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"The Doctors Are In" - 5/3/12

On Thursday May 3rd Autism Speaks Head of Medical Research Joe Horrigan, MD, was joined by Robert L. Hendren, DO, director of child/adolescent psychiatry at the University of California, San Francisco and an expert on nutritional and complementary interventions for autism.

2:57
  Hi - this is Dr. Horrigan - we re just setting things up -it will be just a couple of minutes - my web connection is a bit slow at the moment.... 
 
 
2:58
  Dr. Hendren is just logging on...it might be another couple of minutes...
 
2:59
  Hello, everyone. Thank you so much for joining us. We have a special guest host this week. 

Dr. Robert Hendren, D.O., is professor of psychiatry and behavioral science, director of child and adolescent psychiatry and vice chair of the department of psychiatry at the University of California, San Francisco. 

From 2001-2009, he was executive director and chair at the University of California, Davis M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders). From 2007 to 2009, Dr. Hendren was president of the American Academy of Child and Adolescent Psychiatry. 

Dr. Hendren’s current areas of research are translational clinical pharmacology and nutritional trials using biomarkers (MRI, measures of inflammation, oxidative stress, immune function and pharmacogenomics) in neurodevelopmental disorders. 

Dr. Hendren is also member of Autism Speaks Treatment Advisory Board and the recipient of multiple Autism Speaks research grants for his investigation of nutritional interventions in the treatment of autism. 

Dr. Hendren is joining our regular co-host child/adolescent psychiatrist Joe Horrigan, MD, head of medical research here at Autism Speaks. 

Chief Science Officer Geri Dawson, PhD, is attending the Alexandria Summit on neuroscience today. She’ll be back co-hosting next month. Meanwhile, Dr. Dawon reminds those joining us that registration is now open for Autism Speaks first National Conference for Families and Professionals, Aug 3 and 4 in Columbus, Ohio. More information here:http://www.autismspeaks.org/science/science-news/autism-speaks-national-conference-families-and-professionals. 

 
3:00
  Hello, everyone. I’m pleased to be joining you today and hope I can answer many of your questions. 

When I started as executive director of the University of California, Davis, MIND Institute, the founding parents directed me to “leave no stone unturned” about what might be a successful cause or treatment for autism. Do good science; but keep an open mind! 

I have approached what is sometimes called complementary and alternative medicine, biomedical treatments, and DAN! treatments with this openness of mind. It is informed by the principle of “what is the evidence for the science behind the mechanism and/or the treatment results.” 

I am not a specialist in administering these treatments, but I have studied the evidence for the mechanisms behind them and am doing randomized clinical trials for several of them. Some hold promise for a select group of people with autism. Some have little evidence to back up either their mechanism or their treatment success. My replies today will be more about the evidence than it will be about how to do other than the treatments with the most evidence for their safety and success in treating autism. 

 
3:02
  Advance question from Sarah 
My daughter was recently diagnosed with Chronic Pain and she’s ASD, poor social skills, communication skills, early development delays. My question is this:- How would you measure and score an Autistic childs constant pain? Would you have concerns that pain could become obsessional in some cases in an ASD patient, for example if the pain was there once, they can still feel it? 
 
3:03
  Sarah – this is Dr. Horrigan. You are correct in that assessing pain in an individual with impaired expressive abilities can be quite challenging. The assessing clinician needs to keep the language simple and do a good physical exam. There are classic physical findings (e.g. classic trigger points) for things like fibromyalgia that don’t require the patient to use language in response to the physical examination. Typically, the assessing clinician just needs to be savvy in putting together all of the available information (medical history, physical exam findings, findings from EMG if done, etc) , when trying to determine if pain is an underlying driver of behavior in an individual with impaired expressive abilities. If there is a family history of chronic pain conditions, or lower pain thresholds in general, that can be very helpful as an altered pain threshold is probably familial. A lot of times medicines like gabapentin (e.g. at night), pregabalin and serotonin/norepinephrine reuptake inhibitors (e.g. duloxetine, and venlafaxine) are tried empirically to see if they are helpful, in instances like what you have described. Sometimes they are. If they are used, it is often necessary to start with a rather low dose and then progressively adjust the dose upwards, under a physician’s care.
 
3:05
 
Comment From Anshu

Doctor I have heard that recovery is impossible after the age of 8. even though my son has been in therapy for past 5 years his progress has been slow. I want to try Biomedical treatment now. Are there any places in Houston I can Visit ?

 
3:06
  Dear Anshu, 
I don't think autism is every hopeless and sometimes people make progress in waves. So, keep trying to find treatments that work for your child. 
The Johnson Center in Austin is a reputable thoughtful place that does Biomedical Treatments. I am not aware of anyone in Houston but a good doctor there for autism is Alice Mao, MD at Baylor.
 
3:08
  Advance question from Pam 
My son suffers non stop constipation. He has been on miralax since he was 4 and he is 14. What do you do when you can’t change your child’s diet? What do you do when every doctor you take him to says, change his diet and give him miralax? I know what he should eat, but he refuses. When you pull the food he doesn’t eat at all. 
 
3:09
  Pam – this is Dr. Horrigan. A critical thing to remember about Miralax is that anyone who takes it needs to drink the right amount of water or fluid so that it works properly . Otherwise it can worsen constipation. Also, if your son is chronically constipated, with infrequent bowel movements, the chronic constipation will diminish his appetite. His stomach and abdomen may be uncomfortable, just about all of the time, as a consequence, and again, this will exacerbate the cycle that you described. It depends on what is found on his physical exam, but he may need a flat plate x-ray of his abdomen to determine if he is obstipated (fully stopped up), to help determine if he needs a more formal medical intervention to clear his bowels out (e.g. enemas and beyond). Clearing out his bowels may also help him to recover the smooth muscle function of his bowels – a pediatric gastroenterologist will be an important part of his care if this route is necessary.
 
3:13
  Pam - I would add to Dr. Horrigans response that you might use probiotics and digestive enzymes if you have not tried these already. If that approach does not work, then it is time to see the GI specialist or find a new one. 
Dr. Hendren
 
3:13
 
Comment From Andres

i read that there is more similarly in schizofrenia and aspergers then orther illness ,how does this help in treating aspergers?

 
3:14
  Andres - this is Dr. Horrigan - a short answer is that individuals with ASD, including Asperger's, recruit more parts of the brain to perform a given function relative to individuals without ASD. There are some subtle similarities between ASD and schizophrenia, in terms of neuroanatomy (e.g. diminished neuroplasticity, inlvolving cortical circuits primarily), but the disorders are definitely not the same.That said, social skills training can be universally helpful, as can well-executed neurofeedback, although the protocols are somewhat different
 
3:17
 
Comment From april Pimentel

My name is April I have a 5 year old daughter with lots of medical issues .. She was diagnosed at 2 with Autism do believe that there may be a link with GERD and Motility issues with Autism she is know having lung and immune issues plus muscle and joint issues and just under went her third Fundo. Is there any clinical trials that may be just right for her ?

 
3:18
  April - this is Dr. Horrigan - it will be important to know your daughter's formal diagnosis - has an immunologist or rhematologist seen her and offered a diagnois that integrates the various medical issues that your daughter has been suffering from (e.g. does she have an explicit autoimmune disorder, or has she had a formal genetics evaluation)? This will help us to direct you to potential clinical trials. By the way, the site that I use all the time to look at what is going on, in terms of clinical trials is: www.clinicaltrials.gov
 
3:21
 
Comment From jill

Will you be sharing more about your recent clinical trials? When can we hope to see some exciting news about effective treatments?

 
3:21
  Dear Jill, 
We have found positive results from injectibel methyl B12 for some but not all kids. We have one publication in the Journal of Alternative and Compllimentary Medicine. We are continuing this study with funding from Autism Speaks. We also have a study with omega-3 that we have published suggesting a positive trend and we are continuing that too. There is a study of a pancreatic digestive enzyme, one with Namenda, and we are just starting one with high does vitamin D and we are hopeful about these but don't have definitive results.
 
3:22
 
Comment From Chris

My son has Asperger's Syndrome and we have tried multiple methods to help him in school but to no avail. His grades suffer and administration and I are at a loss. He is a Junior in High School and may not graduate next year. We have not done anything with his eating habits as of yet. Is it possible his diet is affecting his ability to focus?

 
3:22
  Chris - this is Dr. Horrigan - the short answer is "yes" - it would be important to keep a food diary and to see what correlations there are to your son's behavior and cognitive performance. Sometimes it is as simple as food colors that can cause or perhaps worsen ADHD-likesymptoms.Also, a highly limited diet that is associated with hpoglycemia will definitely cause cognitive and behavioral symptoms. You may need to work with a dietician to explore techniques to enhance your son's palate.
 
3:24
 
Comment From Pocomom

My daughter is nearly 7, diagnosed with PDD-NOS and has had sleeping issues since infancy, mainly with falling asleep and staying asleep. She now is developing anxieties around the darkness of her room and is using other typical stall tactics to avoid sleeping. I am trying to make sure her environment and other things are aiding in getting her to relax, but I am wondering about the safety of melatonin or homeopathic sleep aids as an occasional help.

 
3:24
  Dear Pocomom, 
There have been several good studies of melatonin for sleep in children with developmental disorders at doses from 2 to 9 mg. It is safe - if the dose is too high your child may seem foggy during the day. Melatonin helps the most for falling asleep. Sometimes valerian root can help with staying asleep.
 
3:26
 
Comment From Liz

My son has sensory issues. He holds his ears with his hands in a crowded area or loud noises. Have tried headphones however he does not like to wear them, any suggestions on how to help him?

 
3:28
  Hi Liz - this is Dr. Horrigan - my first thought was that a lot of the auditory interventions used by OT specialists might help, in terms of sensory desensitization strategies. Sometimes they try to miniturize the ear buds and implement an iPod or MP3 player, playing a subtle background track (e.g. classical music with deeper frequencies, at just thr right volume, determined by trial-and-error). The OT and/or speech therapist may also be helpful in flagging the exact frequencies that are most noxious to your son (e.g. flouresecnt light hum frequencies?) and this can help you both in terms of minimizing exposure to these more-nasty frequencies
 
3:29
 
Comment From Amy

I've had my son tested for allergies to gluten and dairy allergies. The tests came back negative. Does this mean removing gluten and dairy from his diet are not worth trying?

 
3:29
  Dear Amy, 
This is Dr. Hendren 
There is a lot of controversey about the CF/GF diet and who it works for. Some say it is not necessary unless the testing is positive. Some say it may work even for people without GI issues. But it takes a lot of work and the whole family may need to participate. For motived families, I suggest giving it a try for at least 3 months using a good nutritionist and pecanbread.com. If there are GI issues then I am more positive about the trial even though the studies have not been uniformily positive.
 
3:31
 
Comment From april Pimentel

Thanks, they are troubled there is no actual diagnosis she has been suffering GERD and motility since a baby and this November everything went downhill.. We just learned about everything else. She had genetic and dna testing as a baby and everything was normal.

 
3:31
  Dear April, 
This is Dr. Hendren 
There have been some good studies from Tim Buie MD at Harvard about GERD and kids with ASD. Some suggest a trial of an acid blocker and there has been one mildly positive trial with Pepcid.
 
3:32
 
Comment From Ric

Hi, I am a therapist with many kids with autism but two of them have a history of unexplained bone fractures. They have been tested for bone density and the results have been good. Do you have any ideas of what else should be checked as the possible cause for these fractures? Could they be related to autism? One of them is ambulatory and the others is not.

 
3:33
  Ric - this is Dr. Horrigan - it's tough to say what might be underlying this problem, if the bone density was normal - the calcium levels were normal too? It would be good to know more about the context of the fractures and whether they have been witnessed by third parties.I state this because there are different types of fractures that occur in kids and I could answer the question differnty knowing the context and the radiological findings associated with the actual fractures. That said, there is no explicit relationship that i am aware of between fracture proclivity and autism.
 
3:35
 
Comment From Guest

Hi Dr., My son is 3 1/2 years old and non verbal, I just started working with a DAN Dr in February and We just started Methyl B12 injections 30 days ago. He had a very very limited vocabulary when we began (5-7) words and refused to sign he would only scream and pull on us. In the past 30 days his vocabulary has grown to almost 20 words. He started popping words out almost instantly, he just changed overnight! He is even using the sign language we were so desperately trying to get him to use before!! We are thrilled!! I had been reading about Methyl B12 for almost two years and was sure it was going to be exactly what he needed, however I was shocked that it happened almost instantly!! My question is this? What is your experience with Methyl B12 as far as seeing such dramatic results so quickly?? Secondly, I am wanting to increase the dosage?? Is there a recommended dosage?? We are currently giving him 25 mg/mL every third day.

 
3:35
  Hi 
This is Dr. Hendren. 
We have studied about 90 kids in our double blind B12 trials both at the MIND Institute and here at UCSF. We see very positive reponses in 35 to 40% and milder responses in more than half. Some don't have and 30% of the time there is a placebo response. We have had dramatically good results in 4 or 5 kids that have made everyone a believer but it does not work for everyone.
 
3:38
 
Comment From toni

Should melitonin be used everyday or as needed?

 
3:40
  Hi Toni - this is Dr. Horrigan - melatonin can be used either as needed or on a nightly basis. It is always good to use the lowest effective dose, and to try to seek out a pharmacetical-grade product (Natrol is one xample, but there are others, too). Sometimes, ironically, a lower dose is more effective if you administer it a bit earlier (e.g. 0.5 mg of melatonin at 6 PM can sometimes be just as effective as 3 mg at 8 or 9 PM). It has to do with the natural daily rhythm of melatonin levels in the body/brain, and where in the cycle you catch it). It is good to avoid giving melatonin earler than 5 PM, however, and definitely avoid giving melatonin between 2 AM and 5 PM...unless you are dealing with different time zones and jet lag or something similar....
 
3:40
 
Comment From Pokamon

Is there a chemical in the brain that ppl with austism lack ,that the rest who dont have austism have?

 
3:40
  Dear Pokamon, 
Dr. Hendren here. 
Seems people with ASD hav high and low serotonin. The low serotonin can get worse in early adolescence and cause people with autism to get more moody, irritable and have difficulty sleeping. Sometimes SSRIs can help. Some people think giving 5-HTP can help but there is no published evidence that it is
 
3:44
  Advance question from Cathy 
My son is 6 and a half, has ADHD, Asperger’s, behavioral and other issues (OCD, ODD, anxiety, meltdowns, constipation) and is on Adderall XR 15 mg, Adderall 30 mg, Intuniv 3 mg, and 2 new pills for anxiety and sleeping (I forget what they are) that his neurologist put him on. I’ve just changed over his diet to gluten free as his blood test came back (gliadin levels at 38) with a low probability of celiac disease. He has not had the bowel biopsy yet. His dad (we’re divorced) has not dealt yet with the food change yet but doesn’t believe our son has all these issues. My problem is that he’s fighting me on wanting to switch him over to gluten free because he doesn’t think he needs all the meds (he feels some don’t even work – yet I’ve seen change) and feels I’m poisoning him because of all the meds and taking foods he loves away from him for gluten free!! 
To give his dad peace of mind, would it be beneficial to have the bowel biopsy done and either rule in or out celiac disease or just continue for the gluten free diet to see if behaviors and meltdowns subside? How long will it take before I see any significant changes in his behavior? 
 
3:45
  Cathy – this is Dr. Horrigan – you are right in that the benefits of an elimination diet will be difficult to determine, if your son is intermittently eating foods with gluten (in this instance). And gluten is in all sorts of foods, sometimes in a less-than-obvious manner. Here is the link to the Autism Speaks blog on this topic from last November: http://blog.autismspeaks.org/2011/11/11/how-helpful-is-the-casein-gluten-free-diet/ In terms of timing of benefits, if you are able to fastidiously implement an elimination diet, you could see benefits within a week, sometimes even sooner of the individual is very symptomatic (e.g. abdominal pain, diarrhea can get better quicker, if celiac disease is the actual diagnosis – here is a link to info on celiac disease from the Mayo Clinic :http://www.mayoclinic.com/health/celiac-disease/DS00319 ). On a different note, the medication regimen that you described may need to be re-evaluated – I suspect that the benefits of the Adderall may have waned as time has gone on (prompting a few increases in the dose?) – he may need an alternate stimulant, as least for a little while, to see if he can get a better effect (benefit) on less number of milligrams of stimulant (relative milligrams, that is), and if not, he can return to the Adderall but often you might see that he does sufficiently well on less milligrams after even a week (or less) on an alternate stimulant. Just an idea…
 
3:46
 
Comment From Jenna

I did not notice the name box before!! Thank you for your reply regarding the Methyl B12~ we are mind boggled NO ONE can believe how much he has improved in 30 days! Do you think increasing the dose is a good thing or not?? Of course I want more, I'm finally getting my little boy out!

 
3:46
  Hi Jenna, 
This is Dr. Hendren 
I don't know the dose your son is on. We give 75mcg/kg. 
Some people do better when folinic acid is added to the MB 12...some don't
 
3:46
 
Comment From Andy

I have twin boys age 22. Both have autism. (moderate) Do you think any of the clinical treatments "might" help adults or just children?

 
3:49
  Dear Andy - this is Dr. Horrigan - behavioral treatment, administered by a highly competent therapist, can definitely be effective across the lifespan. In addition, medicines can be effective for individuals with ASD, across the lifespan. Especially if there is a co-occurring psychiatric disorder (like a co-occurring anxiety disorder) that comes into the picture and contributes to suffering. An example would be an SSRI if there is a genuine panic disorder present. One of the exciting things about the recent reserach inlvolving new medicines for ASD is that they may be quite effective across the lifespan - I am thinking about the recent adult animal model studies (e.g. involving mGluR 5 modulators) that showed a big beneficial effect in these adult animal models - we are hoping that will be replicated in the ongoing clinical trials involving adults with Fragile X and autism. We should have some important results on this new class of medicines within the next 12 months (check out www.clinicaltrials.gov, and use "autism" and/or "Fragile X" to get an idea of the scope of clinical trial activity that is ongoing)
 
3:51
  Dear ctimd, 
This is Dr. Hendren, 
About 30% of people with autism develop seizures often in adolescence. I am not aware of any anticonvulsant that works better but have seen Depakote used a lot. One neurologist feels it helps with neurodevelopment and may help reverse the or at least prevent the progression of the seizure disorder.
 
3:51
 
Comment From ctlmd

Ric. Have either of the patients been treated for seizures with antiepileptic drugs? Some patients with autism also have seizures, and some of the antiepileptic drugs affect bone health.

 
3:51
 
Comment From ctlmd

I am an epileptologist, and I have a few patients who have both epilepsy and autism. Are there particular antiepileptic drugs that work best in such patients in your experience?

 
3:52
  oops. Answer to ctlmd above
 
3:54
 
Comment From Ric

To answer ctlmd. Neither of these two patients suffer from epilepsy.

 
3:57
 
Comment From Julie

My son is currently 21, diagnosed with Asperger's Syndrome, with co morbid disorders of anxiety and depression. He has learned that taking his depression meds makes him feel better. Finally! So many times we as parents have wished there was a handbook on what to expect with our son, is there any new findings on Asperger's?? Can Asperger's run in families?

 
3:57
  Hi Julie, 
This is Dr. Hendren 
There is a growing literature on people with ASD as they progress into young adulthood but this is a very understudied area. For those with Aspergers in this age range, there is increasing focus on life skills, vocational training, and social skills training. There was a recent study suggesting that adults with ASD may do well on SSRIs. 
Asperger's can run in families.
 
3:58
 
Comment From Tiffany

My son is 21 months old and was diagnosed with PDD-NOS at 18 months. Eating is a huge issue. My son is not a big eater, and still wants to take a bottle. He would much rather eat a bottle than a full meal. He also has major constipation issues. I really want to get him off the bottle, but my family is telling me I am rushing it. Is he still being on the bottle causing him harm? I worry that if he doesn't have the bottle, he will hardly eat anything and not get enough nutrition.

 
4:00
  Hi Tiffany - this is Dr. Horrigan - do you have a dietician already involved? In my opinion, your strategy is okay, in that I sense that you are trying to progressively introduce new foods, especially ones that have some decent fiber, and you are doing what you need to do to assure that your son is taking in suffcient calories. It would be good to know if he has any other associated g-i symptoms like recurent but low-grade diarrhea, in which case you may need to determine if the constipation is indicative of something more substantial (e.g. obstipation, or maybe even a food intolerance) that would require a more aggressive diagnostic approach. A pediatric gastroenterologist may be helpful in this regard. A key theme will be to make sure that he is getting enough fiber (and accompanying fluids) in his diet, regardless of how the calories are delivered..
 
4:03
 
Comment From Jen

I have a 4 year old with Aspergers who has frequent melt downs that are becoming more intense. Her BHRS has not been able to manage them and advise thinking about meds. I'd rather see if there were a medical reason and explore enzyme levels, diet, etc. There isn't a DAN doctor in my area. Are there any tests that a ped can order to determine if we need to do gluten/casein-free, or look at low oxylate, silicylate diets? I don't have a lot of support on this one so I need to know there is a reason before switching her diet over.

 
4:03
  Dear Jen, 
Dr. Hendren here. 
You might look at the Autism Research Institute website for good information about the studies you mention. That site can tell you alot about the biomedical experts (formally DAN! doctors), where to find them and what they do. As I said before, testing may help point to the diet but some say it is of benefit even if the testing is negative.
 
4:05
 
Comment From Carol

My 12 yro ASD son has an aversion to using the bathroom for bowel movements. He tells me that it's not "normal" to use the bathroom, even though he sees his brothers use the toilet correctly. What can i do to help him understand that he can't continue to do what he does? Thank you for your time.

 
4:07
  Dear Carol - this is Dr. Horrigan - the first thought that came to mind is that i would want to speak with your son a bit, to get a better understanding of what is on his mind, what is behind his concerns. For example, does he have 'contamination' fears - if 'yes - that would bring me down a partcular path (e.g. systematic desensitization, adapted for an individual with ASD, perhaps even accompanied by a careful trial of an SSRI), or is it a matter of hypersensivity (e.g. g-i pain) or perhaps just an idiosyncratic belief (in which case I might take a altogether different approch to that, as well, adapting some cognitive-behavioral techniques)
 
4:08
  Thanks so much for joining us. So sorry that we’re not able to get to all your questions. 

Please join us again on the first Thursday of next month – June 7th at 3 pm ET/noon PT. You can send advance questions to ScienceChat@autismspeaks.org

Meanwhile, we’ll leave you with the following information on our upcoming national conference for families… 

Registration Open for Autism Speaks National Conference for Families and Professionals Aug. 3-4 in Columbus, OH 

Register now for Autism Speaks inaugural National Conference for Families and Professionals, Treating the Whole Person with Autism: Providing Comprehensive Care for Children and Adolescents with ASD, August 3 and 4, 2012, in Columbus, Ohio. 

This two-day conference provides families and clinical professionals an overview of latest findings in autism research and treatment on health-related issues and the integration of care. Early bird conference registration pricing ends May 31st. 

For more information please visit 
www.autismspeaks.org/2012nationalconference