I recently returned from a trip to California where I attended the annual National TACA (Talk About Curing Autism) conference. Fully booked days and evenings kept me busy and filled my notebook with lots of tips from a variety of speakers on the topic of treating autism. Getting them down on paper helps me remember what I learned and I also get the added benefit of sharing those tips with you.
So, let’s get to it! Here are my personal take-aways from the National TACA conference.
Seizures and Autism
Dr. Frye spoke on seizures in Autism. It became abundantly clear that this is an area that is ignored and goes unnoticed and unaddressed. The shocking truth is that up to 35% of kids with ASD (Autism Spectrum Disorder) have seizures and up to 80% of them have abnormal EEGs. Every child diagnosed with Autism should be given a 24-48 hour EEG.
Abnormal EEGS affect speech: This study showed that 91% of kids with abnormal EEGs had a speech or language disorder.
Sometimes, seizures only occur during sleep and manifest as language regression and autistic-like behaviors. These are only seen in an overnight EEG.
There is evidence to show that treating kids with Valproic Acid or Lamotrigine (Lamictal) that only had epileptiform discharges but no seizures helps with autistic-like behaviors.
See the study on Valproic Acid and autism here.
See the study on Lamotrigine and behavioral issues here.
Studies show that the most effective non-traditional way to treat seizures is the ketogenic diet. In fact, in many cases, it can be more effective than medication. Many parents are using a ketogenic diet to control seizures.
Learn more about ketogenic diet here.
Important to note is that rescue medicines are critical for seizures over 5 minutes long yet only half of parents that have kids with a seizure disorder have them. Talk to your doctor about seizure rescue meds if your child suffers from seizures.
Folate and B12 Deficiency in Autism
This topic is one of my favorites as it is what helped my daughter so much.
Greater than 1 out of 2 ASD patients will respond to folate and methyl B12 therapy. That is AMAZING data.
In fact, giving therapeutic doses of Folinic acid (never folic acid) or Leucovorin and methyl B12 for only 3 months is equivalent to 177 hours of speech therapy Now that is a HUGE finding!
At Recovering Kids, we have a file dedicated to Cerebral Folate Deficiency. You can find more information there or read about it here.
Mitochondrial Dysfunction in Autism
Treating mitochondrial dysfunction in Autism can be life-changing
Do you have that kid that slumps when he sits?
Drags his feet when he walks?
Runs out of energy early?
Maybe gaining weight is an issue?
Guess what? You need ENERGY for all those things plus cognition and GI motility, etc.
A simple mito cocktail at the correct doses may be the answer to helping these issues.
A mitochondrial cocktail is a collection of supplements given at higher doses to support the mitochondria and thus functioning of the cells.
Here is the list of supplements in a mito cocktail from the study listed above.
The biggest mitochondrial supplements for autism tend to be CoQ10 (or Ubiquinol), L-Carnitine (or prescription LevoCarnitine) and using folate and B12 as mentioned above.
Does your child have Thyroid problems?
A study just released this year, shows that a thyroid disorder in kids with autism can be associated with folate receptor autoantibodies. This is an autoimmune disorder where the body blocks the amount the folate getting into the brain.
Immune Dysfunction in Autism and how LDI
(Low Dose Immunotherapy) may help
LDI can help with kids that struggle with PANS or PANDAS or immunological issues and works on the theory of molecular mimicry. We can stop trying to kill the bug and start modulating the immune response with LDI.
So what is LDI?
Low dose Immunotherapy alleviates the immune response to microbes such as viruses and bacteria. It is similar to homeopathy but homeopathy is “like treats like”, where LDI is “like treats same”. The doses are stronger with LDI than with homeopathy yet much lower than with allergy shots or even SLIT (sublingual Immunotherapy). They are simply water-like drops to be placed under the tongue.
I could appreciate it when Darin Ingels, ND said; we need to understand that detox alone will NOT stop autoimmunity. He said, “By improving immune tolerance to these antigens, we can break the inflammatory cycle that causes many patient’s symptoms.”
PANS and PANDAS
This is a big topic and was discussed by Dr. Usman. Dr. Usman said that she is seeing more and more kids coming in with PANS and PANDAS flares. She said the numbers are increasing in her practice. Everyone needs to be aware of what PANS and PANDAS look like because they are TREATABLE. Both neurotypical kids and kids with Autism can get PANS or PANDAS.
For more basic information on PANS and PANDAS, you can see here.
As is shown in the link above, PANS and PANDAS are recognized by the National Institute of Mental Health. Unfortunately, many pediatricians still have a hard time recognizing it.
What is happening when you see PANS/PANDAS?
PANS happens when the microglia in the brain become inflamed and this causes extreme excitation. Th17, which is an inflammatory cytokine is released and causes the break down of the blood brain barrier.
When this happens, calcium enters the cells rapidly causing inflammation. This is why they say that giving calcium during a PANS flare is like pouring gasoline on a fire. DO NOT GIVE CALCIUM during a flare.
Testing and Symptoms
Many people run a Cunningham panel during a flare to check for PANS markers. Elevated CAM Kinase is a marker. The “C” in CAM Kinase stands for calcium. Do not give more of it. Dr. Usman believes that elevated CAM Kinase tends to be more easily treated than other elevations.
If you see elevated D1, that usually means you will see OCD. If you have elevated D2, you may see tics. Work on modulating the immune system to stabilize those.
If you have a child that is preseverating on a memory or a thought, that usually indicates excess glutamate. Remove foods high in glutamate. Magnesium, lithium orotate and L-Theanine all help calm down glutamate.
Two biggest symptoms seen with PANS or PANDAS are OCD and/or Eating restrictions.
Peak onset age is usually 6.5 years old and the ratio of boys to girls affected is 2:1.
Dr. Usman said that 99% of her patients have a problem with their zinc : copper ratio. Remember that the ratio should be 1:1. The ratio is much more important than the actual numbers. Here is a video of Dr Usman explaining this phenomenon.
She said that she likes the Failsafe diet for kids with PANS and PANDAS. It is low in dopamine and low in histamine.
If you have a child that does better on antibiotics, then most of the time, you are either dealing with Strep or Lyme. If strep is a trigger for your child, keep rapid Strep tests in your house. You can buy them at Walgreens.
PANS is a spectrum just like ASD, but in her practice, she has found that kids that get tics are the worst. The more they flare, the more they are going to flare. Also, siblings of kids with Autism are at a high risk for developing PANS or PANDAS. (This has been the case in my family.)
SNPs and how they matter
SNPs are single nucleotide polymorphisms. You get one allele from each parent.
These alleles can be either (+) or ( – )
If they are both (-), then you are negative for the polymorphism.
If you have one (+) and one (-), then you are heterozygeous for that polymorphism.
If they are both (+), then you are homozygeous for that polymorphism.
If you have run your child’s SNPs, look at COMT and MAO A.
PANS kids tend to have COMT ++ and MAO A + which means they have elevated dopamine and serotonin as they have a harder time detoxifying these excess neurotransmitters.
If there is COMT++, then do not use curcumin to reduce inflammation.
Instead, use Bosweilla, Slipperly Elm and Resveratrol or other options.
Dr. Usman has had success with the Respen A patch with kids that are COMT++ and MAO A + since it is calming and helps with calcium regulation.
PANS / PANDAS Flare Protocol
Lastly, Dr. Usman gave her PANS flare protocol that she uses with her patients:
Ibuprofen 10mg/kg 3x/day with food for 7-10 days
Benadryl 10 – 25mg at bedtime
Vitamin A 200,000 units for 2 days.
* Vitamin A can be toxic at high doses, so if you see a dirty looking neck or the child gets a headache, then no Vitamin A the next day.*
SURAMIN for Autism by Dr. Naviaux
This was such a hopeful presentation. Dr. Naviaux brought most parents to tears with his presentation of the recently released results of the first ever clinical trial of an antipurinergic drug that addresses the Cell Danger response in kids with autism. It was a small clinical trial of only one dose of Suramin in five boys, but the results were nothing short of remarkable. Two of the boys in the trial were non-verbal and began to speak in phrases. All boys that received the suramin showed improvement. None of the boys that received the placebo showed improvement.
Funding remains the largest obstacle and at Recovering Kids, we have been asked where parents can donate to his work. Here is a link that will direct you there.
I only covered six topics here and there was were so many other speakers and topics ranging from beginning biomedical treatment to IEPs, Special needs trusts and self-care.
I always come home exhausted but so full of knowledge and usable information that I feel like I can conquer the world. Well, okay, maybe not conquer the world but at least I have some new things to test for and try.
And most of all, I know I am not alone. There are other parents out there just like me who are looking for answers. There is HOPE.
Lovely post…I’d suspected pans / pandas in my kid bcos she shows very mild ocd every now and then but I hadn’t known that limited food eating was also a symptom…wow something to discuss with maps…thanks for all the info.
Thank you so much for putting this in very easy to understand language.