can cause hallucinations, paranoia and psychotic episodes. Yet, there’s something called cannabidiol (CBD) in select strains that reduces psychosis. Strains high in Cannabidiol (CBD) supposedly have anxiolytic and antipsychotic effects. It would seem logical then to consider marijuana strains HIGH in CBDs and LOWER in THC for an autistic patient. Of course the entire idea of medical marijuana for my autistic son is a bit odd, as I’ve always hated pot. The idea of smoking something that makes you hungry and slows your cognition never appealed to me, but I can see how people who are in pain or suffering could benefit from it. Also, when you’ve witnessed Haldol causing your child to go into retrocollis and have a olygiric crisis, you start to look more at things like medical marijuana.


    Still, I’m concerned about how MMJ could trigger seizure activity. Nobody knows why. This is my theory: when the CB 1 receptor is activated by marijuana, it may inhibit GABA release. GABA is what helps quell seizure activity, so if GABA is inhibited, couldn’t that lower seizure threshold? And the more smoked or eaten, the more GABA it would inhibit, thus this explains people reporting they get twitches when “really high.”

    Interestingly, some people mix smoking marijuana with taking valium, as if they are self-medicating. Valium increases GABA in the brain.
    Here’s what one person said on another marijuana site on net: “get this when I smoke and even when I'm sober, I get random twitches which I never had before.”

    Don't know why, but when I pop a xanax before smoking, the twitches don't come. Actually, they don't come at all when I'm on pills.” Source
    : http://www.bluelight.ru/vb/archive/index.php/t-103795-p-4.html.   (Xanax elevates GABA in the brain)
    . 

    To smoke or eat it? Most severely-autistic persons can’t or won’t smoke marijuana, so the mechanism of delivery becomes eating marijuana, which can have a different affect on the brain. For one, when eaten, the onset, peak and duration of marijuana is a lot longer than if smoked.  Secondly, cooking with marijuana can deliver unequal and more powerful doses if not done correctly. There seems to be a lot of studying involved before choosing medical marijuana.

    Evidence showing the mechanism of action of specific marijuana strains is LACKING. Not good. If indeed certain cannabinoid receptors are targeted and do DIFFERENT things, than it’s critical to KNOW which strains act accordingly on receptors in order to prescribe that strain for medicinal purposes! Perhaps there is no big push in MMJ community to do this, because too many people don’t give a rat about the medicinal purposes and are only there to get high, as seen in the long lines of perfectly healthy 20 yr olds entering marijuana dispensaries. Oh well, maybe they have a headache and advil just doesn’t quite do the job. It’s none of my concern, I’m just concerned about if it can help my autistic son not smash his fists into his head.


    Other things you may not know about medical marijuana:

    1.              Synthesized THC is known as dronabinol  or Marinol and sold as a schedule 3, prescription drug
    2.              Synthesized THC is not very effective
    3.              SATIVEX is a drug derived from cannabis plants
    4.              Sativex more effective since it has higher CBD
    5.              Mechanism of delivery for sativex is oromucosal (sprayed in mouth), which could serve as a great rescue medication, if it works, for self-injurious behavioral meltdowns
    6.              Pharmaceutical companies have already entered into exclusive marketing agreements for Sativex
    7.              Sativex is marketed in Canada by GW Pharmaceuticals
    8.              There are female and male cannabis plants. Females are supposedly higher in the good CBDs that help epilepsy, dystonia, etc…
    9.              Endocannabinoid system in brain is responsible for maintaining homeostasis. MMJ targets these receptors
    10.       Prior and current law enforcement officials are rumored to be involved in the medical marijuana business. I guess law enforcement retirement packages aren't too good these days.



    All in all, it seems medical marijuana is a loosely controlled social experiment that I’m not convinced can help autistic persons with serious medical issues like seizures or self-injurious behaviors. I hope it can, as current drugs for autism and SIB aren’t very promising. And MMJ does seem safer than typical anti-psychotics. So, I will continue researching medical marijuana.  It may—if I can pinpoint strains most likely to help my son-- become a good rescue med. Of course that would entail a spray form, as you can’t expect an autistic person slamming their fists into their head to pause, sit down, and eat a marijuana brownie.  Lots to think about here.