There’s a lot I’d like to post about today but we didn’t sleep very well and my brain is a little foggy. (That explains my broccoli style banana phone graphic. I just had to.)
Gavin is at ABA therapy as I type this – it’s day 3. He is doing well and very happy to be there. Yesterday he ate lunch with them and I hope he will eat today as well. Then we are off to speech therapy, then home for a nap. I hope he has enough energy for all of this today! We’ll see.
Since I am not very spunky today, I managed to do only one thing so far in my constant world of research and that thing was: sulforaphane. I finally responded to a team member at Nutramax, the makers of Avmacol. They replied back to my initial email weeks ago but one thing led to another and I didn’t reply or order the supplement. Today I ordered two bottles of Avmacol and updated them, explaining how I really hope it works for us. The person already emailed me and told me to let him know how it goes. I am so floored by the fast response that I am not even sure what to say. It all seems too good to be true. Avmacol is supposed to be the best way to get sulforaphane working in the body and the people who work there seem to be pretty amazing people so far.
So about Avmacol: it’s a combination of sulforaphane and myrosinase which “ignites” the benefits of sulforaphane right there in the digestive system. I gave Gavin some other sulforaphane supplements before, but not on a regular basis, so I don’t know what the outcome was. But then I kept reading about it and decided that if I do this again I’d make sure to get the best formulation of sulforaphane possible. That’s when I heard about Avmacol and the way it is different than other supplements out there of the same type. It’s even the chosen tablet for clinical trials for sulforaphane.
I’ll update this post after we have been taking it for at least four weeks. The two bottles will arrive soon so hopefully I will see positive changes in Gavin shortly after his fourth birthday.
I’m leaving some details about two clinical trials with sulforaphane below, in case someone stumbles across this post and wants more details right away. There was a study completed in 2014 which showed positive outcomes in males with autism who were over 13. The second study I found is apparently still going on and I have emailed the researchers to ask if they can pass any info along to me to share with you. It’s another trial that doesn’t involve anyone younger than 13, but I hope it sheds some light on the benefits so that more people can use it successfully.
Sulforaphane Clinical Study 1 – Lurie Center for Autism 2014
This study was conducted at the Lurie Center for Autism of the Massachusetts General Hospital (MGH) for Children with approval of the MGH and Johns Hopkins University Institutional Review Boards, and was registered at ClinicalTrials.gov (NCT 01474993 under Food and Drug Administration IND 113542).
“The decision to test sulforaphane to treat ASD was based on four premises. First, extensive evidence shows that sulforaphane counteracts many of the same biochemical and molecular abnormalities associated with ASD, including oxidative stress and reduced antioxidant capacity, defects in glutathione synthesis, mitochondrial dysfunction and low oxidative phosphorylation, increased lipid peroxidation, and neuroinflammation. Although it is unclear whether these anomalies are etiological or secondary manifestations, their correction often improves ASD behavior
Second, a variety of small molecules including sulforaphane can ameliorate a number of unrelated genetic disorders by activating the “stress proteome,” which regulates many of the aforementioned damaging processes. Sulforaphane, as well as hydroxyurea, phenylbutyrate, and trichostatin A, have been shown in vitro to have therapeutic potential to reestablish cellular homeostasis in a number of unrelated genetic disorders.
Third, sulforaphane is a dietary phytochemical, derived from its precursor glucosinolate glucoraphanin, that is widely consumed in cruciferous plant-rich diets, and qualifies for consideration as a food, a dietary supplement, or a drug, depending on its intended use. Sulforaphane is therefore justifiably considered to be of low toxicity, and its administration to humans is well tolerated.
Fourth, widespread anecdotal reports have suggested that fever can dramatically but temporarily ameliorate the disturbed behavior of many autistic patients. Notably, the degree of improvement (mostly in stereotypic behavior and inappropriate speech) was unrelated to the severity of fever or of autism. This study explicitly suggested that elucidation of the fever response might provide insight into the mechanisms of ASD and point to new therapeutic approaches. Fever up-regulates heat-shock proteins and related mechanisms central to multiple cellular processes in the CNS, including synaptic transmission, and may improve long-range cerebral cortical connectivity that is depressed in ASD. Sulforaphane also up-regulates expression of the heat-shock response.
Participants, all male, were 13–27 y old at enrollment (median: 17 y). A history of behavioral improvements with fever was given by a large majority (32 of 40; 80%) of participants.
At 18 wk there was a 34% reduction in ABC and a 17% reduction in SRS scores,
Significantly greater improvement was observed among participants randomized to sulforaphane at 4, 10, and 18 wk for irritability, lethargy, stereotypy, and hyperactivity subscales of the ABC, and in awareness, communication, motivation, and mannerism subscales of SRS. After stopping sulforaphane treatment, both ABC and SRS subscores tended to revert toward baseline.
Our clinical impressions during the study, although blind to group assignment, were that 13 of the 40 participants improved noticeably with respect to sociability and behavior, usually observable by 4 wk; all were receiving sulforaphane. In queries to families and caregivers, before unblinding, 17 of 26 whose sons had taken sulforaphane reported gradual changes within the first month of treatment and correctly surmised their group assignment, whereas the remaining 9 on sulforaphane—and all but 1 of 14 who received placebo—were not improved, and believed that their sons had not received sulforaphane. Positive responses to sulforaphane were spontaneously reported by parents and caretakers, who commented (before disclosure of treatment category) on improved social responsiveness, behavioral compliance, and calmness in the subjects with ASD who were taking the active compound.”
Sulforaphane Clinical Study 2 -Carolina Institute for Developmental Disabilities, University of North Carolina School of Medicine
A second study from 2017 and still ongoing with Avmacol brand of sulforaphane: https://clinicaltrials.gov/ct2/show/NCT02909959
I am going to try to get information about this trial to see the results. From the link above, it shows the way they will measure the outcomes but I don’t see any results just yet.