Some autism regimens are stalwarts that continue to demonstrate improvement (ABA). Some fade away – perhaps even to re-emerge (secretin?). Others hang around until more testing is documented (Memantine). Many can cause harm (Zoloft). A few are useful for specific purposes and so they continue to have a biomedical following. Naltrexone treatment falls in the last category.
The medication was approved in the 1990’s for addiction treatments including alcoholism, at a dosage range of 50+ milligrams per day. The thinking is that, if people don’t get high from alcohol and won’t suffer it’s absence, they won’t continue to drink. This is not the same chemical as Antabuse, which turns to formaldehyde and makes you SICK when you drink. Also, it shouldn’t be confused with the morphine antagonists Naloxone and nalorphine.
Nearly two decades ago, Italian researchers wrote, “There is a growing body of evidence that the immune and the central nervous systems interact and reciprocally influence each other… Taken together the assumptions that… the opioid system plays a crucial role in cognitive and immunological functions… and opioid peptides are present in excess in autism; then pharmacological reduction… by treatment with an opiate antagonist might counteract some of the behavioral and immunological disturbances observed in autistic individuals.” With a slightly different ‘low dose’ protocol, improvement was demonstrated “in a subpopulation of autistic children by chronic blockade of opioid receptors with a potent opioid antagonist, supporting the concept of an opioid-immune link in autism.”
In her 2006 report, Dr. Jaquelyn McCandless concluded, “As an effective, non-toxic, non-addicting, and inexpensive behavioral and immunomodulating intervention, LDN is joining our biomedical arsenal to help more and more children recover from autism as well as helping anyone with autoimmune diseases and cancer.” Her paper was entitled, “Low-Dose Naltrexone for Mood Regulation and Immunomodulation in ASD”. Sound like anyone you know?
Dr. McCandless’ protocol calls for specific timing (9-11PM) with a naltrexone-compounded cream (in the 1-1/2 to 4-1/2 mg. range) applied to a sleeping patient’s back or forearms. Once, a dad asked if he should also dance around the bed and chant. Funny guy. Which patients? What dose? What are the positive changes? The side effects? For individual patients, in order to achieve the goal of enhanced communication, doctors sometimes vary formulations, frequencies, and timing based on responses.
In my clinical experience, there is one type of autism that clearly disrupts by affecting the patient’s immune system. (How many other kinds of autism? is the subject of another explanation-post). Also, some oppositional behaviors, similar perhaps to an externally chemically-altered state, appear to benefit from this intervention. The major impediments preventing LDN from more common usage are:
1. It’s complicated and so requires parent education and resources.
2. After starting, the therapy requires tailoring to the patient’s responses and the family situation.
3. Patients don’t usually show immediate improvement, it may take up to 8 weeks.
4. Not infrequently, an apparent deterioration in behavior may occur in the early stages of treatment.
Of course, many biomedical interventions are subject to these same limitations.
That original naltrexone experience did prove significant and sustained improvement for a targeted, though small, population. For parents who wish to learn more about this subject, the Low Dose Naltrexone website is very informative and the Yahoo Group LDN is a great place to communicate with other users.
My discussion can be found here.
HI,are there any parents who have tried this,i am very interested in trying this.the moe i research the more promising it looks.
I have. My son is 4 months in on LDN and we see improvements every day. At first it was very slow and we didn’t really see changes. Now he is pointing and dragging us by the hand to things he wants. He’s non verbal so we’ve never seen these other ways of communication from him. It’s awesome. Better eye contact. He started hugging me (never happened before. He’s 8.
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LDN has changed my life and my daughter’s life. I have Asperger’s and my daughter has a diagnosis of moderate autism. Goodbye insomnia, and hello sleep. I had chronic pain from multiple health conditions. Goodbye to that too!
For my daughter, it improved her mood as well. She is 12 and *thanks* me regularly for LDN. How cute is that? Importantly, as a clinician, I am certain she has moved to a diagnosis of “high functioning autism”. This is supposed to be impossible. In 18 months, she has moved from all resource classes and failing state testing to “regular academic classes” and passing the state tests. Here’s the deal and a little about what we did: Many children with autism have underlying chronic infections or autoimmune conditions that are not easily detected (PANDAS, Lyme disease (which is *everywhere* contrary to popular belief), chronic unresolved viral infections). We use Beyond Balance antimicrobials (but there are other quality ones out there) because antibiotics harm the gut flora (already altered in those of us with ASD). Long use of pharmaceutical antifungals and antivirals is hard on the liver. Anyway … Starting with LDN made a huge difference for my daughter (who has all of the above conditions btw). Giving her a quality broccoli extract has drastically reduced meltdowns. Treating her partial seizure disorder reduced meltdowns and aggression as well (aggression is not an uncommon manifestation of pediatric epilepsy; 33%+ of people with ASD have a seizure disorder).
The other thing that comes with chronic infections and anything inflammatory or autoimmune (like autism, which causes brain inflammation) is vitamin and mineral deficiencies. Magnesium *RBC* is the right test to order for magnesium status and almost every American will come up with a deficiency – especially autistic or chronically ill individuals. In addition, 98% of all autistic people have some variant of the MTHFR gene mutation. This should be addressed not only because it opens up metabolic pathways in the individual that result in fewer symptoms, but also because it lowers heart disease and diabetes risk down the road. LDN was the beginning of our road to *remarkable* changes!!!
Hi Katie,
How long was your daughter on LDN before you started seeing results? What was the dosage and her weight?
I’m not sure that will be answered by this reader… usually 2-6 weeks for maximum benefit (or not)
BU
Dr. Udell,
I am following this and started my 11 year old on LDN. He’ son 1 mg compounded capsule given at 8 pm. It’s still affecting his sleep a little and his appetite (which is always huge; he’s on SCD, with some sweet potato lately here/there) is down and he’s a lot more picky. Does that subside?
thank you for all the info on your site, it really helps us parents!!!
Any unusual effects from LDN usually subside in the first weeks of treatment. If you are concerned, you can always stop for a week or so to ascertain if the naltrexone is the cause.
I am a primary care physician (MD) in Dublin and much to my surprise I see about 5-10 autistic patients per year. Most of them are brought here at about 4 or 5 and usually they come because they have no speech or have lost their speech.I do several blood and uriine tests, some of which I send to DHA lab in Illinois. I use LDN (www.lowdosenaltrexone.org) and methyl B12 injections on almost all of them as well as individualised doses of nutrients such as zinc, B6 ,magnesium, etc. Many of them start to speak after 3-6 months. Courses for doctors are arranged occasasionally in America and Australia by http://www.walshinstitute.org. If you have an autistic child get moving-there is hope for them but tiime is running out.
Dr. O’Flaherty,
Please don’t ever tell parents that time is running out. Our hope is the only thing that sustains us most days. Children still make significant gains as parents continue to do things to help them way past 5 years old. We “get moving” more than you can ever imagine. For many of us, It’s all we do.
I’ve been doing this a while, but for the new mommas, your comment could cause utter panic and they have enough stress. Please be kind to support and encourage, but please know that we feel the pressure of time and we need all of our hope. 🙂
What impact would this have on autistic adults? My daughter is 26 and was diagnosed with high functioning Aspergers at age 17. Diagnoses of narcolepsy/cataplexy were added when she was 23.
Worth a try
My son is also 26. Severe ‘autism’,sev OCD, severe tic disorder that prevents sleep… Diagnosed as tourette, but I suspect PANDAS or PANS. Had consult with a local functional med Dr. Yesterday! 3 month supply of LDN is on its way. I am guardedly optimistic, as I have tried so many promising treatments through the last couple of decades. Most recently 02 and FCT which seem to be helping. Hoping LDN is another piece to my sons puzzle.
Just wondering how your son has done on naltrexone. My daughter is also 26 now, with the severe behaviors, also with Down Syndrome. We just learned of this naltrexone 2 weeks ago. We saw immediate changes for the better. We are hopeful she will continue to be better.
My son also has very severely affected expressive as well as receptive language. He has no speech or understanding of speech since a tetanus shot at age 3
Questions to Dr Udell. Dose Range from How low to How High for a 2.7 years 14 Kg Girl? what are the milestones to say we need to increase or decrease the amount? for how long keep on trying that one step and then move to next ? Can we reduce if she is not well like more sleep, low energy? thanks
I don’t usually give personal advice in this forum. However, previously published dosages range from 1.5mg per day, as high as 6. I caution you that further counsel should involve a physician visit.
Dear Dr. Udell : I have a 13 years old son with autism and adhd. Do you treat children his age or is it too late. Thanks
It’s never too late to achieve optimal health and observe behavioral and social changes. It’s not false hope if it works.
Dear Dr. Udell,
I have a 9-year-old boy who has been diagnosed with borderline Aspberger’s syndrome. He makes good grades in school but has noticeable social problems–nothing harmful, but his behavior alienates his peers. Would low dose naltrexone help him? Is it worth a try?
Under the care of an experienced clinician, it’s worth a try.
Hi Dr. Udell,
We have started my 11 year old ASD boy on LDN 1.5 mg for the past two weeks. After the 3rd day saw a swelling on his lip and a boil on his nose. Then it went down. For a couple of days after that he used keep his fist clenched all the time. which was strange because he can’t usually make a fist. Then he had couple of days of bad stomach. Now he has mild pimple looking rashes on his back. Is the LDN clearing out the viruses and is this like a die off. I don’t know what to think about it. I have asked my Doctor but he has not yet replied.
thanks
Not sure how you administered the medication (cream, oral pill, liquid?), but it is one possibility. Of course, he could just have caught a virus coincidentally, but a new symptom 3 weeks into the course would be unusual. The fist clenching could be a new ‘stim’, ? related to LDN or not? Also, Molluscum Contagiousum can have this course (?related to starting LDN, which we have seen – it’s caused by a virus).
More importantly, try to stay with it for a few more weeks to see if you see improvement in behavior or communication.
Hi
Thank you for the reply. I have been giving it in the form of a pill, I got from the compounding Pharmacy. I give it to him in the night. I give it after 4 hours of eating, as they say it is best on empty stomach. Thank you for the advice. I will stay with the course and update. Just wanted to clarify.
Do you think LDN would interfere with PhosChol? I just started him on it. I have a high functioning child with ADHD and expressive and receptive language delays, plus anxiety age 10. Thank you.
Seems ok.
I just started my 12 year old Aspergers son on LDN. His main symptoms are social interaction issues, some repetitive movements/stim, and constant talking and repeating of stories (almost like perservative thoughts spoken out loud). He also has started to refuse school because he says it is too loud and too messy. He is now at home and already seems to be better – less stress.
I started him on .5 mg orally given at night – he is 73 lbs. Is this dose too low? Thank you.
I don’t recommend dosages for individual patients in this venue, but the published dose is 1.5 – 3mg. (depending on how it’s tolerated (sleep, agitation, etc.))
I have a 31 year old son who has been on MANY medications in his life, beginning at 3 1/2 years old. Our current Psychiatric Nurse Practitioner has him on 25 mg of Naltrexone and wants to increase to 50 mg. When I shared with her that everything I read is about using LDN (versus the full dose), she said the only thing Naltrexone does is antagonize opiods and that she has had good results with increased doses to help ASD patients. Our son is also taking Risperdone and we want to reduce and then eliminate that but she wants him to have zero aggresions or self abuse incidents for 6 – 8 weeks before she will begin reductions. She said increasing the Naltrexone will help with that goal.
Can you help me understand the reason why LDN is effective versus larger doses of regular Naltrexone? If LDN is the better way to treat, is there any documentation I can share with our NP?
I guess I didn’t explain it well in the blog? Low doses help the body’s endorphins to do the job.
I am curious what ever happened in your situation. My daughter is going through a similar situation, she is currently on 25 mg plus she is on Invega.
Omg. People don’t “recover” from autism and behavior is communication. If this gives us a slight barrier from the sensory overload that’s great, but the phrasing in this is so ableist, dehumanizing, and frankly uneducated about autism that it’s meaningless.
Also, actual autistic adults have been telling you for years ABA is abusive conversion therapy that results in masking and ptsd. This alone invalidates anything else you might say. We’re not freaks and we’re not sick. We’re wired differently. Look at the social model of disability, do some updating of your knowledge base, include autistic women and BIPOC in your studies, and do better.
All opinions are welcome.
For the 50,000 patients I have treated in a lifetime, and the 5000 individuals with complicated developmental challenges that I have assisted in the past 12 years…. It’s not false hope if it works.
With the right therapist, ABA is a Godsend. My autistic daughter thanked me for it. Please don’t throw out the baby with the bathwater. Many therapists work for the paycheck but there are excellent people who work to actually help people. It’s finding the right person that matters.
Autism is a brain condition just like bipolar and other things like that. There are treatments that help. Who wouldn’t want help? My son is begging for help. I understand that some want to be left alone and that’s fine but not everyone does. This is not a knock on people with autism. But not everyone is ok with living with it.
Can LDN be used if a child is on a prescription for medical marijuana?
I’m not sure there is any literature on that… They work on different systems (endocannabinoid-endorphin) and one might expect differing individual results.
We have not noted any negative effects from the small number of patients that may be taking both in our practice.
Hello Dr. Udell,
I love your work! I was diagnosed with autism recently at the age of 42. You have given me such hope. I’ve been reading all of your blogs, interviews, watched the LDN movie…and so many dots are connecting for me. I was crying hearing you talk about Copy Number Variations (I have a PhD in Applied Math). My dissertation was entitled “A comparison of Hidden Markov Model based programs for detection of copy number variation in array comparative genomic hybridization data.” My research looked at breast cancer datasets and algorithms to predict deletions/duplications. Hearing you on YouTube talk about genetic testing…was incredible!!!! I have recently found articles like “Connecting the dots: Overlaps between autism and cancer suggest possible common mechanisms regarding signaling pathways related to metabolic alterations”. My Mom, Dad, and Sister have all had cancer (and I think were also autistic). Mom & Sis died (BRCA1). Dad’s 80 and still quite autistic, but totally recovered from Prostate cancer (he was an Accountant..I thank Ben Affleck for helping me figure out that one. My Dad was literally an accountant. If we picked less stereotypical careers I would still be clueless). Anywho. I also have the Brca1 mutation. Due to my many surgeries, I don’t feel like I am going to die of Breast or Ovarian cancer. I have spent Forty Years of masking, abusing alcohol to deal with anxiety/socialize & freaking fluorescent lights!!!! Autism is killing me.
Then came the pandemic. 100% Telework was a miracle for me. All that extra time to watch HBO… I discovered Naltrexone from a documentary on Alcohol. And tried it. I couldn’t believe how well it worked to end my binge drinking. Pure Magic!!! I was reading the Sinclair Method book “The cure for Alcoholism” and wondering….is this also the cure for “Autism”? I couldn’t believe Naltrexone existed and I hadn’t heard about it for alcohol. I kept thinking…”What else don’t I know about?” I never would have guessed it would be Low Dose Naltrexone?????? I watched Jacob in the Documentary today. He gave me such hope. Praying for one more miracle! OR maybe 2! My LDN is in the mail.
Is there another Doctor like you that treats 43 year olds with Autism?
Thank you for all of your years of practice! Thank you for hope!
We have a 5 year old who is an enigma! He certainly displays signs of ASD & has been diagnosed as such but doesn’t seem to fit well with that (very good eye contact, no social interaction difficulties) but is non verbal (strangely his receptive language is strong, but expressive is very weak, almost as if he won’t attempt to speak vs not being able to!). Tried ABA & speech therapy and it has failed (he doesn’t respond to any kind of reward based repetitive reinforcement). Recently discovered that he has extraordinary math & language skills (except for the expressive above!). He is hyperactive but doesn’t display repetitive behavior much at all. All in all certainly some issues that suggest ASD, but confusing. Non verbal is a red flag, hyperactivity is a yellow flag. No GI or sensory overload issues (if anything hyperactivity & fidgetiness suggests seeking out sensory input vs overload). Would LDN be worth trying? Any GABA supplements to inhibit hyperactivity and slow him down? Anything at all to promote expressive language?
We have found this folinic acid protocol to be helpful, when other metabolic, gastrointestinal, and sensory issues are under control.
I have a 30 year old daughter with autism. She has pretty severe stimming. Do you think LDN could help? About how long would I see results? Can my nurse psychiatrist prescribe this and could I pick it up at a Walgreens?
It could help, yes. And, yes the NP could prescribe as it isn’t any high-risk medication and they will only provide a small amount.
You must get it filled at a compounding pharmacy.
Hi
My son has a primary diagnosis of adhd with autism traits. Hyperactivity is a real issue for us – can ldn help with adhd?
Yes. The immune system will be healthier and next day’s focus and attention improve.
Yes. The immune system will be healthier and next day’s focus and attention improve.
Yes. The immune system will be healthier and next day’s focus and attention improve.