Archive for the ‘Asperger’s Syndrome’ Category

Vitamin D for Autism and ADHD

Sunday, April 6th, 2014

One of the more common out-of-range laboratory findings in the children who come to our clinic is a low vitamin D level. Learning about the myriad effects of this important nutrient ought to encourage parents to ask their pediatric specialist to check the blood concentration when evaluating patients with ASD or ADHD.

Effects:

  1. Vitamin D enhances the intestinal absorption of:
    1. Calcium
    2. Iron
    3. Magnesium
    4. Phosphate
    5. Zinc
  2. It is involved with the immune system:
    1. Normal functioning
    2. Inflammatory response
  3. There are effects on neuromuscular functioning.
  4. Bone mineralization is influenced.
  5. The vitamin is involved with modulating genes that regulate cell growth, proliferation, differentiation and death.

Metabolism:
The sequential manner in which this hormone-like vitamin gets into the body, and becomes active, helps explain possible reasons for insufficiency, and observed effects.


 

Dietary Sources:
According to an interview on WebMD, “Surprisingly few foods contain vitamin D…” Dr. DeNoon lists “Super foods,” such as (wild caught) salmon, mackerel, shellfish and mushrooms. Mostly, though, humans were built to get our vitamin D through the skin, so foods are now fortified to make up the difference.
Based on bone health, and given acceptable calcium levels, dosages of 600 IU/d for non-seniors “meet the requirements of at least 97.5% of the population…” BTW, the RDA for vitamin D was derived based on conditions of minimal sun exposure.
There is apparently conflict among the experts, however, about the definition of standard levels. Recommended intakes for infants and children vary from 400IU to 1000IU per day, with unanswered questions about increases.

You can take too much:
This is a fat soluble product, meaning that it can accumulate and become toxic. That is why a doctor should evaluate and follow levels, especially in high-risk children.

Evaluation:
The laboratory evaluation is usually done by testing for blood levels of 25-hydroxy Vitamin D, which is NOT the active form. A calcitriol (1,25 di-hydroxy Vitamin D) level must be ordered separately. The results, and variation from the standards vary, depending on the laboratory. Calcium, zinc, iron and magnesium may be checked, as well.

Autism and ADHD
ASD patients do not represent a ‘normal’ population. RDAs are, in my opinion, the amount below which some neuro-typical people can get symptoms. It seems to me, “Low normal,” is “low.”
There are numerous reports of children spending less and less time outdoors in physical activity,
especially those ‘on the Spectrum’.
Many kids are picky eaters or have been placed on restricted diets
that might affect absorption and levels.

The dermatologists have warned about the dangers of ultraviolet exposure, so SPF 188 was invented and applied copiously.
Often, children have eczema and other skin conditions that
might interfere with normal metabolism.

The conversion of chemicals to the active form assumes a healthy circulation, liver and kidneys. Many of the patients do not appear in optimal health.
There are genetic disorders of calcium metabolism
that present with autism.
There is even evidence that maternal levels may play a role in ASD.

Mostly, however, I am not sure why
so many patients exhibit decreased vitamin D levels.

Treatment:
Children with values that are at, or below the low range of ‘normal’ (depending on the lab), are usually given”D3,” 1,000 – 2,000 IU extra per day.

Treated patients are re-evaluated by periodic testing, plus documentation of daily supplemental intake.
Positive effects, such as a healthier immune system, are usually noticed within a month or two of getting the correct dose. Sometimes, sleep improves (try giving at night). The other therapies appear to work more efficiently; there appears to be better cognition, focus, and eye contact as vitamin D levels are normalized.

Conclusions:
It is difficult to sift through, and pinpoint, the specific biomedical intervention that leads to healthier and happier children. “Documentation,” as they say, “is lacking.” It certainly feels as if adding vitamin D3, when it is low or deficient, helps practitioners achieve improvements in signs and symptoms of ASD.

Oral supplementation is inexpensive, usually well-tolerated by the child, can be followed by documenting the course of treatment and laboratory confirmation.

Autism Conference 2014

Sunday, March 30th, 2014

This conference represents a major opportunity for serious professionals who want to learn about state-of-the-art autism diagnosis and treatment. Other pediatric specialists should take note that the Medical Academy of Pediatric Special Needs is a formal, scientific forum for doctors who wish to care for complicated cases.

Day 1 – ADHD Sessions
Dr. Elizabeth Mumper (Rimland Center) reviewed neurotransmitters. Her focus then shifted to the pressure that Big Pharma has (openly and clandestinely) foisted upon parents, patients, and doctors to diagnose ADHD and prescribe medication. Plus, there is a lack of research demonstrating long-term improvement from these pharmaceutical products.
The disorder is better characterized as a network-communication problem, rather than focusing on one or two specific areas of the brain.
Dr. M then reviewed treatable, metabolic causes of behaviors that may be diagnosed as ADHD. Therefore, the signs and symptoms deserve an appropriate workup; not merely a knee-jerk Rx for stimulant medication.

Dr. Dan Rossignol summarized the most recent and pertinent literature about laboratory assessment for ADHD. A reasonable medical workup was presented, so that treatable conditions can be identified.

Dr. Nancy O’Hara followed with her interesting proposals about non-drug interventions, including dietary changes and addressing environmental issues.

Dr. Stuart Freedenfeld spoke about the forces that drive the diagnosis, many of them non-medical and more related to socio-economic status, especially as regards pharmaceutical intervention.

Case presentations and discussions filled out the rest of this first day.

Day 2 – Environmental Medicine Sessions
Dr. O’Hara reviewed detoxification physiology and the factors that might affect normal functioning, including genetic variation and the myriad of toxins in the air, food and water. Poisons have detrimental effects on mitochondrial operation, the CNS, and can lead to thyroid disruption, altering normal physiology. Various helpful interventions were offered.

Dr. David Quig reviewed laboratory assessment of metal exposures and the concept of body burden. Single toxins can be detrimental, but there are many environmental poisons that multiply negative effects, called the Multiple Hit Phenomenon. He discussed the issue of net retention of toxins, and various therapeutic modalities.

Dr. Stephen Genuis expressed his opinion that airborne pollution represents the most important source of toxic load, resulting in chronic illness for the mother, child, and future generations. He also introduced the topic of ‘nano toxicity’, new pollutants of very small molecular size, in bedding, for example. Evidence for direct and indirect effects of the ever-increasing burden of toxins on multiple body systems was reported.

Dr. David Dornfeld added to our knowledge about total body burden of multiple toxins. He also discussed various forms of detoxification, including chelation – the active removal of heavy metals with chemical compounds.

Case presentations and discussions followed.

Day 3 – Plenary Session
Dr. William Parker spoke about “Post-industrial factors underlying immune system destabilization and subsequent inflammatory diseases point toward dramatic changes for medical practice in the near future.” His discussion was about the manner in which modern society has disturbed our microbiology and the effects that has had on the immune system and created a whole host of auto-immune conditions.

Dr. Paul Schreckenberger gave a fascinating talk revealing that, contrary to common scientific belief, urine is NOT sterile. The take home point was thathere is whole host of new thoughts about the human microbiome (our micro-organisms and their genetic components). There is a need to identify new species and get a better understanding of good and bad bacteria.

Dr. Michael Cabana presented the evidence about the use of probiotics and the effects of ameliorating auto-immune conditions, especially asthma. Important variables are when the supplement is delivered and the requirement for high potency products.

Dr. Rossignol presented the evidence for HBOT to address gastrointestinal inflammation.

Dr. Bob Sears gave a lecture about thyroid disorders and the ‘workup’ to assess thyroid function.

Finally, Dr. Rossignol presented evidence about the newest therapies for autism.

Conclusions:
Coincidentally, this conference commenced even as the CDC announcement that 1/68 children are now affected with ASD. Each year, it seems, the numbers can’t possibly go any higher, but they continue to rise.

The professionals who attend this conference are serious about getting a better understanding about this epidemic and trying to help, and I am proud to be part of that group.

Two Hundred Child Development Stories

Sunday, March 16th, 2014

This is my 200th official blog. Yay.

There were several reasons that I started writing back in 2011, and why I continue to produce these stories.

  1. To aid the constant Internet search that families go through in order to assist their developmentally-affected children. The reader’s ability to scrutinize the authority and basic science of medical information is proportional to the knowledge gained by “seeing it on the web.” Surfing is not research. I hope to provide a venue where readers can trust that the material is well researched and presented in a palatable form. Hyperlinks to the original articles are provided whenever possible. “Don’t argue with me,” I tell my skeptical colleagues. “Discuss it with the professors who wrote the paper!”
  2. My competition is the Internet. “My esteemed neurologist colleague,” who hasn’t changed his views on autism in the past 20 years, is still a respected professional. So, I write to enlighten and, hopefully, entertain, while making sure that TheAutismDoctor.com is accurate and up-to-date. If you can’t beat ‘em, join ‘em.
  3. Producing this blog is homework. Days, and sometimes even weeks, are spent thinking about, researching, writing and editing each story. I am encouraged to organize my thoughts and to learn about new subjects. To teach is to learn.
  4. I can refer to these discussions for patient questions and clarification. These stories can provide a valuable aid to understanding some very complicated subjects. Plus, I invite readers to ask their pediatrician and other medical specialists to examine this information.
  5. The Child Development Center is a single practitioner private practice. With a small, but interesting and interested support staff, we are busy taking care of the patients, not studying them. This is an effective setting to tell our stories.
  6. Through this website, families from all over learn about this enigmatic epidemic and explore effective treatment options. TheAutismDoctor.com reaches a worldwide audience. More than 150,000 visits have been recorded, there are now nearly 10,000 views per month, and the site remains high in Google searches. Importantly, I have the honor of caring for patients from around the globe.

Personal Facts
My favorite posting is “Joe the Plumber“, one of my first literary attempts in this digital venue. It was an attempt to convince parents that there were doctors willing to assist in the recovery of their affected children.

The most difficult work was the HBOT series. Such a complicated topic cannot be understood by advertising, testimonials or word of mouth.

My most emotional stories are on Mothers and Fathers Day. One Dad told me that he keeps a copy of the 2011 posting by his desk whenever he needs a healthy reminder about how lucky he is.

The busiest single story is not even mine! I’m not sure how she does it, but this mother warrior tells a great tale and has attracted many readers.

The most popular over time is the information about methyl B12 injections. I continue to refine and update that page; as well as to report that, under professional direction, this is one of our most effective medical therapies.

I am rarely at a loss for words about the epidemic of childhood developmental issues. Loyal readers, have no fear: I have over 60 blogposts ‘in the can’, ready to be fleshed out, awaiting more information, and/ or more interest. There will be more conferences to report about, and new research to be presented and explained.

To me, these are more than just stories.

Ten Tips to Navigate the New DSM-5

Sunday, January 26th, 2014

DSM45A recent medical report predicts that the latest iteration of the criteria required to assign a formal diagnosis of ASD will result in a decreased number of reported cases. In their conclusion, the authors state, “this effect could be tempered by future adaptation of diagnostic practices and documentation of behaviors to fit the new criteria.”

The hype seems to be that there isn’t so much of an epidemic as advertised. Some think the new standards will be a more accurate reflection on the scope of the problem. It could mean that parents who believe their children need treatment will have less access to services, because required DSM-5 criteria may not be met.

Parents and practitioners need to understand the landscape because useful interventions might not be afforded to those who can benefit most. Therapies are more likely to be successful when there is less functional impairment.

For better or for worse, families that utilize, and/or expect to receive services, will probably experience little change.

These tips might help make sure that your children get the treatments they need.
1. It’s complicated. Try to familiarize yourself with the pertinent changes in the new criteria as they apply to your child. For evaluation and treatment purposes, don’t be concerned about other conditions that have been added or left out, if they are not your child’s issues.

2. Though Aspergers’ patients may be upset that there is no longer a defining nomenclature, communication disorders are now included in a much broader sense, actually. So, take advantage of available interventions.

3. Because PDD-NOS is now incorporated, developmental interventions should become available for a wider variety of conditions, which may not have been supported in DSM-IV. If your child has been given this diagnosis previously, and few/no services were offered, such inclusion should help.

4. Documenting the level of impairment requiring support is imprecise and quite subjective. Pointing professionals in the right direction will help ensure that services are ordered.

5. Although “impairments in communication” have been eliminated, there are several other designations that cover many commonly observed problems. These include deficits in conversation, relationships, and speech.

6. One requirement for diagnosis is the demonstration of “Restricted, repetitive patterns of behavior…” Just about all stimming is going to fulfill this criterion. Plus, sensory symptoms are now included.

7. ‘Social interaction’ continues to be a key issue for the ASD diagnosis. Clinically, kids who don’t/won’t play are a real challenge. Make sure that any formal assessments include this deficit, if it exists in your child.

8. It took 17 years to get to DSM-5. Supporting information appears to be more than 3 years old; so, in an evolving epidemic, we still might be missing the mark. The good news is that the powers-that-be seem to demonstrate an open mind, at least in the conferences that I have attended. Formal evaluations may require frequent revisions to stay up to speed on this moving target.

9. No longer should doctors assign the mushy “Oppositional, sensory, ADHD, poor focus, developmental delay” diagnosis. It’s called Autism Spectrum.

10. In this highly fluid environment, the doctors, teachers, administrators, therapists, and other professionals involved in your child’s care need to stay up-to-date, so that they can steer you in the right direction.

Emails from a Parent Concerned about Autism

Monday, January 13th, 2014

We get emails galore at The Child Development Center. The following exchanges (which took place over 7 months) are from one insightful, articulate and appropriately concerned mother.

Such correspondence is representative of the majority of questions that accompany this complicated process of improving health so that therapies can take hold and reverse the signs and symptoms of the epidemic that is presently called ASD. This Mom covered it all!

Mom: Hi doctor… I’m just scared that my son won’t play like other kids.  I get depressed sometimes about this but do you think my son will be normal again. Do you think my son will be ok ? Will he talk soon?

Dr U: We will do our best… we are quite successful, so let’s see how the first couple of months go, and you will know much better.

Mom: He still he has not said a word yet.  Still in a bit if his world. I know you told me baby steps, but how long? A month, two months?  I’m anxious. Thank you for listening to me.

Dr U: Is he babbling any more, pointing, using signs… other signs of increased communication?

Mom: He moves his lips. On Saturday he said more. He doesn’t babble like a baby. He tries, but not that much comes out. He does point a lot.
Mom: Hi doctor I’m sorry again, but do you think my son will be ok like the other kids playing with them talking? I’m just worried. No words are coming out of his mouth.

Dr. U: That is what we are working towards. It is months that matter, not days or weeks.

Mom: What is asd tympanostubi is that something bad what?

Dr U: Huh? I think that you mean tympanostomy tubes… surgical placement of venting ducts in the ears for children who suffer repeated ear infections. In the past several years, I have become more comfortable with the procedure, especially since it decreases the intake of antibiotics.

Mom: It has been two going three weeks and nothing yet… Do they get more aggressive when taking that probiotic, like… crying, or wanting to talk but can’t. You know what I mean, right? When should I expect him to talk? Do you think he will talk before he turns 3 or after? He’s a very intelligent boy. He knows his alphabet, numbers for his age. He’s intelligent but the thing is, he has to talk and play more – run, jump – more activities outside, so he exercises. Is he lazy? He wants to be sitting all the time.

Dr U: Yes, the change in behaviors could be due to the probiotics, and his new development. So, I can’t guarantee or predict the speech, I can only promise that we can make him healthier and that should lead to typical development.

Mom: Thank you for responding fast, but, what did you mean when you said that you can’t guarantee speech? That he won’t talk at all or he will? Will he be running like other kids do?

Dr U: You worry a lot… that’s what a mom should do. Please keep doing the protocol and we’ll talk at the visits in more depth.

Mom: Yes I worried a lot…But you are not answering my question. Will my son talk soon or not? What did you mean by “I can’t guarantee or predict speech”?

Dr U: I want to be honest and reasonable. No one can predict those things with certainty. Again, let’s wait until the next visit and see the progress and we will be able to tell you more.

Mom: I was reading about vaccines – do they cause autism? Do they contain Thimerosal? What About MMR? When he turns 3 years what should I do? With the blood work will you tell me if it was the vaccine that caused autism? Or was it genetic ? I read so many stories of autism that everyone tells you different stuff about it that makes me scared.

Dr U: Since you are on the ‘net already, please read my blog(s) about this complicated issue.

Mom: Is Asperger’s the same as autism? When you said << my child >> has mild-to-moderate autism what does it mean autism spectrum or Asperger?  I was reading on google…

Dr U: Autism is one of the reasons for delayed development in childhood. Asperger’s may be one kind of autism. Mild to moderate means that there are behaviors that are good, and some that need to get corrected. If you want to read the Internet, www.theautismdoctor.com is very accurate.

Mom: When do I have to stop the probiotic? When he gets constipated he is acting very alert and hyper – it’s that ok?

Dr U: Please, don’t stop the probiotic… If things are ok we will move forward with this protocol.

Mom: How did the blood work come out? Can you tell me something?
Mom: I have some questions about the vitiams b12 injections; will that hurt, will it burn when the liquid is going in? Will my son be safe ??? I’m scared if I have to inject him. How will I do? Are those injection inside his skin like a vaccination – please tell me more about it??? My son will start school but won’t be able to talk. Also, he will be getting his tubes next week, what should I do?
Mom: I want to ask you if hepatitis A vaccination is ok – that’s what he’s going to be getting. He will start School pretty soon. One more thing is the b12 subcutaneous – will that hurt if we don’t inject the right way? I’m afraid to inject my son – it is going to be my responsibility, if something happens to him. I don’t want anything to happen to him. Is that safe? I know I asked you that already, but my son is in your hands and I still don’t see any talking yet – no mouth movement. So, hopefully, with the school and the b12, there will be more improvement. He will also be getting his tubes in his ears next week.

Dr U: Hepatitis A vaccine seems to be important – there was recently a HepA outbreak from some frozen berries in the western US. The mB12 shots shouldn’t hurt – think about a diabetic child who has to get 3 or 4 shots per DAY!

Mom: I’m a little bit concerned. My son has been bleeding  from his nose for two days. Could that be ’cause he is taking too much vitamins, or what could that? He bleeds, but not too much just from one nostril and that’s it. 

Dr U: It is normal, your son’s blood count is OK, and it isn’t the vitamins.

Mom: My son had his ear tubes put in already and everything went great. But I’m still concerned that he’s still bleeding from one nostril. I’m going to make a doctor appt. That is not normal for him to be bleeding and it started when we gave him all that vitamins. I’m not to sure about giving him to much vitamins. What do you think?

Dr U: I think that, if his development is moving along in a good way, you should stay that course.

Mom: But the thing is he’s not talking yet. No mouth movement yet.
Mom: I was given my son the medicine melatonin with yogurt but he threw up. What should I do?

Dr U: Some patients have even put it on pizza (not too hot though), so it should work in anything – not sure why he vomited, but maybe try it in something else and let me know.

Mom: I got the injections already. Should I start on Monday or wait another week with melatonin? What do you think?
Mom: I need a letter from you with the diagnosis, so he can get more therapy. Please, if you can fax it to me… Anther thing I wanted to ask you is how long does it take for the vitamin b12 injections get effective for my son to talk or say at something? I’m very disappointed ’cause it still hasn’t worked yet. He has gotten two injections already on Monday it will be his third one. Please let me know if I’m doing something wrong.

Dr U: Letter created and sent, 3 days later.

Mom: We have a problem. The last injection he had, he got so tight that that fluid was coming out again. What should I do? The nurse does not want to inject him any more. If you tell one of your employees to come to my house in the morning to inject my son,  please, I will pay them. We can’t – he’s to strong he gets very tight muscle contraction and the fluid comes out help please… I hope you got my message earlier. I need to know what to do so my son doesn’t get so tight that his muscle contracts and so the fluid starts coming out… I’m very depressed and anxious and it is to hard for me to stick him. Please call.
Mom: Thanks. I saw some videos, but my concern is how long will it take him to talk? There have been 3 shots already and still nothing is coming out from his mouth. How long after do I have to wait? Sorry I’m being annoying. The thing is, I’m concerned that my son is not talking yet. What else does he need for him to start talking? 1. B12 shots 2. Therapy 3. ——– I don’t know please tell me?

Dr U: You are not annoying… you are an appropriately concerned mom. I just can’t guarantee what/when is going to be the key to helping speech and language. My experience is that it can take up to 8 shots (1 month), but improvements happen before that (more verbal, singing, eye contact). So far, we’ve been doing OK. This is difficult, but if you and the family are seeing some progress, that should help you get the support that you need to see this through.

Mom: I wanted to know if I should do an MRI? I just want to know how much he has and everything. What does a MRI tell you about autism? I made an appt for the MRI. They said it will take up to two hours for the MRI ’cause they order the BAER. What do you think  - can he be put to sleep for two hours? She said first they give him something liquid to calm him down, then either IV and the mask. What do you think? I’m just scared?

Dr U: The MRI will probably show no abnormalities – if the child has never had any seizures, this would be even more likely to be negative. With that in mind, I do not see the need for an MRI at this time if you are concerned about the anesthesia.

Mom: Hi doctor I have few concerns. I want to enroll my son in ABA, but they don’t take my son’s insurance. So I have to pay out of my pocket and you know that program is expense. But my concern is, when they asked me who was the doctor who diagnosed my son with autism, when I said your name, no one has heard about you. They asked me if you are a psychologist or a neurologist. When I say a DAN doctor, they don’t know…What am I supposed to show those people?

Dr U: This spawned a flurry of email and faxes to demonstrate that I am a medical doctor, Board Certified in Pediatrics and Neonatal Perinatal Medicine, with my most recent special training provided by the Medical Academy of Pediatric Special Needs.

Mom: The ABA therapist came over and did and evaluation… The reason why I’m writing you is cause she also mentioned to me about speech apraxiaShe asked me to tell you if you can diagnose him with that so I can give it to CMS Title 21 to the insurance company, so they can approve more hours in speech.

Dr. U: Speech is one of the earliest communication skills. Next, comes understanding. Sometimes, understanding comes first, and then the child can become very agitated, and display other behaviors. Yes, speech apraxia - the inability to speak – is a concern. I have documented this diagnosis in your child, already. I think that the course that we are pursuing gives children the safest and most reliable choice, and I am glad to review other options with you. Of course, S&L therapy is indicated.

Mom: But do you think that he will not talk at all ever? What do you think ? What else should I do? Put him in more speech therapy, like I was told by a speech pathologist ? Like you said, this is a major concern. Will he talk ever?

Dr U: Well, that is why we are giving any protocol that is reasonable and successful the best chance. Speech and language therapy, in addition to the biomedical, is ‘what the doctor ordered’.

Mom: I was reading your article on autism and apraxia was is the difference between those two? Is that something that autism kids have also ? Or is that a different diagnose ? Can my son get worse or better in the future? Will the Aba, plus speech and Ot therapy help him get better or will he need something else?

Dr U: Speech apraxia – the inability to speak when you want to – is one of the symptoms of autism. The biomedical protocols that we are doing, plus ABA and Speech and Language therapy is the most likely to have success. All of the other protocols that are out there are VERY EXPENSIVE (> $4000 up to $20,000) and have not been documented to work. There are no pills for this and you can’t buy your way out of autism/apraxia.

Mom: What else can I do for my son? Speech aphasia is that something to worried about?

Dr U: Yes, speech apraxia – the difficulty with your child’s delayed speech – is something to be concerned about. We are doing our best.

These are the exact thoughts and letters of every one of our families. Autism, especially when there is speech apraxia, is one of the most difficult diagnosis I have ever encountered, as far as 1) the reason for the problem and 2) the treatment(s).
Parents, I understand your worries.

Vitamin B12, Reflux and Autism

Sunday, December 22nd, 2013

Periodic subcutaneous injection of methyl B12 is one of the most effective treatments for many children presenting with ASD. The vitamin improves autistic signs such as speech apraxia, ‘fog’, and low muscle tone. This therapy often addresses downstream symptoms such as aggressive behavior or solitary play.

So, the scientific paper that was recently published in the Journal of the American Medical Association that details the deficiency of B12 in patients who use common over-the-counter antacid preparations begs the question of whether there is an iatrogenic cause to the growing number of patients, diagnosed in infancy with GERD, who now have a “Spectrum” condition and seem improve with MeB12 treatments.

This isn’t the first article declaring difficulties due to anti-reflux medications. In 2009, The Harvard Family Medical Guide asked the question “Do PPIs have long-term side effects?” Complications from such preparations include:
√ Decreased direct digestion because of a less acidic environment.
√ Pepsin, a digestive enzyme, requires an acidic environment.
√ Stomach acidity is a built-in barrier to infection.
√ Increase in Clostridia difficile, which has been implicated in autistic behaviors.
√ Affects the body’s absorption of calcium, affecting regulatory pathways and mitochondria, which has been implicated in autism, especially those associated with certain gene types.

There are many books about the subject, the most recent and popular one questioning lots of misdiagnosis that could be due to low levels of this crucial substance.

What makes the recent research important is that it details long term use. Researchers found a stronger association with PPIs and H2RAs in younger age groups. Use of more than 1.5 pills per day had a higher relationship than less than .75 pills per day. How many pills did/does your child take? Plus, this study considered adult patients.

Conventional medicine is used to assigning the diagnosis of low levels of B12 to a condition known as pernicious anemia. That is an extreme condition due to the absence of a special protein that is made in the stomach. The patients in the newly published study were diagnosed on low B12 levels alone. The vitamin helps make red blood cells that carry oxygen. Patients may feel tired, weak or have problems in other organs throughout the body.

As I previously reported, one possible cause of the increase in GERD is the practice of putting infants on their back, which has decreased the incidence of SIDS. However, infants may be more likely to regurgitate in that position, resulting in the medical diagnosis (GERD) and pharmaceutical intervention (PPIs and H2RAs).

There are many associations that require further investigation as we try to put this puzzle together. GERD, fungal overgrowth, poor muscle tone, poor sleep, loss of social interactions, and other autistic behaviors could be part of a vicious cycle.

This connection with pharmaceutical intervention for GERD needs to be highlighted. Pediatricians and other specialists should investigate the cause of GERD, use safe and effective interventions, such as probiotics and positioning, and avoid causing more potential harm.

Pediatric Special Needs Include Autism

Saturday, December 14th, 2013

Recounting events that take place over just a couple of days at The Child Development Center provides me with the opportunity to paint a picture* about state-of-the-art medical care for complicated pediatric development. This is a newly emerging specialty, which is now presented as a fellowship of the Medical Academy of Pediatric Special Needs.

It is of utmost importance that patients receive a correct and precise diagnosis. That should lead to the most specific treatment(s), presumably with the greatest chance of success. Autism, unfortunately, is not a precise diagnosis. There are multiple causes for the unusual behaviors or physical properties that bring concerned parents and their children to our medical practice.

AM Any_Day: This was the third follow-up visit for a 3-1/2 year-old boy who has “escaped autism.” What a patient set of parents! They have understood the difficult journey, taking their at-risk child to the next developmental level, without the use of stimulant or anti-anxiety medications. In this case, the child demonstrated an inability to tolerate oral glutathione (for poor muscle tone). Only a course of anti-fungal medication complicated our otherwise positive road to a resolution of the majority of behavioral concerns.

Then, there was the second follow-up visit of a moderately affected 2 year-old. Four months earlier, he spoke just a couple of words, demonstrated repetitive arm and body movements and appeared in a profound fog. Now, the child interacts with his parents and is speaking. G-I problems were his main initial findings that, when addressed, assisted in his improvement.

This was followed by the fourth follow-up visit of a 3 year-old girl who first presented six months ago. As an infant, there was GERD, and speech was significantly delayed. This child’s food allergy panel was especially unusual. With strong probiotics, appropriate vitamins and supplements, plus occasional anti-fungal treatment, she has been able to make great strides toward an optimal outcome.

That afternoon: 4- and 6 year-old brothers whose level of complications equals the most difficult patients in the practice, from a diagnostic and therapeutic perspective. The older boy is brilliant but has behavioral challenges that are responding positively to treatment. The younger one has yet to show much positive response in his communicative abilities. Mom is incredibly knowledgeable and, together, we explore reasonable strategies to address their continued delays.

Following that, there was a Central American family whose 3 year-old son presented eight months earlier with moderate-to-severe ASD, including speech apraxia. We discovered his significant gluten, casein and egg allergies, and vitamin D deficiency. He presently has more than 100 words (español, por supuesto), makes eye contact and plays with his parents. Mom and Dad do not care that, “There are no studies demonstrating the efficacy of dietary interventions…”

AM Next_Day: New patient, a preteen with P.A.N.D.A.S. This story needs a blog of its own.

Another new patient, a 5 year-old with mild signs and symptoms of his earlier autism, treated with conventional therapies. Socialization and other behaviors concerned the parents enough to seek interventions while hoping to avoid stimulant and/or anti-anxiety medications.

And, it’s not even ‘hump’ day. Plus, there are all the calls, letters, charting, emails, labs and support personnel necessary to assist these determined families.

Each of these patients presented with a unique diagnosis requiring evaluation and treatment protocols that were unknown to me, ten short years ago. From this pediatric specialist’s perspective, there is a whole new world of complex developmental problems, and they require very special consideration.

*To protect anonymity, the dates and names of patients have been randomly selected

Speaking of Autism Speaks

Monday, December 9th, 2013

Bob&Suzanne Wright, with Grandson (from Autism Speaks Website)

There has been a controversy brewing lately, involving the organization Autism Speaks. Facing a Congressional audience to address the epidemic, Suzanne Wright, co-founder and major contributor, expressed what has been categorized as inaccurate, overstated, or alarmist language.

The Wrights are important figures in this condition, who have taken autism to another level of public awareness, funding and research. Mrs. Wright is a concerned grandmother who completely understands the problem. She has created the infrastructure and the horsepower to make an actual dent in the solution.

The resignation of Autism Speaks’ Board Member and  ‘Aspergian’ John Elder Robison has increased polarization. He was quoted as stating that, “he cannot support the organization due to their tendency to portray autism in ways that are offensive to individuals with the diagnosis.” One Autism Society father expressed his opinion that, “They represent a philosophy of feeling sorry for ourselves and seeing tragedy in our children and adults on the spectrum.”

It appears that there needs to be other, more specific diagnoses. One for individuals who can defend themselves (and their families who have embraced the situation), and another for those who can’t, even if they wanted to (and their families who wish to find a cure).

Politics in not-for-profit organizations is just as divisive and controversial as any other Board of Directors. Our local Autism Society of America/Broward County Chapter/Florida Chapter – I can’t get it straight any longer – is a perfect example of this phenomenon. Should the proceeds of the Dan Marino WalkAbout for Autism go to this school, that service company, or those needy families? We couldn’t agree, and there was a split in our tiny charitable world.

A small but brave contingent in one local chatroom has expressed this same belief, that the Wrights are heroes. We should be more understanding of their strong desire to recognize the epidemic and leave no stone unturned in the search for answers. The Diagnostic and Statistical Manual of Mental Disorders (versions 4 and 5) lists the condition as Autistic Disorder. That means ASD is a recognizable medical condition, requiring treatments that may address and correct signs and symptoms.

There has been a great deal of criticism regarding the tactics, language and funding choices that Autism Speaks employs. It is now the largest organization representing people with autism in the U.S., with worldwide affiliations. The families that are affected will continue to flounder if there is division, misunderstanding, and poor organization.

This public discord disavowing such an important philanthropist and her charitable organization is less than helpful. It confuses perception – not just of Autism Speaks, but of the condition itself. Ultimately, we all have got to find a way to work together.

Escaping Autism

Saturday, November 16th, 2013

With increasing frequency lately, this medical practice evaluates another child who displays a combination of signs and symptoms that can best be explained by the term, “Escaping Autism.”

There appears to be some common connection involving the parents’ chief concerns, physical examination findings, laboratory results, response to treatment and residual behaviors. It is something that you just can’t put your finger on.

There may be sensory difficulties, problems with focus, heightened anxiety, ADHD, ODD, G-I issues (from GERD to constipation), allergies (from asthma to eczema), repeated ear infections, low muscle tone, poor sleep, very restricted diet, or decreased eye contact – in some combination that doesn’t seem to be supported as a separate diagnosis in the present scientific literature.

The condition is not “classical” autism because the patient lacks symptoms in one or all of the 3 key global domains (social isolation, repetitive movements or restricted interests, and the inability to communicate). Why not call it PDD-NOS? Actually, such a diagnostic assignment probably represents the present, most accurate classification. However, there are so many conditions included in that “waste-basket” category; it begs to be picked apart as more precise situations become apparent.

“Escaping Autism” represents a more simple, unifying proposal (Occam’s Razor). Such a diagnosis adds to the modern pediatricians’ toolbox by documenting identifiable signs and symptoms that may be amenable to effective medical interventions. This is a newly described association.

A “Spectrum” of difficulties that are now considered separate childhood disorders may also be viewed as a unified picture of multi-system involvement. This clinically distinct syndrome may change and evolve as the interplay of behavioral and/or functional changes mature in the individual patient.

Some good news is that, as in other medical disorders, the less severe the presentation, the smoother the clinical course. After all, mildly asthmatic patients who can be treated with inhalants and kept out of the hospital are a lot easier to manage than those requiring frequent therapeutic alterations. The professional workup should include routine blood tests and more, depending on the symptoms and practitioners’ findings. Appropriate interventions, based on clinical and laboratory data, would follow.

Such information is not well-accepted in the conventional world. There might be a great deal of pushback from allergists, neurologists and other pediatric subspecialties. Negative initial responses may be misinterpreted as a sign that treatments are not proceeding on the correct path. Should there be a rocky course to recovery, families are less likely to remain patient, especially in a ‘higher functioning’, non-autistic individual. Plus, there is the chance that the child will continue to improve, with or without intervention.

Could these patients who have “Escaped Autism” represent the tip of the iceberg involving an emerging additional developmental diagnosis? Are such children the next “canaries in the coal mine“? Considering that ASD may represent the perfect storm, comprised of modern environmental stressors acting upon genetically susceptible individuals, one more genetic variance, or one more toxin, could result in additional parents who find their offspring have gone ‘over the fence’, so to speak.

As far as taxonomy goes, a clearer nomenclature will unfold as increased numbers of children demonstrate this cluster of symptoms and successful treatments come to light.
One of our patients has suggested that we call it NAUTISM!

Really Scary Autism Treatments

Thursday, October 31st, 2013
E. Willingham

E. Willingham

Emily Willingham, a Forbes blogger who frequently waxes less-than-sympathetic in her stories concerning autism, recently posted her Five Scariest ‘Treatments’. While I do not disagree with some of her picks, I take issue with the tone of the blog and the absence of recognition about the real culprits in autism treatment debacle.

Willingham displays an apparent lack of understanding about the frustrations suffered by the autism community, the paucity of useful research and treatment options, and the desperation of parents seeking answers. “Autism invites its share of quacks. In fact, it might have more quacks in its vicinity than a duck pond,” was her preamble to the story-in-question.

What about the most common treatment options? How scary are they? Although the conventional ‘autism meds’ may reduce some behavioral signs and symptoms, even proponents make no claim regarding improved speech and language, cognition or social isolation (that is, many of the core symptoms of autism).

  1. Risperdal – side effects include “agitation, anxiety, constipation, dizziness, drooling, drowsiness, enuresis, fatigue, hallucination, headache, increased appetite, increased/reduced blood pressure, increased serum prolactin levels, indigestion, insomnia, rapid or irregular heartbeat, restlessness, runny nose, sleepiness, vomiting, weight gains, withdrawal dyskinesias.” PLUS, it “…may mask signs and symptoms of drug overdose and of conditions such as intestinal obstruction, brain tumor, and Reye’s syndrome, may also cause difficulty when swallowing, which in turn can cause a type of pneumonia, may cause… a condition marked by muscle stiffness or rigidity, fast heartbeat or irregular pulse, increased sweating, high fever, and high or low blood pressure. Unchecked, this condition can prove fatal…”
  2. Abilify -”can cause the following side effects: headache, nervousness, drowsiness, dizziness, heartburn, constipation, diarrhea, stomach pain, weight gain, increased appetite, increased salivation, and pain, especially in the arms, legs, or joints. More seriously, it can sometimes cause seizures, slow, fast, or irregular heartbeat, chest pain, changes in vision, unusual movements of your body or face that you cannot control, high fever, muscle stiffness, confusion, sweating, rash, hives, itching, swelling of the eyes, face, mouth, lips, tongue, throat, hands, feet, ankles, or lower legs, difficulty breathing or swallowing, tightening of the neck muscles, tightness in the throat…A small number of children, teenagers, and young adults who took medications for depression during clinical studies became suicidal…”
  3. Prozac and Zoloft are the new kids on the block. I treat numerous youngsters who have been put on non-FDA approved medications by child neurologists and psychiatrists. The side effects are similar to those listed above, without any formal path for reporting adverse events. I suppose that the conventional doctors don’t have to play by the same rules as they espouse (as in, “there are no studies showing safety or efficacy…”).
  4. Pepcid, Prilosec, Zantac and Miralax®. I have included these gastro-intestinal preparations because, a) The need for such medication is an important, often ignored, clue to the type and cause of many presentations of autism, and b) Instead of exploring G-I signs and symptoms, traditional medicine often minimizes their significance or even compounds the situation with inappropriate drugs.
  5. Stimulants, including Focalin, Concerta, Vyvanse, Ritalin, and Adderall in various combinations, dosages, and frequencies. These are medications targeted to ADHD (hyperactive or focus) symptoms. Many ASD patients do not have autism AND hyperactivity (as a comorbidity); rather, they have signs and symptoms appearing as ADHD because of their delayed social development and resulting immaturity. Just because your child is stoned and more compliant, it doesn’t mean that the medicine ‘worked’.

Dr. Willingham is personally touched by, and has previously demonstrated understanding and empathy toward ASD patients and families. However, the autism community is not as ignorant, simple-minded, gullible or unaware as this expert cautions. It’s the vaccine effect. Anyone who doesn’t understand that all vaccines are good for all children all the time must be in need of her advice on all things concerning ASD.

If families experienced more genuine understanding from the medical profession, and if the scientific community could spend more time on useful research into current and future treatments, there would be less need for all of those self-important warnings about which treatments NOT to explore.

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Brian D. Udell MD
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Davie
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