Posts Tagged ‘Hyperactivity’

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Food for Thought about Autism

Friday, May 17th, 2013

The goal of biomedical treatment is to optimize health in order to minimize inflammation, prevent disruptive behaviors, enable normal development, and allow the traditional therapies to take hold. This is the story of one of our parents who became a believer after getting rid of the offending nutritional fare.

After our son was diagnosed with autism spectrum disorder, I spent about two weeks in a very dark place. As soon as I stopped feeling sorry for myself, I knew I needed to try to be as strong as I could so that I could help our son. About six weeks after our first visit with Dr. Udell, we received all of the test results for food sensitivities. My son had been a great eater (this is a story for another time) until we found out he was highly allergic to peanuts; then, after experiencing anaphylaxis at 17 months due to eggs, food became a MUCH bigger problem. He had pneumonia for the first time in February 2012, which was frightening. We were told that he suffered from Reactive Airways Disease and that he would be sick for quite a few years. I had such a difficult time just accepting this news, so I researched solutions. He was on a regimen of Singular, Xoponex, and Pulmicort in the nebulizer and, if it got severe enough, oral steroids. Our son was always ill. Sick so much that people did not believe us. This year, my son was on steroids (either oral or inhaled) from October until March, but he was still not better. One of the fill-in pediatricians proclaimed, “He is on too much medicine to be this sick!”

This past March, after our follow-up appointment for biomedical treatment, we started our son on a high dose probiotic and Diflucan. At that visit, we received a long list of items for our son not to eat. My husband and I decided to dive head first into this and get rid of his beloved bananas and Lorna Doones (cookies). I was skeptical about the food changes because any time you hear the word autism, GF /CF diets are soon to follow. I am not sure if the food, the probiotic or the Diflucan changed our son but something did and he has not had any more respiratory issues. I am not a Dr. but as we noticed our son changing with all of the new protocols, he became a healthy 3 and a half year old little boy. No steroids for 7 weeks and counting.

Back to my son’s food issues. He never got back to eating fish and chicken, as he did in his infancy. He eats a lot of pouches from Earth’s Best or Plum Organics. He drinks a smoothie in the morning but, since we had to change to rice milk, we provide Silk protein drink and soy yogurt. I went to my local health food stores (the big box ones are so expensive) and found Annie’s Gluten Free Bunnies, Crunch-master cinnamon sugar crackers, Enjoy Life sugar cookies and Home Free little sugar cookies. We had to bribe him with toys to get him to try new foods, but it worked. Now, we have a few items to take when we go out, so he can feel like a normal kid.

Quick tips for giant food changes. Talk to your local health food stores and see if they can order selected products for in-store purchase. Often, they will offer a discount if you order a case or more. Check out Amazonmom.com (it’s free) where you could get discounts on baby and kids items, make sure to sign up for their ‘subscriptions and save’ programs. The pouches from Plum Organics are $1.79 at Babies R Us and they are shipped to me for $12.46 per dozen, a savings of $9.02. The Enjoy Life cookies list for $4.69 a box, but through Amazon they are $2.84. Not everything is cheaper at Amazon, but with the expense of a GF/CF/egg/nut etc. diet, every little bit helps.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Autism Therapies, Diets, Earliest Red Flags, Patient experiences, Special Guests, Speech and Language | No Comments »

Autism Insurance

Tuesday, February 26th, 2013

Don’t you just love it? An ADHD 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 ADHD. You can imagine, therefore, the complex decisions that are involved in patients with ASD. 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 ABA, 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 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 ASD 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.

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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 »

United for Autism?

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 OT 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 chelation. 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, DMG, TMG, 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 stims should be ignored. The Son-rise program advises joining the child’s unusual repetitive behaviors. There are numerous supplements to address symptoms; including taurine, GABA, CoQ10, carnitine, carnosine, vitamins and minerals. Speak™ for speech. True Focus for focus. There are protocols for immune system support, G-I system support, and brain support. Want more? Treatments have been advocated using fecal transplants and even parasitic worms.

Then, there are the diets. GF/CF, 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 vey.

Studies have shown that ASD 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 ASD 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, ASD, Severe, High Functioning or PDD-NOS? 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 ADHD 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/CF 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.

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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 »

The Autism Diagnosis II

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 (ASD), “Spectrum”
Asperger’s, Asperger’s Syndrome (AS)
Pervasive Developmental Delay, Not Otherwise Specified (PDD-NOS)
Developmental Delay (DD)
Developmental Delay plus ADHD, Oppositional Defiance Disorder (ODD), Hypotonia, etc.
Mental Retardation (MR – yes, parents still hear that)
Cerebral Encephalopathy (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-I problems could precede the actual diagnosis, while ‘stims’ 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-NOS? 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 ABA or biomedical intervention, yet still have some ‘leftover’ behavioral challenges.

Because of such a plethora of definitions, the DSM 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-NOS 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 etiology, prevention and precise treatment await further discoveries. It’s not fair.

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Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Earliest Red Flags, Patient experiences | No Comments »

What is Stimming in Autism?

Monday, October 29th, 2012

DSM-IV version

DSM V

Some medical professionals who read this blog might even scoff at the question. “Stimming? That’s something that you guys made up, like some of the other stuff you say about autism.” It’s as if sensory processing disorders aren’t real, ’cause the AAP decreed it so.

Regarding the term ‘stimming’, critics might have a point. Even wikipedia only provides a brief explanation. Let’s take a look at what it is, how it might be addressed, and what the prognosis is for this sometimes-annoying sign that so often identifies abnormalities in the movement domain (the others being social and speech). For many parents, such behaviors represent a sign that their child looks different when playing in the park, or that they may be bullied as they get older. It is a key symptom for inclusion in the proposed 2015 criteria change (pictured).

1. Stims are not one thing, they indicate various activities. For this reason, the psychiatric equivalent, “stereotypy,” which indicates purposeless movements, would be imprecise and incorrect. Furthermore, they do not only represent ‘self-stimulatory’ behaviors responding to sensory input; ‘stimming’ is expressive in nature, as well.

Many parents can become quite versed in Stim-lish. “Oh he loves that video,” or “She flaps that way whenever she is nervous.”

2. Some are purely verbal. Ever hear that high-pitched, repetitive cry? That’s a verbal cue to get some kind of attention. It works really well. Screeches are also very effective at attaining an adult’s attention, if not affection.

3. Given a narrow range of expressive verbal behavior, more generalized body movements are often the only way to display fear, anger, frustration, sadness, joy and excitement.

4. Repetitive behaviors are not obsessive-compulsive disorders. They are repetitive behaviors, until proven otherwise. Therefore, most anti-OCD drugs don’t work, or can even exacerbate symptoms.

5. Several ‘stims’ that have the common factor of responding positively to restoring G-I health. Those include: severe, prolonged tantrums, self-abuse behaviors, aggressive behaviors, constant activity, and repetitive bending at the waist or pushing into objects.

6. Sometimes, they represent the affected child’s bodies’ appropriate response to really loud frequencies or incredibly bright lights that their altered sensory systems percieve. That assault on their senses may frequently become an issue as children recover and are even more keenly aware of the environment. Sudden onset of unusual behavior may indicate that the individual is experiencing a very annoying or new perception. Such a change in behavior is not always a negative that requires strong medication, or that medication would effectively treat, anyway.

7. Also, a child exhibits repetitive behaviors as a result of boredom. I spoke to one Mom who re-directs her child to empty the clothes dryer. She said, “It may take 45 minutes, but he’s not stimming while he’s doing that.”

8. Stims evolve. Some morph into other oft-repeated behaviors, and many just disappear over time. For the most part, the majority of my older patients have become rid of these activities. As children get older, they may be mistaken for tics, and treated in that manner, which is usually not effective, and may even be counter-productive.

9. As increasing numbers of neural pathways for speech become enabled, children often exhibit echolalia and scripting. These are forms of verbal stimming in a patient who is becoming more proficient. Such speech patterns are sometimes practice, so  they wouldn’t always be an activity that needs to be corrected. The child’s level of cognition can be much more accurately assessed by the quality (not the quantity) of repetitive speech. Over the years, parents have repeated words and phrases so frequently that children are often merely imitating the constant reiteration that parents expressed as they have sought to get through to their affected offspring.

10. Some recent literature may indicate that seizures, or seizure equivalents, may be represented clinically by repetitive behaviors. This may be especially true if the child seems to ‘flake out’ at repeated intervals, or displays alterations in gross motor movements such as jerking or clenching.

What stimming actions have in common is that they provide communication and are not always a negative that can or should be fixed. ‘Self-stimulatory’ activities are signs and symptoms that require examination and evaluation, not just behaviors that should be brushed off as part of the autistic condition.

Finally, in my experience, the ability to re-direct (rather than admonish or punish) such unusual behaviors serves as a measure of medical involvement, an insight into the cause, and a therapeutic intervention.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Earliest Red Flags, Patient experiences | No Comments »

MAPS 2012 Autism Conference

Tuesday, October 2nd, 2012

It is exciting to report that this past weekend I attended the First-Annual-Second-Level training sessions for the newly forming Medical Academy of Pediatric Special Needs, in Orlando. I won’t describe each presentation, as I have done in previous posts, other than to report the highlights.

For more than eight hours per day, for three days, we were immersed in everything from basic science, to research, to charting, to legal issues, to diagnosis, workup and treatment. The participants are a part of a truly elite group of medical professionals who are willing to work together to help parents find the correct medical care for their special needs child.

As I listened to some of the lectures this time, I was familiar enough with the information to think about how the material applied to children in my medical practice; specifically, who might respond better to some particular medications or supplements. Then, I would consider other patients who might benefit from particular blood and/or urine testing. Occasionally, I was alerted to possible negative reactions that I hadn’t heard about or procedures that I wanted to experience. After several years of attending similar seminars, I could pick out the other doctors who had similar philosophies, and we traded clinical information.

The most talked about topics were:

1. Memantine. This is a drug used to help people with Alzheimer’s disease to think and perform daily activities more easily. There was a fair amount of clinical experience among the participants, so trying this medication in selected patients seems to be worth a try. Additionally, there is apparently a more rigorous soon-to-be-published study that will give valuable information about its use.

2. Oxytocin. It’s getting more buzz, and it appears to be safe. It’s efficacy in this condition remains to be seen, however.  I heard various opinions on whether its use resulted in any real improvement, especially in eye contact and socialization.

3. The most common topics throughout the conference were inflammation, gut health, how the central nervous system is affected in ASD,  mitochondrial dysfunction, diet and the environment.

Networking with the other members is always a key factor to our enjoyment at such seminars. Lecturers included such autism luminaries as Drs. Dan Rossignol, Martha Herbert and Arthur Krigsman. It was great to meet Sandy Haines, our executive director, who used to work for Microsoft (and you could tell by the way she has organized and tidied up this nascent organization).

Earlier, I overheard a prospective society member inquire about the rigors of joining MAPS, including whether there might be formal testing in the future. I later told Sandy that she didn’t need to waffle about her response. “The answer should be ‘hell yes,’” I said. I’m proud to have taken the time to master the basic sciences and learn from from the experience of really smart medical professionals. We should be taking this opportunity a couple of times per year to discuss these enormous problems and all possible medical solutions. I’m proud to take a test to prove my knowledge.

It helps separate me from the Internet.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Conferences, Diets, Reversing autism | No Comments »

Autism and Child Safety

Thursday, September 13th, 2012

This story does not have a happy ending. It is about one of my young patients who drowned recently. The tragedy coincided with the National Autism Association’s announcement that there were a bunch of Big Red Box safety kits available for families in need. Originally, I thought I would instruct other families about the dangers of elopement and water safety.

My patient’s mother is no ordinary Mom, who simply wasn’t aware of the dangers of swimming pools, or the danger to children, or the dangers of autistic children around swimming pools. This is a trained individual whose previous work included heading an agency that oversees children’s health and welfare issues. It was her responsibility to make sure that there was enough information, by way of seminars and media, to teach the public and protect the children.

Additionally, the Mom told me a story about having already witnessed another near-drowning episode. Not only was this mother aware of safety, she was cognizant of the ‘innocent manner’ in which suffocation can happen. Mom had been present when another child just disappeared while people were in the pool area. I have observed this phenomenon myself – that infants and toddlers just slip into the pool, with very little struggle, and sink to the bottom, regardless of their ability to swim. So, that event prompted installation of  her pool fence.

There were also locks (automatic ones). Swimming lessons – check. The child had plenty of supervision. Mom had considered alarms, but they wouldn’t have been practical in her backyard  - which was set up to insure her children’s safety. Furthermore, the child was discovered after being submerged for just one minute! But, it was too late, because the toddler had taken such a deep inhalation that the lungs were already too damaged, and the youngster did not survive.

Discussing pool safety with these parents yielded no extra knowledge or insights for me to report. “Everything about that day was just a little off,” the mother explained. There was nothing that Mom could put her finger on; it was just that events did not go smoothly throughout that day, culminating in this horrible catastrophe. The question that I had to ask was, “What can we learn from this tragedy?”

I am not saying that parents don’t need to utilize all of the preventative measures that may mitigate the chance of such an occurrence. In fact, the procedures that this family had already put in place provided comfort. Knowing that they had, indeed, done everything possible have enabled this brave mom and dad to move on with the job of raising the other children.

What I have learned from this tragedy and by interviewing the family is this: It is NOT the autism, or the drowning, or the age of the child that leads to our sorrow, it is how cruel life can be. Accidents happen. If, like these parents, we really accept that all precautions have been taken, that knowledge will allow us to persevere and take care of those left behind.

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Posted in >ALL<, Asperger's Syndrome, Patient experiences | No Comments »

Autism, Apraxia and the Oboe

Thursday, August 23rd, 2012

I can’t play the oboe. I probably never will. But, if I wanted to, it would probably take, like, 6 months just to be able to produce a single note. Then, maybe after 1 year – if I practiced every day – I might be able to play Three Blind Mice. Poorly.

My brain did not come preprogrammed with instructions about the correct embouchure to play a double-reed instrument (or any wind instrument, for that matter). So, I would have to practice that movement of my lips. My lungs were never used to delivering short blasts to fine-tune output. I would have to practice that, also. Then, I would have to figure out some way to combine a number of physical feats at the same time in order to deliver that first squeak.

It wouldn’t matter how many times my teacher told me to play a song. It wouldn’t matter if she raised her voice and implored me to do a better job. Perhaps a different teacher would get me more motivated? I might get frustrated with my lack of ability and stop trying for a while. I could start making horrible sounds just to make something come out, and then the teacher would say that I’m not trying or I’m doing it wrong. Instructors would become very disappointed if I started to tap on surfaces with the oboe – just to make any sound come out.

That is exactly how it must feel for children with ASD who cannot speak. When a neuro-typical infant starts to babble and imitate words, it is because they already have human speech hard-wired into their cerebral cortex. Toddlers don’t think about, or really even practice speaking. It just comes.

Think how much more work it takes for a young child to let the caretaker know that they want juice, if they cannot speak. Infants simply cry and the parent offers a variety of choices until they hit on the correct one. Later, certain cries indicate a desire for food, not a toy. Without speech, a child pulls the adult to the refrigerator or opens it himself in order to communicate his wishes. We are all lazy. It would be much easier to do it the way the typically-developing sibling does… “JUICE” or “Juice, please” or “Mommy, I want juice!” The parent who says “I know he can speak ’cause he does it when he wants to,” is missing the point. That is what makes the child normal – we all do what we can when we want to, to the extent that our abilities allow. The ASD child speaks when he absolutely must, and then only when every circuit is working correctly.

Likewise, for an autistic child to speak more, pathways need to be laid down so that the activity can take place as part of a much more complex social environment and therefore more often and (hopefully) appropriately. Then, the electricity has to flow so that the circuit is completed and results in the correct sequence of events. It takes practice, desire, and an ideal set of circumstances. Many times, parents report that their child said some complex combination of words and ask, “Where did he/she learn that?” Well, they are apraxic, not deaf.

By getting the child in the best physical condition, the routes can be laid down. By supplying enough cellular energy, the circuits fire. By supplying S&L, OT and ABA, the child gets to practice. Parent’s love and encouragement supplies the desire to try. That takes a great deal of work by all parties involved.

I will never play the oboe, but, thankfully, the majority of ASD patients eventually speak (in practice, the number is even higher because of the younger age of diagnosis and appropriate interventions). Of course, that is just one part of their complex story. The goal is not to play solo, but to be part of a symphony.

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Posted in Alternative and Complementary Medicine for ASD, Earliest Red Flags, Reversing autism, Speech and Language | 6 Comments »

School Started – How to Help Your Children with Autism and ADHD

Monday, August 20th, 2012

One of our busiest times of the year is October, actually. Four-to-six weeks into the school year, many issues arise which require some sort of attention, or else it feels as if everything is going to fall apart. Focus. Anxiety. Fear. Teachers. Schoolmates. Non-preferred activities. Recess (though, that is usually everybody’s favorite) can be problematic, since that is often pull-out or tutoring time, or bullying can occur. Even lunch can be an issue for the children on special diets.

Sleep, exercise and food – paying attention to these simple activities can make a huge difference in the new semester.

The first activity that often needs to be addressed is sleep. Throughout the summer, the children have gone to bed later and later, and now that schedule needs to be re-aligned. This is no small matter. Who wants to learn a non-preferred subject when they can’t concentrate? For students with a short fuse, lack of REM sleep adds fuel to the explosive power of a meltdown. For those with social issues, the inability to get along is furthered by poor circadian rhythm. There is no area of your child’s development which cannot be improved with a good night’s sleep.

For some patients who are on stimulant medication, parents and professionals might consider changing the timing of the medication so that the child can fall asleep at the desired time. Some children will just unravel by the time school is over and so evenings and homework are a unpleasant chore. Instead of increasing the dose or adding a second medication, it could be prudent to split dosages when possible and determine the best time to get the best results. For patients taking guanfacine or other blood pressure meds, giving the primary dose just after school or at bedtime could be helpful since the sleepiness could be worn off by the morning, but the anti-anxiety effects continue into the school day.

In any case, I have found that melatonin is a wonderful supplement that can get things going in the right direction. Although there is great concern about the hormone (especially on the web), it is safe and effective. Compared to all of the other ‘real’ medications that may have to take, there are rarely any side effects. Vivid dreams may be an indication that the child has not been getting enough REM sleep, so don’t give up if that symptom ensues. One of the most important elements in this strategy is the development of a ‘normal’ daily rhythm by administering the supplement ~ 30 minutes prior to the desired sleep time, every night, including weekends.

Optimizing nutrition for children with developmental challenges is another important factor for a smoother Fall. I write lots of letters asking the school’s assistance by paying attention to students who require special diets. Junk and pre-processed food have been reported to affect neuro-typical children’s school performance and many parents have observed negative effects in their own children. Although it is controversial, many parents report learning and hyperactive problems when their children consume both natural and artificial sweeteners. In my experience with ADHD behaviors, it is the artificial coloring, flavoring and preservatives which can cause even more learning problems.

Proper exercise is the final key element that will help insure a better transition to the school year. The children have so many challenges during the day, then therapies and after-school (usually indoor) activities. Remember when we used to play outside until your mother called you to dinner? Even bouncing on a trampoline for a while can help get the jitters out. Physical activity helps focus during homework, getting sleepy at bedtime and feeling hungry at dinnertime. “There is simply not enough time for exercise,” is not an option. At least find the time to take the children out on weekends.

Appropriate  sleep, food and exercise. It’s not rocket science, but it is an effective strategy that can help your child achieve more success. It’s old advice, but, hey, I’m an old doc.

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Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Diets, Holidays & Vacations, Sleep | No Comments »

ADHD and Autism

Sunday, July 8th, 2012

There are a plethora of physical problems that may accompany being an ASD patient. Sometimes referred to as ‘co-morbidities’, meaning “one or more disorders in addition to a primary one”, I prefer to think of the additional diagnoses as part of the autism spectrum itself. G-I problems, eczema, allergy, hyperactivity, apraxia, sensory disorders and behavioral conditions may each present as a single, separate pediatric medical condition. However, when such problems arise in ASD, I do not believe that they are separate at all. To effectively help ASD patients, diagnosis and treatment MUST include the whole picture. Or else, as many parents have experienced, their children go from one specialist to another, sometimes addressing the single problem, sometimes not even that. But NEVER – in my experience – addressing the autism itself.

ADHD encompasses a unique medical history and pathophysiology that is still the subject of much debate. Lectures and books offer various and sundry opinions, depending on the author’s background and point of view. Originally coined ‘hyperactivity’, the diagnosis has been expanded to include ‘impulsivity’ and ‘inattentiveness’ outside the range of normal for the child’s age.

In a similar manner, when the parent of an ASD patient describes their child’s (often disruptive) symptoms, depending on the practitioner, various theories and treatments are offered. Pediatricians tend to offer stimulant medications such as Ritalin or Adderall, neurologists may wish to focus on behavioral therapies, and psychiatrists sometimes suggest Abilify or Risperdal. There are several problems with such a variety of approaches.

Many times, I treat very young children who have been prescribed 2 or more stimulant and/or psychotropic medications. Often, I find that parents see only incremental or no improvement from complicated pharmacologic protocols. Worse, I encounter youngsters who suffer from many of the various medications’ side effects; such as tics, over- or under-eating, violent outbursts and sleep disturbances. Furthermore, what studies are available to assure parents that such medications are safe, especially long-term, and especially when they are prescribed in combination? “There are no studies to show…” is an oft-used phrase espoused by the conventional medical community to downplay the assistance offered by alternative and complementary practitioners. That doesn’t seem to apply when a doctor orders focalin, lithium and Prozac for a disorderly child. When a four, five, or six year-old child receives potent medications – what medications will be required by the age of nine, or twelve, or fifteen years and older?

Another approach is to insist that ABA is the only proven – and therefore necessary – therapy for the negative behaviors that are encountered in ASD patients. Such advice poses great difficulties for families who either 1) do not have private insurance or 2) their carrier does not cover this intervention. Sure, OT, PT, and/or S&L treatments have value, but they were never intended to address all of the behavioral problems that often accompany the ASD diagnosis.

Rather than merely declaring that the ADHD is “just another symptom of the autism”, patients who are ‘on the spectrum’ deserve an appropriate medical workup. Those suffering from impulsivity really need to have their gastrointestinal health evaluated. When kids “act like they have ants in their pants,” sometimes they actually have ants in their pants (that is, fungus, harmful bacteria, or parasites). When parents are concerned about constant activity, the medical workup needs to include thyroid and other metabolic studies (such as calcium, magnesium and vitamin D levels), in order to rule out treatable conditions. If the major problem is lack of focus, the professional should rule out sleep disturbances, dyslexia, problems with eyesight or an inappropriate educational setting.

Taking a detailed history and performing a thorough physical examination often provides clues as to why a child exhibits unusual behaviors. Then, even if ALL of the ADHD symptoms do not resolve with targeted interventions, there is enough abatement of extreme behaviors that, hopefully, less or even no medications are warranted in very young children. The traditional therapies that children receive also seem to work better when underlying medical problems are discovered and addressed.

Additionally, young children deserve to be evaluated by other professionals who might offer hearing therapy, RDI, neurofeedback, hippo therapy, and other valuable alternatives, which can be quite helpful. Over-the-counter remedies such as pycnogenol, tryptophan, magnesium or phosphatidylcholine can be useful by decreasing the anxiety that may exacerbate behaviors.

By taking such a holistic approach to the ASD patient with ADHD symptoms, the use of medication may be delayed, decreased, and even eliminated from the complicated course that families with autism must navigate.

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Brian D. Udell MD
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