Posts Tagged ‘advice’

Early Experience with GcMAF Therapy for Autism

Sunday, February 2nd, 2014

This is a very preliminary report about our first 15 patients who wished to administer a trial of GcMAF for their moderate-to-severely affected children, whose primary diagnosis was ASD.

Treatment utilizes a substance derived from a purified blood product, administered weekly by subcutaneous injection. It is supposed to help ‘heal’ the immune system. The background information was first described here.

Patient profiles:
♦ All of the children had a complete history, physical examination, laboratory testing, and various other interventions, and were under Dr. Udell’s care.
♦ All of the children were either on/ or had experience with conventional therapy (ABA, S&L, OT, PT), complementary and alternative therapies (‘DAN!’), and multiple medications; from Risperdal to Prozac (conventional), Namenda to Bumex (experimental), stimulant meds to anti-anxiety preparations.
♦ Patients were diagnosed by a pediatric neurologist, confirmed and documented at each Child Development Center visit.
♦ All the children had severe speech apraxia, with very little improvement from years of S&L therapy, prompting the parents to want further options.
♦ All of the children demonstrated various and persistent repetitive behaviors, sometimes quite disruptive and/or abusive (to self and/or others).
♦ All of the children experienced social isolation.
♦ All of the patients had elevated nagalase levels (>0.95) prior to therapy.
♦ Parents were made fully aware of: risks/benefits/other therapies/no therapy and wished to proceed.
♦ All the families kept in close contact with our staff and Medical Director.

Present protocol:
 The original explanation can be found here. With increasing experience, some variations have taken place, and a more conservative protocol has evolved:
• Families obtain the product from here, and are instructed to keep the vial in the freezer. • Small syringes are ordered from the local pharmacy.
• Most of the patients prepared syringes for 5 months, freezing them for storage and hand-warming prior to administration.
• Instead of weekly abdominal or arm ‘shots’, a narrow angle into the buttocks appears to be well-tolerated.
 In addition to routine laboratory investigations, vitamin D and cholesterol were addressed before initiating therapy, by testing and intervention as necessary.
 The initial dose was tiny (0.02 cc) and increases were decided each week after discussion with our staff.
 Parents agreed to keep in close contact with the staff and give weekly reports about any changes.

Experience so far (1 – 8 months):
Older (> 5 years) seem to do better than younger children, as far as improvements in communication and behaviors.
In the first months, some patients have reported no change, others show dramatic improvements in signs and symptoms, and still others have exhibited very challenging disruptive behaviors that diminished with time.
 Most parents were satisfied enough to re-order the product without nagalase re-testing or even an observation period without GcMAF.
To date, improvements appear most dramatic in the preteen females.
√ Two younger males discontinued the treatment because of no effect.
√ No parent discontinued treatment due to negative effects.
Side effects included initial hyperactivity, rashes, mild fevers.
In many of our patients who were tested – and found to have elevated nagalase levels – the parents were satisfied enough with their present protocol of G-I optimization and mitochondrial support, and have not initiated this therapy, so far.

No definite assertions or conclusions can be made, from this limited trial, at this time.
I have been impressed, however, at the dramatic improvements that some of children have made. This includes speech acquisition and usage, cognitive function advances, and behavioral changes.
GcMAF does not work in every child, but the ones who do improve have experienced change that hasn’t been apparent in many years.
So far, safety is best assured by close contact with the parents so that weekly dosages can be altered and other interventions, such as yeast treatment, can be provided.
Costs are kept to a minimum because families order and obtain the supplement directly from the manufacturer.

A more detailed report will be submitted to various appropriate venues for review and publication. Hopefully, someone will take notice and perform a more rigorous evaluation. Parents of affected children simply can’t wait for this information, if the treatment is safe enough, not too costly, and reasonable to administer. After all, medications that are approved for behavior control are expensive, as well. Furthermore, at their best, traditional pharmaceuticals possibly diminish aggression and hyperactivity, but don’t improve neurologic function.

As in all medical conditions, if you are considering GcMAF therapy for your child with moderate-to-severe ASD, you should seek advice and treatment only from a trusted professional who has examined, and is closely following, the patient.

Book Review – Ido in Autismland

Saturday, January 18th, 2014

Because autism is such a mystery, reading about it from the first-person point of view can be extremely instructive. That is why the story, Ido in Autismland, is so important to this medical professional.

There are similar recent books and videos, authored by affected individuals who convey their thoughts and feelings, so that neuro-typical readers may better appreciate underlying difficulties that lead to their unusual behaviors. What makes this different are the insights provided by penetrating and descriptive prose that transports the reader into Ido’s conflicted mind. It’s like The Reason I Jump on steroids.

Often, the issue of facilitated communication – another person involved in the download of information – is a key sticking point to establishing that such writing represents the actual thoughts that were being put forth. The teenage author makes a concerted and convincing effort to assure the reader that the information does, in fact, come from his mind alone.

Notable insights
The ability to communicate, and the lack thereof, has been the dominating force in his development. The subtitle is “Climbing Out of Autism’s Silent Prison”.

Ido emphasizes that his receptive language far outpaces his expressive language. Even if he believes he knows the correct answer to a question, it sometimes comes out of his mouth incorrectly (or not at all), due to his severe speech apraxia. This is mind bending.

Stimming is helpful, anxiety reducing, euphoria producing, embarrassing, nearly impossible to control and sometimes results in disruptive behaviors that even Ido can’t explain.

In addition to spoken language, the young author complains that generalized apraxia – the inability to move a variety of his muscles correctly – also interferes with his affect, hand movements (sign language and even pointing were a challenge), and the ability to interact properly in social situations.

Lack of empathy, or a sense of humor is not a sign of autism. That is merely how it appears. This kid has got soul, and he’s funny.

Ido’s exhortations to medical science give me help and hope.

If you are the parent of a young child who has been newly diagnosed with ASD, or suspect it, and you are seeking further information, this may not be a helpful read. Parents will do better to investigate medical problems, such as; G-I signs and symptoms, allergy related conditions, sleep disturbance, or other specific developmental concerns. As particular disorders are successfully identified and addressed, many atypical behaviors can be ameliorated and even prevented.

If you are an observer of this epidemic, AutismLand is an interesting read. Everyone can learn something from this journey through the mind of such a unique child.

If you are a professional who works with people with autism, you need to read this twice. The first time will be disturbing and challenge many of the basic beliefs. The second time, understanding will creep in and you will think of ways to incorporate such knowledge into your practice.

If you are an affected individual, or the parent or family member of an older child, this is a must-read. Ido discusses a variety of topics that will educate, enlighten and even entertain those who are trying to understand AutismLand.

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, 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.

Sensory Processing in Autism – 2

Saturday, January 4th, 2014

I was sprucing up some files, recently, and accidentally deleted my original post on this subject. Hours were spent attempting to recover that essay. And, yes, Virginia, I did back up – do file recovery programs ever actually work? I finally decided that, since the initial story was already more than a year old, the topic required a re-visit.

What sparked my original discussion was a recommendation from the AAP that advised clinicians to take a “Careful Approach to Using Sensory-Based Therapies.” What I thought back in June of 2012, and I still feel today is, “Are you guys f*$#ing kidding me?

Any parent of a child ‘on the Spectrum’ is fully aware of the problems and limitations due to ‘sensory issues’. ‘Concerned caution’ makes the AAP members appear insensitive and best, and ignorant at worst. Affected children might smell everything, bite or lick anything, bounce more than a kangaroo, hear sounds that you didn’t even know were there, and/or demonstrate unusual eye movements.

Is there such a condition?

  • A 1997 paper in The Journal of Autism and Developmental Disabilities  warned, “Evidence from clinical studies suggests that unusual sensory responses are present in a majority of autistic children… However the clinical and experimental research to date suffers from serious methodological limitations and more systematic investigation is warranted.”
  • In 2003, a study in the same journal “indicated that neither overall developmental level nor IQ was related to abnormal sensory reactivity in children with autism or general developmental disorders. However, abnormal sensory reactivity had a significant relationship with overall adaptive behavior.
  • By 2011, an NIH funded studySensory Processing in Autism: A Review of Neurophysiologic Findings, documented the presence of such a condition.
  • This past year, the journal NeuroImage: Clinical published, Abnormal white matter microstructure in children with sensory processing disorders, which reports the ability to see the problem, using technology.
  • An excellent academic review of the topic appears in this Child Mind Institute report.

What is the cause?

  • The recent literature demonstrates differences in the neural pathways of patients with autism. There is evidence of over-, under-, and cross- connectivity. Variations in processing speed have been documented, as well.
  • In clinical practice, the most obvious problem appears to be a lack of filtering. Affected individuals report that lights seems brighter, sounds are louder (or not there at all), textures (sand, water, e.g.) seem more noticeable, tastes and odors appear more or less remarkable.

What are the symptoms?

  • Sight – Not looking where expected, poor eye contact, difficulty reading. Room color and lighting may appear disturbing, and some visual fields may be ignored altogether.
  • Hearing – Hands constantly going over the ears. Avoiding or running from certain sounds (the bathroom). Many children respond negatively to certain frequencies rather than the actual amplitude of sounds. Turning to voices may be blunted.
  • Smell – Bringing the face close to objects, people. Licking and smelling.
  • Taste – Restricted diet, picky eater. Problems such as constipation, diarrhea, fungus, less vitamins and minerals available and poor absorption.
  • Touch – avoiding or seeking input. Increased apparent resistance to pain. Behaviors that reflect anxiety. Social isolation.
  • Combinations – Hands to the face while grimacing and pushing into objects, for example.

What can be done?

  • ♦ Identify and address any underlying problem(s). A thorough workup should include a detailed genetic evaluation, auditory and visual examinations, metabolic (laboratory) studies, exhaustive history of the G-I system, documentation of muscle coordination and strength.
  • ♦ Conventional therapeutic interventions such as ABA, S&L, OT, PT. These are the proven treatments, which are especially helpful as an affected child is restored to proper health.
  • ♦ Targeted therapies such as hearing, visual, RDI and sensory diet techniques.
  • ♦ Treatments that address the cranial, sacral and other vagal nerve issues.

The moral of the story is that my accidental file deletion actually helped. It has lead me to a number of discoveries:
1) A renewed examination of sensory processing.
2) Learning more about data recovery.
3) A better backup strategy.

Autism Review 2013

Sunday, December 29th, 2013

Here is this year’s crop of stories (listed in Medical News Today) that I consider to be the most informative, interesting, and likely to change the knowledge base concerning the epidemic of childhood signs and symptoms presently called Autism Spectrum Disorder.

Can Children Lose Their Autism Diagnosis? - Uh, yes. And, many more than this group reports.
New Gene Variants Linked To Autism Discovered - The perfect storm of environmental toxins and susceptible individuals (genetic variation).
Epilepsy Drug Linked To Increased Risk Of Autism - The perfect storm of environmental toxins (medication) and susceptible individuals.

Feeding Problems And Nutritional Deficits A Significant Risk For Children With Autism - Ya think?
Attention Deficits Picked Up In Babies Who Later Develop Autism - The ‘Spectrum’ diagnosis involves a combination of signs and symptoms, not just the ‘core’ deficits.
Help Needed For Youths With Autism Spectrum Disorder Transitioning To Adult Health Care - Transitioning in general, don’t you suppose?
Autism Study Finds Behavioral Therapy For Children Can Impact Brain Function - So, the autistic brain can exhibit plasticity. Just like every other human brain.
Brain Connections Differ In Kids With Autism - There were lots of brain connection articles this year. The problem is understanding WHY the brains work that way, since it’s pretty obvious that some circuits are crossed and/or missing.

Study By Kennedy Krieger’s Center For Autism And Related Disorders Reveals Key Predictors Of Speech Gains - This is why it’s so important for kids to play with others.
Suicide Ideation And Attempts A Greater Risk For Autistic Children - Why doctors shouldn’t put teenage patients on anti-psychotic medications.
Old Drug Offers Hope For New Autism Treatment - This article covers it all; inflammation, immunity, the environment, mitochondria, stress and recoverability. It’s just in a mouse model, but offers a unifying theory.
One In 50 Kids Has Autism In U.S., CDC - And, we’re still arguing the ‘E’ word (? epidemic ?)
Gaze Shifting Delay Has Potential To Diagnose Autism At 7 Months - Plenty of research about earliest diagnosis, not much about how to intervene.
Multiple Vaccines Not Linked To Autism Risk, CDC - So they keep telling us.

Link Between Autism And Increased Genetic Change In Regions Of Genome Instability - The perfect storm… you get it.
Minocycline Show Benefits In Children With Inherited Cause Of Intellectual Disability And Autism - Some assistance for patients with Fragile X syndrome, one of the known causes of ASD.
Study Shows Different Brains Have Similar Responses To Music - Love of music is universal.
Propranolol Could Improve Working Memory In Autism - Several of the older blood pressure medicines perform in some fashion to help affected individuals.
Taking Valproate While Pregnant Raises Autism Risk - Drugs taken during pregnancy may not be good for the developing brain. Well, at least it’s in print now.
A Newborn’s Placenta Can Predict Risk For Autism - Now, there’s an early predictor! Again, what to do about it?
Significant First Step In The Design Of A Multivalent Vaccine Against Several Autism-Related Gut Bacteria - Formal recognition that there is a gut-brain connection in autism.

Researchers Successfully Treat Autism In Infant - OK, so maybe you can do something about the earliest red flags.
Early Intervention Program For Children With Autism Found To Be Cost Effective Through School Years - More documentation such as this is needed so that governments, insurance companies, and the like will take notice.
Link Between Epilepsy And Autism Found - The literature reports that 40% – 80% of patients have seizures (much lower at The Child Development Center, however).

A Third Of Autism Cases Also Have ADHD Symptoms - It’s not ALSO, it’s an integral part of the picture for some children.
Autism Discovery Offers Hope For Early Blood Test And Therapeutic Options - One of the reasons that I prescribe tryptophan (5-HTP) to address some ASD signs and symptoms.
Racial And Ethnic Disparities Found In Gastroenterology, Psychiatry Or Psychology Care For Children With Autism - Yeah, professionals need to get on the same page.
Air Pollution Raises Autism Risk - The environment. Again.
Single Mutation Can Destroy Critical ‘Window’ Of Early Brain Development - Genes. Again.
Autism In Children Affects Not Only Social Abilities, But Also A Broad Range Of Sensory And Motor Skills - Recognition of signs and symptoms that every parent of an ASD child observes. More such information was published subsequently.

The Gut May Offer Clues About Autism - By now, even pediatric gastroenterologists should be getting the message.
Autism Training Program For Pediatricians Meets ‘Critical Need’ For Earlier Identification - Until now, I don’t think that my fellow pediatricians are doing such a great job at early diagnosis.
First Full Genome Sequencing For Autism Released By Autism Speaks Collaborative - This kind of valuable information is why all of the parties in the autism community should work together, rather than criticize each other in public forums.
Early Intervention Benefits Young Children With Autism Regardless Of High-Quality Treatment Model - So, if early intervention helps, and we can make the diagnosis earlier, then the situation should be improving. Right?
Oxytocin not found to offer symptom relief in autism - A bunch of these articles this year, both pro and con. My experience is that it does help in a small percentage of affected individuals.
Fresh fuel reignites Asperger’s debate - Combining two conditions that we don’t understand – couldn’t that make us twice as ignorant?

Oxytocin, the ‘love hormone’ may have relevance in autism - This was one of the ‘pro’ articles.
New research sheds light on previously under-researched area of study – females with autism - We really need more information about the difference between boys and girls with ASD.
Induced labor linked to higher autism risk - Here is my advice (as a Board-Certified Neonatologist): Have the baby when the time comes. Sometimes, Mother Nature does know best.
Risk of autism in further children – study findings - This is the type of information that prospective parents frequently seek, and little is really known.

Young adults on the autism spectrum face tough prospects for jobs and independent living - This highlights why early diagnosis and intervention are so vital.
Genetic disorder 22q could be misdiagnosed as autism - Or, this could be just one of the causes of autism. No?

Improving understanding of brain anatomy and language in young children - This is the type of knowledge that needs to be elucidated as we try to solve this puzzle.
New cases of autism in UK have levelled off after five-fold surge during 1990s - Well, good for England (if it’s true). This is not the case in the U.S., or most other countries, however.
Autistic children look less friendly to peers - And, vice-versa, I would say.
Web-based autism intervention tool shows promise - Lots of tech stuff for autism appeared this year. I still like Proloquo2Go the most.
Link examined between pregnancy weight gain and autism spectrum disorders - An even EARLIER diagnosis. How about a fetal Speech and Language therapist?

Health-care changes needed to help adults with developmental disabilities - Much more information needs to become available to address the growing numbers of older individuals with autism.
Autism increases risk for synaesthesia - Maybe shedding some light on the sensory issues in ASD.
Relationship between bedroom media access and sleep problems among boys with autism - As if parents didn’t know this! Well, it’s official, now.
Gender differences in gene expression in male and female brains - I’ve described this clinical difference before. There’s the “girl kind”, and the “boy kind”.
Autistic children’s ability to perform everyday tasks improved by occupational therapy - This one should help with insurance reimbursement.

Genes and air pollution combine to increase autism risk - Circling back… genes and the environment.
Brain function in children with autism improved by a single spray of oxytocin - It works. It doesn’t work. Which is it?
Autism-like behaviors in mice alleviated by probiotic therapy - Human probiotics, by the way.
Research linking autism symptoms to gut microbes called ‘groundbreaking’ -  Well, it’s important, but groundbreaking? This association has been ‘documented’ since the “Refrigerator Mom” days.
Hospital infection in pregnancy tied to higher risk of autism - Perhaps it’s the antibiotics that are given, not the infection itself?

Hopefully, 2014 will bring more in-depth research with targeted treatments, so parents will have an increased number useful protocols to assist their developmentally challenged children.

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.

Books About Autism cont’d

Sunday, December 1st, 2013

Occasionally, texts appear that are so compelling, they are assigned to my Official Autism Library. The scientific stuff can be found in medical journals. These are stories about how people think, what they think about, and about their lives. What makes them really special is when insights are provided that assist our understanding about why affected children exhibit unusual or repetitive behaviors.

The Reason I Jump has been at the top of my list, lately, because it tackles perplexing questions about atypical actions. Written in 2005 by a 13 year-old Japanese boy with autism, this short story presents his insights regarding many such enigmatic gestures. There are several drawbacks, leading to controversies that surround the book, however.

First, is the issue of facilitated communication, the method by which challenged individuals are able to confer their ideas to the outside world. This is accomplished via another person, the facilitator. A subcommittee of the American Speech-Language-Hearing Association has issued detailed reports about this form of translation. There are a number of criteria that are utilized to ascertain whether the final product accurately reflects the author’s thoughts.

Another question concerns the complicated journey that the autobiography has taken from the Far East, 8 years ago, to the West, this year. The author, David Mitchell, is a fiction writer, best known for Cloud Atlas. As a child, Mr. Mitchell suffered from a severe stutter, and he has a child with autism. With his Japanese wife, Mr. Mitchell ‘discovered’ and translated the story, without apparently ever having met or spoken to the boy.

In the book, the child responds to 50 or so questions about “Why do you…?” Some are simple, “It may look as if we’re being bad out of naughtiness, but honestly, we’re not.” Other explanations, “What makes us smile from the inside is seeing something beautiful, or a memory that makes us laugh,” are even elegant. Many of the answers appear to be coming from a teenage mind, but statements such as “… and that saps the spirit we need to soldier on,” are not consistent.

Currently in his twenties, Naoki Higashida, the actual author, participates in this blog. There is much more that he could tell us now.

In autism, behaviors that appear to represent a given emotional state, such as anxiety, are often misinterpreted. For example, to call I’m-pushing-my-fist-on-my-chin when I am angry/happy/sad/confused/hungry/excited, an obsessive-compulsive personality disorder is surely and sorely inaccurate. Children who begin experiencing additional muscle tone and sensation in the area around their tongue and mouth may be demonstrating improvement in their speech apraxia, rather than suffering from a psychiatric condition.

Facilitated communication, etc. notwithstanding, I am a fan of this book.

  1. It adds to my repertoire of possible reasons that patients display unusual behaviors.
  2. The accounts are not inconsistent with those of other patients, such as the teenage girl featured in this video.
  3. Many explanations make sense as I observe patients’  downstream signs and symptoms.
  4. The information makes people affected with ASD appear so much more LIKE US than we think.
  5. Ultimately, what difference does it make how such knowledge becomes disseminated?
  6. Discussions about this book raise autism awareness.

This is only my second book review, so far, but it prompts the addition of a Recommended Books Section to the website.

Sit or Get Off the Potty – Toilet Training and Autism

Saturday, November 23rd, 2013

iPotty @Amazon ~$35

As in many things ASD-ish, instructions that usually work in neuro-typical children are not certain to shape up as expected. For example, advising the mom of an autistic finicky eater, “Just let him sit there, he’ll eventually eat,” could be a big mistake. The affected individual may actually starve rather than consume “that smelly thing.” (The Reason I Jump)

According to the History of Potty Training, the age of acquiring this important skill has actually gone UP over the years, as the ability to dispose of the evidence has gotten more convenient. In the middle of the last century, Dr. Spock introduced the Gentle Training Approach in his famous child-rearing text. “Readiness” placed as the first criterion in that successful approach.

Another pediatric authority, Dr. T. Berry Brazelton later advocated his “Child Oriented Approach,” which has become the most frequently offered advice, in one form or another, by the modern pediatric community.

Dr. B suggested that success depended on “the child’s interest and compliance in developing autonomous control… This was in instituted at about 2 years of age… Daytime training was accomplished by 2-1/2 years, first children slower.” 80% nighttime training was completed by 3 years, and males took 2-1/2 months longer.

More recently, Dr. ‘Bob’ Sears has been oft-quoted for his Potty Training Tips. Helpful signals of ‘readiness’ are offered, and he discusses practical issues such as potty chairs, diapers, and the like.

With autistic toddlers, however, there are physiological and psychological differences. Caregivers are challenged with a task that, at it’s core requires “readiness,” which is so difficult to determine. In addition to speech apraxia and other communication difficulties, important differences in ASD patients include:

  1. G-I motility – low tone and slower transit times can lead to poor gut health, bacterial or fungal imbalance, poor nutrient absorption, and abnormal stools.
  2. Increased pain threshold – affected patients can withhold longer, or they might not even sense fullness correctly.
  3. Gut inflammation from bacteria, viruses, yeast or food allergy often leads to unhealthy stools.
  4. Medications,including PPIs and esp Miralax®, may mask, set off, or worsen G-I disturbances.
  5. A restricted or junk-food diet may lead to vitamin and other nutritional deficiencies and disorders.
  6. As a child ages, self-esteem and anxiety often compound the issue and confound effective training.

An informal survey around the office yielded some interesting opinions. Karen, our kind practice administrator (and successful mother of 2), suggested that bribery worked best in her son with autism. Lisa, our compassionate bookkeeper (and successful mother of 4), added that having older male siblings helped her child the most. That, plus bribery.

Our budding in-house ABA therapist, Bianca, experienced success at a trusted local ABA facility. She observed that, in a group of manageable size, those requiring toilet training are subject to frequent lavatory visits of short duration. We all agreed that the ‘newspapers-on-the-ground-with-a-nude-kid’ trick might work, but it takes a lot of effort.

My version relies on the patients’ overactivity and preference for schedules. I suggest that the number of bathroom visits be determined by the number of BMs plus one. One-to-three times each day, for example, a child would be placed on the potty, pants down, for only 3 or 5 seconds, counted down clearly. Each day, that time can be increased until 30 seconds or so. If it takes 15 minutes, it is taking too long. Try bribery.

Ultimately, however, the single most important item to consider when faced with potty training a developmentally challenged child is a thorough, accurate evaluation and assessment of gastrointestinal integrity. If the gut is not healthy, the task may not only be unsuccessful, it could further influence many other behaviors, as well.

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!

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Brian D. Udell MD
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FL 33314
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