Our introduction to Leucovorin (high dose folinic acid) for her low folate levels was rocky and she reverted back to her very irritable self… the likes of which we had not seen in YEARS. Then I added Rx Levocarnitine (prescription generic Carnitor). We immediately saw positive things with the addition of LevoCarnitine. She calmed right down but she was no longer fatigued all the time. She stopped constantly yawning. She started to perform better in school. I was amazed.
The following year, in Sept 2015, Marley sat in this doctor’s office telling him that she feels “bouncy” in class. She had just started middle school and her biggest issue was having to sit through 45 minute periods. It was clearly an attention problem. He ordered our standard work-up and suggested that we double our levocarnitine dose. She was already on a quality B complex, so were supporting her mitochondria that way. I asked… “But, why do we want to increase her energy? She is already bouncy?” He said “We want to increase her brain’s energy to function.” And boy… was he ever right.
Interestingly, the Carnitine panel again showed completely normal… even after supplementing it for a year.
After doubling her dose of levocarnitine, she is now able to sit through class and focus on the task at hand. She is finishing my sentences for me. She is playing piano. She is getting all A’s and B’s in school.
Let’s let that last statement sink in…… This was a child that had SEVERE, nonverbal autism. She was completely detached and could not even function in an autism classroom. Now, she that she is being treated for her mitochondrial problems and her cerebral folate deficiency and is eating a dairy free diet with only whole foods and nothing processed, she is conversational, 100% mainstreamed in school and making A’s and B’s in the regular curriculum.
There are studies to support the use of levocarnitine for Autism SpectrumDisorders:
This study used 50mg/kg for three months and saw “significantly improved several clinical measurements of ASD severity”.
This study showed that with the addition L-ActylCarnitine ,“we observed of a stronger reduction of hyperactivity and improvement of social behavior in patients treated with LAC, compared with the placebo group.”
We use prescription levocarnitine but there are brands that are over the counter that are reliable as well, such as the NOW brand. Since L-Carnitine carries fat into the cell, it should be taken with a fatty food.
I think that it is important to realize that when the body goes through major changes (such as puberty), more ATP or energy is needed to fuel that transition. If the mitochondria are already impaired, the brain’s function will suffer and the child will lose focus. This is not an all or none type of situation. The mitochondria can be impaired without having full-on mitochondrial disease. We call this mitochondrial dysfunction. In kids with autism, we see this manifest in many ways including, but not limited to, seizures, Cerebral Folate Deficiency, inflammation, oxidative stress, impaired methylation, iron deficiencies, thyroid problems and so on.
It is really not much of a surprise that my daughter’s doctor identified her mitochondrial issues (even after other doctors had dismissed them) and sought to treat them to improve her quality of life. He co-published this study on Metabolic disorders and abnormalities associated with autism spectrum disorder in 2012 and has done much research on the subject.
Her pediatric neurologist saw her last week and was very pleased with her progress saying that Levocarnitine and Leucovorin are very safe, low risk supplements even at prescription strength, so he feels very comfortable with her protocol.
My hope is that when parents and doctors alike see issues of attention deficient disorder in their children and themselves, they will begin to look at the biochemical pathways and biomarkers for mitochondrial dysfunction to find the best and most effective way to treat this symptom of a larger problem.
This awesome paper was written by Dr Richard Kelly at Kennedy Krieger Institute.
Evaluation and Treatment with Autism and Mitochondrial Disease.
Here is the link where you can find MAPS certified doctors: