Archive for the ‘Asperger’s Syndrome’ Category
Saturday, May 11th, 2013
Some autism regimens are stalwarts that continue to demonstrate improvement (ABAApplied behavior analysis... the science of controlling and predicting human behavior). Some fade away – perhaps even to re-emerge (secretin?). Others hang around until more testing is documented (Memantine). Many can cause harm (Zoloft). A few are useful for specific purposes and so they continue to have a biomedical...a focus on medical and dietary interventions following. Naltrexone treatment falls in the last category.
The medication was approved in the 1990′s for addiction treatments including alcoholism, at a dosage range of 50+ milligrams per day. The thinking is that, if people don’t get high from alcohol and won’t suffer it’s absence, they won’t continue to drink. This is not the same chemical as Antabuse, which turns to formaldehyde and makes you SICK when you drink. Also, it shouldn’t be confused with the morphine antagonists Naloxone and nalorphine.
Nearly two decades ago, Italian researchers wrote, “There is a growing body of evidence that the immune and the central nervous systems interact and reciprocally influence each other… Taken together the assumptions that… the opioid system plays a crucial role in cognitive and immunological functions… and opioid peptides are present in excess in autism; then pharmacological reduction… by treatment with an opiate antagonist might counteract some of the behavioral and immunological disturbances observed in autistic individuals.” With a slightly different ‘low dose’ protocol, improvement was demonstrated “in a subpopulation of autistic children by chronic blockade of opioid receptors with a potent opioid antagonist, supporting the concept of an opioid-immune link in autism.”
In her 2006 report, Dr. Jaquelyn McCandless concluded, “As an effective, non-toxic, non-addicting, and inexpensive behavioral and immunomodulating intervention, LDNLow dose naltrexone is joining our biomedical...a focus on medical and dietary interventions arsenal to help more and more children recover from autism as well as helping anyone with autoimmunethe failure of an organism to recognize its own constituent parts as self, which allows an immune response against its own cells and tissues diseases and cancer.” Her paper was entitled, “Low-Dose Naltrexone for Mood Regulation and Immunomodulation in ASDAutism spectrum disorder”. Sound like anyone you know?
Dr. McCandless’ protocol calls for specific timing (9-11PM) with a naltrexone-compounded cream (in the 1-1/2 to 4-1/2 mg. range) applied to a sleeping patient’s back or forearms. Once, a dad asked if he should also dance around the bed and chant. Funny guy. Which patients? What dose? What are the positive changes? The side effects? For individual patients, in order to achieve the goal of enhanced communication, doctors sometimes vary formulations, frequencies, and timing based on responses.
In my clinical experience, there is one type of autism that clearly disrupts by affecting the patient’s immune system. (How many other kinds of autism? is the subject of another explanation-post). Also, some oppositional behaviors, similar perhaps to an externally chemically-altered state, appear to benefit from this intervention. The major impediments preventing LDNLow dose naltrexone from more common usage are:
1. It’s complicated and so requires parent education and resources.
2. After starting, the therapy requires tailoring to the patient’s responses and the family situation.
3. Patients don’t usually show immediate improvement, it may take up to 8 weeks.
4. Not infrequently, an apparent deterioration in behavior may occur in the early stages of treatment.
Of course, many biomedical...a focus on medical and dietary interventions interventions are subject to these same limitations.
That original naltrexone experience did prove significant and sustained improvement for a targeted, though small, population. For parents who wish to learn more about this subject, the Low Dose Naltrexone website is very informative and the Yahoo Group LDNLow dose naltrexone is a great place to communicate with other users.
Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Chelation, Patient experiences, Reversing autism, Special Therapies | No Comments »
Sunday, April 21st, 2013
This is it, Dr. Udell’s primary office. I want to treat patients for years and years to come, but I don’t want to move any more (got a many year lease). I originally envisioned The Child Development Center of America as a central facility for parents to get answers and therapies. As we have grown, the practice has assumed situations with increasing responsibilities. There are so many disciplines required to achieve an optimal outcome that it seemed that parents would seek such a service and providers would wish to participate.
The reality of the autism spectrum epidemic is that there are so many moving parts required that the various goods and services really can’t exist in any one place. My colleagues around the country seem to be experiencing a similar situation. Some ‘DAN!’ practices combine general pediatric services (adult treatment, even), usually requiring the support of health insurance personnel. Universities and their associated clinics such as The MIND Institute generate a great deal of research. Other practitioners take on therapies requiring added responsibilities such as OSHA or other regulatory agency’s oversight and approval. Some practitioners teach and leave well-trained staff to experience more participation in patient care.
ABAApplied behavior analysis... the science of controlling and predicting human behavior, OTOccupational therapy... enables people to participate in the activities of everyday life, PTPhysical therapy, S&LSpeech and language therapy and the myriad of therapies that aid improved outcomes tend to be local, even in people’s houses, and take time. Alternative protocols take time and resources. For most families, there is also homework to get through and school projects, etc. At this time, the multidisciplinary village that attends to developmentally challenged children is the iPhone scheduling system of diligent moms and dads; even if they are separated, as are the great majority of ASDAutism spectrum disorder families.
The Child Development Center has settled into a really comfortable, brand new office in Davie, FL (think Bergeron Rodeo), with friendly neighbors and easy highway access. The same fish tank, toys and toy box. Even more cameras and flat screens. There’s an even better railroad station playroom for the kids and a new computer station. (Parents, please tell us when you don’t want the children exposed to Wii or TV, and we will hide those amenities). In such a comfortable setting, we get to observe the patients enjoy the experience and be as much like their normal selves as possible.
The medical conditions falling under the autism diagnosis now affect more than 2% of infants, children, adolescents and adults. The disorder is nearly a complete mystery. Is it genetic, or the environment? Or both? Is it really even an epidemic? Presently, there are so few doctors who choose to study in this specialty. The pediatricians, neurologists, psychiatrists, allergists, gastroenterologists, dermatologists, immunologists, geneticists, and epidemiologists agree on very little. Parents turn to treatments with less scientific testing or validity and unknown risks.
My purpose has become more simple. Autism spectrum disorder is a combination of signs and symptoms that, if recognized early and properly treated by appropriately trained medical personnel, is amenable to effective treatments that are available today. Physicians can be an important part of the team that helps recover form and function. The Child Development Center hopes to serve as a model to help other doctors assume ASDAutism spectrum disorder care.
In a previous story, I took great pride writing about my beautiful office and friendly staff. That has not changed. Only the location – we’re just down the street.
Tags: ADHD, advice, ASD, asd advice, ASD advise, ASD etiology, Attention deficit, autism, autism advice, autism advise, autism cause, autism cure, autism etiology, autism puzzle, autism treatment, casein free, CF diet, Complementary and Alternative Medicine, DAN doctors, diagnosis, doctors curing autism, medical doctor, Pediatrician autism, pediatrician treating autism, remove toxins, vitamins autism
Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Patient experiences, Reversing autism, Special Therapies, Speech and Language | No Comments »
Sunday, April 7th, 2013
I recently met one of the most interesting parents that I’ve ever interviewed. This is a mom of a 5 year-old ‘spectrum’ child seeking help because she didn’t want him to “experience the same difficulties that I had at his age.” Mom seemed quite typical to me, so I asked, “What kind of problems did you have?” She used to be obsessed with airplanes, drawing them, reading about them, thinking about them, and watching them. She didn’t have any friends, and other children didn’t understand her. She was bullied. That is why she was bringing her child to see me, so he didn’t have to suffer those same problems. I asked her when she first got a joke, and she replied that it was around when she was 18!
“You know, I am married now with 2 kids, and sometimes,” she told me, “I will be writing a check for my husband’s business and all of a sudden I will find myself thinking about airplanes, or I will see a pattern on the ceiling and I have to follow it until the end. After that, I’m fine.” After a thorough interview, It seems to me that this person was a cured Asperger’s patient! She made good eye contact, had a husband and friends, and didn’t consider her past as any deterrent to her present life.
Because I had the good fortune to work with a child psychologist for the past couple of years, I saw many ‘Aspies’ coming through our office. The main lesson that I have learned is that, just like there isn’t one kind of autism, there isn’t one kind of Asperger’s presentation.
It has been more difficult, in many ways, to help Aspies than ASDAutism spectrum disorder patients, because the symptoms are more vague and there isn’t necessarily a consistent medical history. Even the incidence of this disorder varies widely. According to one paper, “A 2003 review of epidemiological studies found prevalence rates ranging from 0.03 to 4.84 per 1,000, with the ratio of autism to Asperger syndrome averaging 5:1… combining this with a conservative prevalence estimate for autism of 1.3 per 1,000 suggests indirectly that the prevalence of Aspergers syndrome might be around 0.26 per 1,000… Part of the variance in estimates arises from differences in diagnostic criteria. For example, a relatively small 2007 study of 5,484 eight-year-old children in Finland found 2.9 children per 1,000 met the ICD-10 criteria for an Aspergers syndrome diagnosis , 2.7 per 1,000 for Gillberg and Gillberg criteria, 2.5 for DSMDiagnostic and Statistical Manual of Mental Disorders-IVIntravenous - into the veins, 1.6 for Szatmari et al., and 4.3 per 1,000 for the union of the four criteria. Boys seem to be at higher risk for Aspergers syndrome than girls; estimates of the sex ratio range from 1.6:1 to 4:1, using the Gillberg and Gillberg criteria.
There are several realizations that have become apparent as more patients are recognized and seek biomedical...a focus on medical and dietary interventions intervention. First, the diagnosis is often historical. Rather than exhibiting the usual red flags that ASDAutism spectrum disorder babies demonstrate, most patients are pretty routine infants and toddlers, but as the children enter preK, problems start to emerge with lack of focus, anxiety and immaturity. Parents often report that the children used to have friends, but become more and more isolated over time. Similarly, the medical history indicates that affected patients “used to make eye contact,” which diminishes over time. They become more and more fixated on singular activities and interests throughout childhood and, by adolescence, affected patients are pretty much ‘loners’ who have seen psychologists, psychiatrists and other specialists. Frequently, several medications have been tried, and patients often present on more than one medication to address focus and anxiety.
Second, not all Asperger’s patients are ‘high functioning’. Although their particular interests may make them experts in dinosaurs or bugs, they do not behave well in school, or in most social situations. Furthermore, low self esteem and anxiety can often interfere with even the most mundane situations. Parents frequently report that getting ready for school in the morning is a nightmare.
Third, autistic patients don’t outgrow ASDAutism spectrum disorder and then go on to become Aspies. Patients who demonstrated core problems with social isolation, repetitive movements, and social isolation as toddlers, but develop more skills and abilities towards an optimal outcome in their preteen years are recovering autistic patients, not Asperger’s individuals. This is important because regressions in ASDAutism spectrum disorder patients often respond to the usual biomedical...a focus on medical and dietary interventions interventions of G-IGastro-intestinal (stomach, small intestine; large bowel) treatment, alleviation of allergic problems, or mitochondrial under-functioning.
Lastly, it appears that the more the affected individual is aware of their condition, the better their outcome. Anxiety is reduced and self-esteem can improve as the patient becomes more aware of why they are different from others. Many Aspies object to combining their diagnosis to the whole ‘autism spectrum’ as will be documented in the new DSMDiagnostic and Statistical Manual of Mental Disorders 5. Combining ASDAutism spectrum disorder, PDD-NOSPervasive (or Persistent) Developmental Delay, not otherwise specified, and Asperger’s syndrome might be a medical mistake. Is Asperger’s Syndrome a form of autism? When we combine 2 or more diagnoses that we don’t understand, couldn’t that make us twice as ignorant?
Tags: advice, ASD, asd advice, ASD diet, ASD etiology, Asperger doctor, Attention deficit, autism, autism advice, autism cause, autism cure, autism etiology, autism puzzle, autism treatment, Complementary and Alternative Medicine, curing Asperger, DAN doctors, doctors curing autism, medical doctor
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Sunday, March 31st, 2013
30º angle
Search Engine Statistics @ TheAutismDoctor.com indicate that many readers come to this venue looking for ‘B12 shot’ information. Since you can read that first round of explanations here, I will use this post to add to our B12 frequently asked questions knowledge base.
Can you have too much? I had the opportunity to hear Dr. Neubrander‘s opinion about this at the recent MAPSMedical Academy of Pediatric Special Needs-Fellows achieve a certain level of training and participation in treating the biochemical abnormalities associated with ASDAutism spectrum disorder and other disorders. conference. He compared responders with higher-than-expected levels of vitamin B12 to insulin resistance in diabetes mellitus; where pharmacologicThe amount of a substance needed to achieve results
U-dictionary dose, rather than physiologicThe amount of a substance that the body produces to achieve an effect. U-dictionary dosages of sugar-lowering hormone may be required for optimal effects. Interestingly, drugs such as Prevacid and Tagamet, which are frequently prescribed for many ASDAutism spectrum disorder patients with GERDGastroesophageal reflux disease-a condition in which the stomach contents leak backwards from the stomach into the esophagus, can interfere with B12 absorption. Furthermore, when there are problems such as stomach and small intestine disorders, B12 levels may be reduced, reducing cognitive function.
According to the National Institutes of Health Office of Dietary Supplements ”no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals”. In clinical trials, vitamin B12 supplementation did not cause any serious adverse events when administered in very high doses for 3 to 5 years. When there is kidney failure, liver disease and some blood diseases, B12 levels can be high, but it’s not the other way around.
High cobalt levels (as in methylcobalamin, as in MB-12) have also been reported as possibly leading to neurologic symptoms. Some artificial implants in adults have been implicated. In one study examining metal levels, cobalt was not implicated as a factor in autism, however. Other reports did not show significantly elevated blood or hair levels in ASDAutism spectrum disorder. And, recent papers even reported a slight decrease in cobalt in ASDAutism spectrum disorder patients. Possibly, the bottom line is to measure blood cobalt in patients receiving ‘shots’ who are not responding, but getting plenty of MB-12.
What is the best way to administer MB-12? Since it is a water soluble vitamin, getting the compound into the body is pretty straight forward. Sublingual, intranasal spray, liquids, gummies and lollipops will all raise the MB-12 levels. However, excretion is very prompt and so repeated doses throughout the day (and night) would be the only similar manner to the subcutaneousUnder the skin route. There isn’t literature other than anecdotal information that documents similar improvement to the preferred route. Even the advertisements for Dr. David’s Original B-12 Patch only claim superiority to pills.
The subcutaneousUnder the skin injection is the most common, documented, successful method of administration. Our experience at the Child Development Center has been that expensive anesthetic creams such as EMLA are rarely required or even that helpful. “After the child falls asleep, apply to the skin, mark the area and wait 45 minutes?” Many a parent has fallen asleep themselves waiting for that. The idea is to get the liquid into the most likely tissue to let it leak out into the circulation, so a 30º angle with a tiny needle into the upper outer area of the buttocks is great.
If this preparation works, it should be thought of as insulin to a diabetic. For some reason, those parents, and the children, accept that reality (of shots) more freely. So, the parent who complains that “Every time we even enter the room, he wakes up,” or “It’s impossible to give it to her,” is simply in denial. If you want the child to improve, and B12 shots have a fair chance of being part of that improvement, then do what is necessary.
Tags: advice, ASD, asd advice, ASD advise, ASD diet, ASD etiology, autism, autism advice, autism advise, autism cure, autism etiology, autism puzzle, autism treatment, b12 autism, Complementary and alternative treatments, DAN doctors, doctors curing autism, heavy metals, mb-12, methyl b12, methylcobalamin, Pediatrician autism, pediatrician treating autism, vitamins autism
Posted in >ALL<, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Chelation, Diets, Reversing autism | 1 Comment »
Saturday, March 9th, 2013
In addition to the previous ’frequently asked questions about autism’ blogs, and in a continuing effort to present the problems that most concern parents about their autistic child, here are some more commonly voiced queries:
Q: How can I stop those annoying stimsStimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement.Stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner...known in psychiatry as a "stereotypy", a continuous, purposeless movement.?
A: First, parents need to decide why the child is stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement.. As I previously described, stimsStimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement.Stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner...known in psychiatry as a "stereotypy", a continuous, purposeless movement. are mostly communication, so caretakers want to better understand what the patient is trying to say. Try duct-taping your mouth, and tell me that you wouldn’t make unusual-appearing movements of the rest of your body and head, or make vocalizations.
The more annoying that the parent considers a stim, the more likely that the child will use that to gain your attention. “Is something wrong?” “Do you want something” “Let’s go over here and play with this.”
If the child is stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. because of boredom, try directing to a purposeful activity. If the stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is due to excitement (watching the same part of a video), try re-directing to a different activity. Children are not learning when they are watching the same video over and over. Discontinuance is best accomplished by saying, “You can do that 1 more time,” or “3 more minutes,” rather than saying “Stop doing that!”
Finally, learn to pick your fights. I have witnessed behaviors that only bother one parent, don’t appear to disrupt, or aren’t even much different from what neuro-typical children do. These are the behaviors that can be ignored. Don’t forget, with time, stimsStimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement.Stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner...known in psychiatry as a "stereotypy", a continuous, purposeless movement. will appear, change in complexity or character, re-appear, morph into something else and mostly disappear.
Q: Why are these biomedical...a focus on medical and dietary interventions treatments interfering with the child’s academic situation?
A: When children are made to ‘wake up’ from their autistic fog, the world becomes more annoying, and focus is difficult. Most biomedical...a focus on medical and dietary interventions interventions cause an initial period of difficulty for the patient. As there is increased awareness, anxiety can become a problem. Focus and anxiety highlight immaturity, and so behaviors can deteriorate.
About their child’s change in behavior, one patient complained that, “I traded black and white for shades of gray.” Hey, that’s what life is about. Two year-olds tantrum, three year-olds test your patience, and 4-5 year-olds learn to manipulate their parents. Do you really want to go back to the time when your good little boy didn’t bug anyone?
This is why biomedical...a focus on medical and dietary interventions interventions that improve the patients’ health and well being must be combined with traditional therapies such as Speech and Language and ABAApplied behavior analysis... the science of controlling and predicting human behavior. Since Dr. Spock, there have been volumes written about how to raise a ‘normal’ child. One or two books describing what to do about a particular behavior or type of autistic child only scratch the surface of what it takes to raise ASDAutism spectrum disorder-affected children. We all know that there are many types of autisms, meaning that there are multiple reasons for the behaviors that complicate development.
Q: How can we finally get our child to use the bathroom?
A: The first step in toilet training is producing a healthy gut. If the pH of the poop is in the acid range, it’s almost impossible for a patient to NOT withhold. To test that theory, put a drip of vinegar on your rectum and see what happens. Constipation is best helped with more fluids, fiber and probiotics. If the child can’t ‘go’ after 2 days, I prefer glycerin suppositories (Miralax is a no-no). Loose, wet, frequent stools need to be evaluated for bacterial content and yeast, with appropriate treatment depending on the results of testing.
After ~3-1/2 years, I find that the best method is to take advantage of autistic patients’ love of schedules. Take the number of times that the child ‘goes’ per day and add one. So, a child who produces, say, 2 stools per day should be put on the potty 3 times throughout the day. Start with only 5 seconds and work up to 30-60 seconds of just sitting there. More time is unnecessary (and boring – leading to opposition), as is constant prodding and rewards for compliance. Same times – every day – on the potty – and voila, many children will get the idea.
I am sure that other parents and experts have their solution, so feel free to post them if you have experience with further suggestions.
Tags: advice, ASD, asd advice, ASD advise, ASD diet, ASD etiology, autism, autism advice, autism advise, autism cause, autism cure, autism treatment, Complementary and Alternative Medicine, DAN doctors, doctors curing autism, medical doctor, pediatrician treating autism, vitamins autism
Posted in >ALL<, Asperger's Syndrome, Autism Therapies, Diets, Patient experiences | 1 Comment »
Tuesday, February 26th, 2013
Don’t you just love it? An ADHDAttention deficit - hyperactivity disorder patient was (finally) doing really well on 20mg of medicine in the AM, plus 10mg in the afternoon. It took months to fine-tune the correct medication, dose, and timing. Everything was going well and then the insurance company intervened with the following ‘recommendation’ from their protocol committee, “Change the medication to the generic form, change the dose to different dose (either a lower or increased amount) of a long-acting formulation, and therefore change the timing.” Of course, the parents don’t HAVE to change what was working, the company just won’t pay for the therapy to be delivered that way.
Thank you, NoGo Insurance Company. Your complicated explanations are neither welcomed, nor helpful. In fact, such a recommendation creates extra work for the family and physician, and chaos for the patient. Often, costs go up as we try to adjust to the new meds. The money that gets saved is because of deals that the company had cut with the drug maker. How about negotiating with pharmaceutical manufacturers so that the patient gets to take the medications that are already effective?
This is a uncomplicated example of a single medication given for ADHDAttention deficit - hyperactivity disorder. You can imagine, therefore, the complex decisions that are involved in patients with ASDAutism spectrum disorder. There are the determinations about which therapies to fund, what meds are required, which doctors to reimburse, and the educational environment. The autism epidemic has created an entirely new set of circumstances about which the insurance companies know NOTHING. However, they continue to operate with the same set of rules and in the same universe as conventional pediatric care.
One study reported “It can cost about $3.2 million to take care of an autistic person over his or her lifetime. Caring for all people with autism over their lifetimes costs an estimated $35 billion per year.” A summary of how individual states handle services can be found here. Perhaps surprisingly, the therapy that my patients are least likely to utilize is ABAApplied behavior analysis... the science of controlling and predicting human behavior, which has been proven to help. Even though it is part of the allowed treatment options in selected states, companies apparently balk at payment, by providing few baseline dollars.
The combination of biomedical...a focus on medical and dietary interventions and traditional therapy is a powerful solution that can significantly reduce the time that it takes for children to recover, or at least become mainstreamed. The well published >$40,000 per child per year EXTRA that it takes to care for a child on the spectrum equals $200K for 5 years. Therefore, we must make the diagnosis as early as possible – before 3 years – and not “wait ’til the child is older”. Most children could be mainstreamed by 8 years and that could save hundreds of thousands of dollars (over a lifetime) with a superior outcome.
There are two major reasons why the paucity of insurance coverage presently exists. First, the insurance company doesn’t really pay much attention, because the epidemic is so new and they haven’t historically covered any amount – so they don’t see the savings. Second, the conventional medical community is still arguing whether there even IS an epidemic, whether ASDAutism spectrum disorder is a genetic condition, whether this condition is treatable, and whether the patient can recover. You want best practices? Use the work of Dr. Martha Herbert, Dr. Doreen Granpeesheh, The University of Washington, Dr. Richard Frye, and Columbia University’s Dr. Michael Gershon. We need a new paradigm, and that starts with pediatricians, neurologists and psychiatrists understanding that kids can get better – as reported in the recent literature.
Most of us won’t have access to the powers-that-be in health insurance companies and get them to listen and cooperate. But doctors, if you can’t help us, please stay out of the way.
Tags: ADHD, advice, ASD, asd advice, ASD advise, ASD diet, ASD etiology, Attention deficit, autism, autism advice, autism advise, autism cause, autism cure, autism etiology, autism puzzle, autism treatment, Complementary and Alternative Medicine, Complementary and alternative treatments, DAN doctors, doctors curing autism, Hyperactivity, medical doctor, Pediatrician autism, pediatrician treating autism
Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Earliest Red Flags, Patient experiences, Reversing autism, Speech and Language | 2 Comments »
Sunday, February 17th, 2013
There is an important skill that every child with ASDAutism spectrum disorder needs to learn and practice – going to the doctor. I have several patients who have actually been expelled from their practitioner’s office for disruptive behavior, including the neurologist and pediatrician! That’s pretty extreme, considering that the medical specialist should be familiar with what happens when any child enters the terrifying atmosphere that promises fear, discomfort and pain.
So, when a patient who suffers from difficulty with receptive and expressive language is taken to a place of such foreboding, it isn’t difficult to imagine the anxiety and agitation that will inevitably accompany that fateful trip. Often, the child has been prodded and ‘stuck’ many previous times, then gets placed in rooms with strangers, too much light, unusual noises and odors that make even the most neuro-typical adult tremble in anticipation of the too familiar or the unknown.
Whether it is the ER, the pediatrician’s office, or another exam room, the child’s behavior will have a profound effect on what the practitioner decides is wrong and how to proceed. If the child is screaming and acting out from the onset, the doctor may not even have the opportunity to listen to the parents’ story, let alone perform an adequate physical exam. Patients who otherwise may not even have a fever or rash may develop symptoms just because of the unusual atmosphere. How can a doctor decide if the eardrums are inflamed when merely placing the speculum into the patient’s ear canal causes so much agitation that the procedure itself leads to irritation and redness? Listening to the heart and lungs becomes a futile effort in a sensory-heightened, fleeing individual.
To be sure, there are measures that professionals can take to mitigate the impending storm. The office environment should be designed to be more serene with soothing lighting and relative quiet when possible. The child should be provided with an area to play and get accustomed to the surroundings. It is desirable to schedule the most disruptive patients when there are more staff members to assist and fewer strangers in the waiting room.
The doctor needs to speak with the family first, and let the child get used to the situation. The clothes that professionals choose don’t have to be the white or blue uniforms that suggest bodily invasion. Forget about lab coats, and neckties are an unwelcome distraction (and, they become very uncomfortable when pulled or urinated upon). Because ASDAutism spectrum disorder children are often smarter than outsiders believe, it is very helpful to speak in a matter-of-fact manner, even to the youngest or least aware patients. Finally, I let my kids touch and play with the medical equipment before applying it to their body. This trick has resulted in the need to replace some equipment; but with the help of eBay, it’s not too expensive.
Parents can also do things that will assure a more effective visit. First, please purchase a toy doctor’s kit (no small parts, of course) and have the children practice. Second, ask the therapists to rehearse a physical examination. If the child can’t tolerate such a mock exam, it’s not going to improve when the real thing occurs. Next, the family’s ability to provide a calm and reassuring pre-trip experience is paramount. Statements such as “This is the nice doctor” or “This doctor isn’t going to hurt you” are rarely believed. Finally, the visit is really not the time to correct minor problems (“Sit up straight”) or show off behaviors (“Show the doctor how you…”). Such requests are confusing and only serve to increase anxiety.
A thorough interview with the family and effective physical examination will ultimately have a positive effect upon your child’s health. There is less likelihood that unnecessary antibiotics will be prescribed, just to get the patient out of the office. There is more opportunity to arrive at an accurate diagnosis. For autistic children who cannot speak, it is the best chance that the practitioner will see the child as a whole human being and think about what is going wrong to cause ill health.
Tags: advice, ASD, asd advice, ASD advise, ASD diet, ASD etiology, autism, autism advice, autism cure, autism etiology, DAN doctors, doctors curing autism, medical doctor, oppositional behavior, Pediatrician autism, pediatrician treating autism
Posted in >ALL<, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Patient experiences, Reversing autism | 3 Comments »
Saturday, February 9th, 2013
“The teacher said that my child doesn’t listen… The Speech and Language therapist said to use only one language… The DAN! Doctor wants my child to take… The OTOccupational therapy... enables people to participate in the activities of everyday life said that the child needs practice… My in-laws say that nothing is wrong… I read something on the Internet about… Somebody-I-know-who-knew-someone-with-autism-who-got-better said…”
AutismSpeaks keeps telling us about genetics. Alternative doctors continue to offer chelationinvolves the administration of agents to remove heavy metals from the blood. NAET practicioners say that they can get rid of a child’s allergies and help autism. Chiropracters. Neurofeedback. Neuromuscular Reflex Integration. Hearing therapy. Hyperbaric Oxygen chambers, hard and soft.
Have you heard about the study on stem cells? Is that the same as IVIG? How about the research on Bumetanide, Spironolactone, Actos, Secretin, Namenda, Baclofen, Biotin, Folinic acid, NAC, DMGDimethylglycine, a precursor of Glutathione, TMGTriimethylglycine, a precursorA building block of another substance of Glutathione, SAM-e and B12 ‘shots‘? Do I know about MMS for autism?
The pediatrician wants to keep putting the child on antibiotics. The neurologist suggests Risperdal to improve behavior. The psychiatrist is thinking Abilify. The teachers think that Adderall would do the trick. Intuniv is touted as a helpful medication. The dermatologist says that the rash is eczema. The allergist advises steroids. The gastroenterologist wants to do an endoscopic examination, and give Miralax in the meantime.
Parents are often counseled that stimsStimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement.Stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner...known in psychiatry as a "stereotypy", a continuous, purposeless movement. should be ignored. The Son-rise program advises joining the child’s unusual repetitive behaviors. There are numerous supplements to address symptoms; including taurine, GABAgamma-Aminobutyric acid, the chief inhibitory neurotransmitter in the nervous system (Wiki), CoQ10, carnitine, carnosine, vitamins and minerals. Speak™ for speech. True Focus for focus. There are protocols for immune system support, G-IGastro-intestinal (stomach, small intestine; large bowel) system support, and brain support. Want more? Treatments have been advocated using fecal transplants and even parasitic worms.
Then, there are the diets. GF/CFGluten free and casein free dietGluten free and casein free diet, The Some-Other-Food-Specific Diet, Low Yeast Diet, The Blood Type Diet, Low Oxalate Diet, Specific Carbohydrate Diet, The Feingold Diet, Organic foods, and Dr. Udell’s diet. Oy veyan exclamation of dismay or exasperation ... (Wiki)an exclamation of dismay or exasperation (Yiddish).
Studies have shown that ASDAutism spectrum disorder patients can get better, and we know people who have. Older literature indicates that individuals don’t really lose the diagnosis, a self-fulfilling prophecy that explains such a belief. The cause has been ascribed to inflammation, the environment, mercury, lead, aluminum, plastic, etc. Research indicates that the problem is mostly in the brain, while distinguished professor Martha Herbert teaches that ASDAutism spectrum disorder is a whole-body disorder.
Hello! Is it any wonder that parents are so confused about what to do with a non-typically developing child? We can’t even agree on a diagnosis. Is it Asperger’s, ASDAutism spectrum disorder, Severe, High Functioning or PDD-NOSPervasive (or Persistent) Developmental Delay, not otherwise specified? Parents come to our practice all of the time with developmental problems that you just can’t put your finger on. It isn’t the ADHDAttention deficit - hyperactivity disorder of the olden days, or the speech delay, or just oppositional behavior. The broadest category is “non-typical” – not what you would expect. For now, anyway. More precise diagnoses among the various professional organizations and disciplines will only serve to hasten effective intervention(s).
There will be additional theories offered, and sometimes treatments may work. But others may make patients worse. And some children who could have improved – even on their own – may deteriorate because of the wrong line of thinking, whether intervention is conventional or alternative. At a juncture so critical as this, in the thick of the most important childhood epidemic of the 21st century, physicians need to lead and assist an increasingly learned public on how to proceed. If pediatricians do not investigate and practice new protocols, the families will proceed without them.
Parents and patients need guidance through such a complicated maze of opinions and treatments. A united front on autism will emerge as parents, educators, physicians, therapists, and other practitioners agree about their role in recovery of function. Doctors should be more knowledgeable and speak honestly with the families about how much we do not know, what doesn’t work, what could be harmful and what is just too expensive without acceptable statistics proving benefit.
All treatments need to be assessed with scientific scrutiny and with empathy. That doesn’t mean alternative and complementary treatments should wait. Sometimes, physicians have to prescribe pretty strong medications to very disruptive children in order for the family (and the unfortunate patient) to get relief. On the other hand, let’s not get too upset with parents who try a GF/CFGluten free and casein free dietGluten free and casein free diet diet when there exists the myriad of treatments such as those listed here.
Parents need to find honest practioners with lots of experience who can analyze and properly utilize all of the possible protocols and recommend a reasonable and safe course for each affected individual.
Tags: ADHD, advice, ASD, asd advice, ASD advise, ASD diet, ASD etiology, autism, autism advice, autism advise, autism cause, autism cure, autism etiology, autism puzzle, autism treatment, casein free, CF diet, Complementary and Alternative Medicine, Complementary and alternative treatments, DAN doctors, diagnosis, diet for autism, doctors curing autism, food allergy, GF diet, Gluten free, Hyperactivity, Pediatrician autism, pediatrician treating autism, vitamins and ASD, vitamins autism
Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Chelation, Patient experiences, Reversing autism, Special Therapies | No Comments »
Saturday, January 19th, 2013
We get lots of mail about the practice and the children that we help. I often tell parents not to believe most of what is posted on the web, ’cause, as they say, “If you’ve taken care of one kid with autism, you’ve taken care of one kid with autism.” Experience being our greatest teacher, here are some letters that document our practice’s development (stressing the word ‘practice’):
From Dr. Susan Widmayer, Administrator, Children’s Diagnostic & Treatment Center, Inc.
Early Steps – My First Autism Clinic (April, 2008):
Thanks, Brian. We are all very happy and excited. These children are among the most tragic we see and the parents are most definitely the most distressed. My hope is that we will be able to: 1. help the parents by giving them confidence that we are there for them and that we will be following their child with great care; 2. provide whatever intervention services that are most appropriate to each individual child; 3. establish a theoretical question and a sound research approach to gathering data so that the clinical care will help guide the future work; and 4. approach funders so that we can obtain support that will allow us to provide whatever evaluation and interventions are really useful in ameliorating the effects of the condition. Of course, if we could find a real pattern that gives us a clue to the origin of this condition, I will be very happy to carry your suitcase to Stockholm!!
November 2008 – First email from patient:
Thanks so much for seeing us yesterday. It was a pleasure meeting you and Karen. <<my child>> wants to know when we’re going back. I suppose I should have been upset with your news; however, I found myself kind of excited. It certainly makes sense and answers a lot of questions that we’ve had for the past 10 years. I really appreciate your frankness and directness in coming up with some possibilities. After talking with my husband and sister we think we’d like to give this a try. My sister is particularly interested as she has arthritis, another auto-immune disease… When we talked in your office you mentioned B12… So we’re saying it’s a go if after you have read the information I gave and still feel confident with your diagnosis. Let me know our next step. We’re just delighted that our path crossed yours.
November 2008 - from our Kind and Efficient Practice Administrator, Karen:
FYI the GSHGlutathione, a major body antioxidant composed of 3 amino acids smells like S.H.I.T.
January 2009
“…Reflux has gotten so much better since we put him back on bethenecol- screeching is gone and he is eating well. He was shaking his head after eating which seems to have subsided as reflux has stabilized. Very infrequent spit ups 1-2 a week, and small. We are working on more solid foods- cereal, smashed banana, mashed potato, avocado and he is doing better with slightly thicker. Am going to try ground sirloin burger tomorrow…”
April 2009:
I just wanted to “check in” with you. <<my child>> has 10 days left of the Valtrex presecription you wrote us…. so we’re 20 days into the antiviral treatment right now. He is doing absolutely amazing. He had a really high fever (over 101) and a bad diaper rash for about 3 days, followed by a cold (the rest of the house caught it as well, so it was not Valtrex related) but after that was over, he was a new kid. Literally…
July 2009:
I just wanted to let you know we are seeing progress in <<my child>> after only 3- Mb12 injections. All of his therapists have commented on how well he is doing as well. Thank you!
August 2009:
Well we just wanted to let know whats been going on. The boys started kindergarten its only been 2 days but they are doing fine so far. We are so proud of them… It is taken a little longer to come to see you because <<my child>> was seen by a pediatric dentist and needs some serious dental work. You were right about his teeth. Thanks for the heads up…
November 2009:
I wanted to take a moment to thank you for your time yesterday. Leaving your office was the first time we have taken <<our child>> anywhere (and trust me we have been a lot of places) where we have felt hope. We are very excited to see where this goes and are very grateful to have you in the journey of helping our son.
December 2009:
…Following up… since beginning diflucan..-the glutathione- multi vits- fish oil- and iflora….<<my child’s>> belly went down…it seems unswollen to us….he completely stopped banging his head on floor after 2 days on protocol….he stopped hitting us …( we think he was then hitting us to communicate his own pain, which he did not know how to put into words)…he stimsStimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement.Stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner...known in psychiatry as a "stereotypy", a continuous, purposeless movement. less….climbing has stopped…sleeping is great…. interaction has increased….so did his communications skills….he went from 2 words sentences to now 3-4-5 words sentences…he says please every time he ask something….he points at what he wants as well…(ex; ” this one mommy please”..while pointing)…we have witnessed multiple progresses….we are so amazed….and so happy…. Dr udell…we look forward to see again… .thank you so very much…. we are so pleased with <<my child’s>> progress already… WE ARE SO BLESSED TO HAVE FOUND YOU….
January 2010 – another one from our Kind and Efficient Practice Administrator:
This week one of Jake’s spelling words was ‘piece’. He had to write sentences at school for each word. His sentence was ” I want a piece of bread”…(the thoughts of a child on a GLUTEN-FREE diet).
February 2010:
Thank you Dr. Udell for putting the results in english for me. I have some questions about this fungus in her gut but I can wait until I see you on March…
March 2010:
We are sending you a picture of <<my child’s>> rash. As you can see, it’s not red any more, but today we noticed he has more little bumps on his forehead…
Another patient:
I know you mentioned increase in stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement., jumping, hand movements etc. Do you know how long the increased stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. will last? He has never had an excessive amount of spinning and have noticed spinning this past week. I went to pick him up at his preschool in the afternoon and he was spinning around in the gym. Should I be concerned?
April 2010 – one of many international patients we are lucky to assist:
I spoke with Great Plains International division regarding getting test sent to Argentina. Attached is an information sheet regarding the process. It is fortunate that the family is in Buenos Aires. From what they explained, there will be some difficulties in getting the kits/samples in and out of Argentina. The kits will need to be picked up at the airport. It can not be sent directly to the family…
May 2010:
I wanted to let you know that <<my child>> started his 3rd refill of diflucan and this week… and the first box of the probotics… still on glutathione… multivitamin… His therapists are reporting improvement in eye contact, communication and sensory tolerance!! His teacher still deals with his tantrums although much better in terms of duration and intensity but still random and over reactive… we went to Disney and he behaved exceptionally well despite the sensory over stimulation. that may just be what he needs…more stimulation overload then a human can provide:)
June 2010:
I was having a hard time getting <<my child>> to take the glutathione. I had been able to get it in his gfcf waffles or pancakes, etc., covering with syrup but he is now getting upset (yelling and biting himself) and stops eating and he’s not eating that much to begin with. It is a struggle everyday. Once he stops eating I can’t be sure if he even got it all in. I will buy another bottle and continue to try if you think that’s what I should do…
Another patient:
We believe that <<our child>> is still experiencing die-off symptoms. His behavior is more aggressive and irritable with tantrums. On a positive note, when he is in a good mood, he is repeating more, manding more, and demonstrating normal play…
You get the idea. Different patients, different problems, different solutions.
Thank you all for reading, and my great families who allow us to assist in their children’s recovery.
Brian D. Udell, MD FAAP
Medical Director
Child Development Center of America
©TheAutismDoctor.com
Tags: ADHD, advice, ASD, asd advice, ASD advise, ASD diet, ASD etiology, autism, autism advice, autism advise, autism cause, autism cure, autism etiology, autism puzzle, autism treatment, Complementary and Alternative Medicine, Complementary and alternative treatments, DAN doctors, doctors curing autism, medical doctor, Pediatrician autism, pediatrician treating autism
Posted in >ALL<, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Patient experiences | No Comments »
Saturday, January 5th, 2013
My practice continues to speak with families who remain confused about the most accurate diagnosis for their developmentally challenged offspring. Three professionals can provide 6 different-sounding diagnosis, depending on when they examined the patient, insurance and reimbursement requirements, what they have read on the web or experienced through the media, and well-meaning (sometimes ignorant-of-the-situation) friends, relatives and ‘experts’.
There are parents who say, “I don’t care about the exact diagnosis. Please, if someone could just make things better.” For a scientist who expects to provide the most precise remedy for the condition at hand, an accurate diagnosis is the most important first step in addressing the problem correctly. Otherwise, therapies may only represent poorly-placed, short-lived bandaids; hit-and-miss at best, under which infection may occassionally smolder and worsen. Here is a list of the alphabet soup of diagnoses that professionals offer to explain the patients’ various symptoms:
Autism, Autism Spectrum Disorder (ASDAutism spectrum disorder), “Spectrum”
Asperger’s, Asperger’s Syndrome (AS)
Pervasive Developmental Delay, Not Otherwise Specified (PDD-NOSPervasive (or Persistent) Developmental Delay, not otherwise specified)
Developmental Delay (DD)
Developmental Delay plus ADHDAttention deficit - hyperactivity disorder, Oppositional Defiance Disorder (ODD), HypotoniaLow muscle tone, etc.
Mental Retardation (MR – yes, parents still hear that)
Cerebral EncephalopathyAny of various diseases of the brain (Medical dictionary) (yes, neurologists still say that)
There’s nothing wrong with your child
A previous blog, Another Model of Autism, was the result of a great deal of thought about how to paint a picture of what I perceive, as a physician, on a daily basis. My illustration was offered to represent why symptoms such as low tone or G-IGastro-intestinal (stomach, small intestine; large bowel) problems could precede the actual diagnosis, while ‘stimsStimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement.Stimminga repetitive body movement that self-stimulates one or more senses in a regulated manner... known in psychiatry as a "stereotypy", a continuous, purposeless movement. is a repetitive body movement that self-stimulates one or more senses in a regulated manner...known in psychiatry as a "stereotypy", a continuous, purposeless movement.’ and sleep problems might occur as the child got older. However, as I was explaining my elaborate model to parents, I could see the puzzlement on their faces. The problem is that the term “Autism” is based on the 70 year-old observations of the father of modern child psychiatry, who believed that poor parenting was the cause, at a time when the incidence was less than 1 per 10,000, patients presented with much more severe symptoms, and at a an older age.
The puzzle pieces don’t fit together because we are talking about, and looking at, different pictures!
It is no wonder, then, that parents are so confused, since the professionals are likewise not in agreement about what constitutes the diagnosis. For example, there are many children who DO exhibit eye contact or some socialization and others who DON’T have severe tantrums or obvious repetitive movements. Is that ‘autism’ or is that PDD-NOSPervasive (or Persistent) Developmental Delay, not otherwise specified? It depends on the professional, their training, experience, and understanding of the problem. Furthermore, there exists the belief that people cannot recover from autism, so, if the patient improves, it wasn’t autism. Or, thinking that that the condition ‘turns into’ Asperger’s Syndrome, because the patient can talk and appears to be ‘high-functioning’. There is really no term to define the situation in patients who have improved from the condition because of ABAApplied behavior analysis... the science of controlling and predicting human behavior or biomedical...a focus on medical and dietary interventions intervention, yet still have some ‘leftover’ behavioral challenges.
Because of such a plethora of definitions, the DSMDiagnostic and Statistical Manual of Mental Disorders 5 will include all similar symptomatology under the ‘Spectrum’ banner. Perhaps the revised nomenclature may make the terminology more streamlined, but I am not sure that it will help parents and professionals understand 1) why development is not proceeding normally, 2) how to choose the best intervention(s), and 3) what the prognosis will be? In my practice, I observe many different types and presentations of autism, Asperger’s, PDD-NOSPervasive (or Persistent) Developmental Delay, not otherwise specified and variations of normal development. It would be preferable if science could detail each type of developmental delay, because treatments could be evaluated and targeted with more precision, and therefore more likely to be successful.
As in other epidemics (Legionnaire’s disease, HIV, ‘Swine’ flu, breast cancer), patients are left in the dark while science determines cause(s) and effective treatments. The present condition that we call ‘Autism’ is so extensive, poorly-defined and enigmatic that it leaves families extremely frustrated as they seek help for their affected children. In the meantime, we are left to call it something as etiologyThe study of causation or origination, prevention and precise treatment await further discoveries. It’s not fair.
Tags: ADHD, advice, ASD, asd advice, ASD advise, ASD etiology, Attention deficit, autism, autism advice, autism advise, autism cause, autism cure, autism etiology, autism puzzle, autism treatment, Complementary and Alternative Medicine, Complementary and alternative treatments, doctors curing autism, Hyperactivity, medical doctor, oppositional behavior, Pediatrician autism, pediatrician treating autism
Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Earliest Red Flags, Patient experiences | No Comments »
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