monstermama Posted November 10, 2015 Share Posted November 10, 2015 My DS who just turned 3 has been in speech therapy for a year, and while he's made amazing progress, he's still pretty far behind. He's also currently being assessed by the school district for autism. A lot of parents from the speech delay/autism groups I belong to have been singing the praises of B12 (specifically methylcobalamin). I've tried researching it online but I'm having problems separating out good resources from bad. I intend to bring it up with his pediatrician at his next appointment, but I'm curious if any of you had heard of this or tried it with your kids. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted November 10, 2015 Share Posted November 10, 2015 My little one was in a research study at UC San Francisco on methyl B12 shots. I couldn't find the results on PubMed so I don't think they have been published yet, but they are cited in this article by the study's lead researcher: http://journalofethics.ama-assn.org/2015/04/sect1-1504.html According to what Dr. Hendren told me at the end of my daughter's participation was that they were seeing 1/3 of participants getting strong improvement, 1/3 getting no improvement, and 1/3 getting either slight improvement or mixed results (good improvement but also major side effects). My daughter saw an acceleration of the rate of her improvement while taking the shots. Unfortunately, we switched health insurance at the end of 2013 and the shots were no longer covered. They were too expensive to pay out-of-pocket for given our budget, especially since we were starting ABA and going to have $20/day co-pays for that. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted November 10, 2015 Share Posted November 10, 2015 One relatively inexpensive and easily available treatment that we saw major improvement with is Foodscience of VT's Behavior Balance DMG. http://www.swansonvitamins.com/foodscience-of-vermont-behavior-balance-dmg-12-fl-oz-liquid If your child responds positively to DMG, that is an indication that there probably is a methylation issue and is likely to see a benefit from mB12 shots. 1 Quote Link to comment Share on other sites More sharing options...
monstermama Posted November 10, 2015 Author Share Posted November 10, 2015 Thank you so much! I'd been eyeing the m-B12 revitapops, but that liquid looks like a much more cost effective way of trying this out. Do you recall about how long it took for you to see results in your daughter? Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted November 10, 2015 Share Posted November 10, 2015 I haven't been giving this daily because of my own scatterbrained-ness lately, but I feel like I see a difference when I give dd B-Healthy from Emerald Laboratories. It's a B complex that includes the methyl form of B12. I really have to remember to give it to her tomorrow because she's been giving me grief for the last week. Quote Link to comment Share on other sites More sharing options...
Princess Ariel Posted November 10, 2015 Share Posted November 10, 2015 This caught my eye as my Lyme disease specialist, a MD, has me taking this. She recommended a cherry flavored chewable. So far I get it at Walgreen's. I take 5 tablets of 5000mcg/a day. The only thing I don't like is that it contains sucralose. Other than that it is pleasant tasting, easy to take, a child might like it. Quote Link to comment Share on other sites More sharing options...
Hypatia. Posted November 10, 2015 Share Posted November 10, 2015 I take methylated B-12 (I have the MTHFR mutation), however I haven't tried it with my kids. My 5 year old with speech issues takes fish oil, but I haven't looked into B-12. Quote Link to comment Share on other sites More sharing options...
Pen Posted November 10, 2015 Share Posted November 10, 2015 A mother of a child I knew who had had what was considered to be autism and who had recovered to reasonably normal (I know some people consider autism to be incurable and thus by definition would consider that whatever the child had could not have been autism or the child would not have improved) credited a number of things they did, one of them being B12 which was given in more than one form, partly depending on the age and location of the child. She had B12 lollipops for at school, with special permission to suck them in class against usual school rules. At home my understanding is that they used liquid or sublinguals once she was old enough for sublinguals. My ds and I use sublingual methylcobalamin sometimes, which I think is generally helpful (maybe more for me than him), but it could be a placebo effect (which other than that it is somewhat expensive is fine with me if something helps even if it is a placebo effect it still helps). It is also not the only supplement we have tried or use, and thus hard to say for sure what causes what. My impression is that Jarrow methylcobalamin sublingual works best, but it may be that it just tastes best. :) Quote Link to comment Share on other sites More sharing options...
wapiti Posted November 10, 2015 Share Posted November 10, 2015 My ds is compound heterozygous for MTHFR. We've tried various combinations of sublingual methylcobalamin, hydroxycobalamin, and 5-MTHF, to no avail. I prefer the B-complex by Thorne (small fraction of a capsule - like an eighth - really helps when he is feeling foggy) though there's a bit more niacin than I'd like so just yesterday our lyme doc recommended Methyl Guard, also by Thorne. We'll see. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted November 10, 2015 Share Posted November 10, 2015 Thank you so much! I'd been eyeing the m-B12 revitapops, but that liquid looks like a much more cost effective way of trying this out. Do you recall about how long it took for you to see results in your daughter? Oral mB12 is not very bioavailable. The most effective form is injections (requires a prescription), followed by the nasal spray (OTC). Quote Link to comment Share on other sites More sharing options...
Lecka Posted November 10, 2015 Share Posted November 10, 2015 I am just going to mention, I am also a mother of a child who has autism, and we have not chosen to try any biomedical approaches so far. They are definitely one direction to go in, but there is nothing you "have" to do just b/c some people think it is good, it is popular, it has worked for other people, etc. You are very free to try things that make sense for your situation, and pass on other things. My son is just a very, very healthy kid. I know kids who are just not so healthy, who are not glowing with health. Or, who have sleeping problems. Or who have signs of allergies. Etc. It is just not my son. He has always been a good sleeper (once he falls asleep), a good eater (though within his preferences, he eats a balanced diet), had regular digestion, etc. He has not had signs of untreated pain since he has been diagnosed (in retrospect I think he had some untreated "silent" ear infections before he got tubes in his ears, poor kid). It is not easy to make these choices, but you can do it! I really hope there are not any underlying medical issues, but I do think it is worth looking into, and it is worth it to try things that seem like they are likely to help. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 10, 2015 Share Posted November 10, 2015 I find that magnesium and other good quality supplements have helped me function and think better, and good supplements keep my asthma in check (esp. fish oil). I may have undiagnosed celiac disease (not eating gluten again to find out), so YMMV. I have not explored anything about various forms because I have not been tested for MTHFR at this point. I think I would try something that is quality regardless of form and then go from there to see what helps since you don't have a medical reason at this point to use a specific formulation. I think researching is wise in case you do find specific things that make a certain form the best for your son. But I would not knock myself out looking for "just right" until you know what the need is. Just my two cents. We mostly take Shaklee supplements, and the kids' vitamins are Nordic Naturals. My son who is on the spectrum is like Lecka's in that he is healthy as a horse (and he is one of the least picky eaters I have ever met). I do see some help in behavior with fish oil, but it's not exactly cut and dry or a big change. I wish you well in looking for things that could potentially help. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted November 10, 2015 Share Posted November 10, 2015 Just because a child may appear healthy on the surface does NOT mean there aren't biomedical issues going on. Each of us has to make his/her own decision about biomedical treatments, but many nutritional supplements have a good safety profile and research has shown them to be effective in at least a subset of children with ASD. See: http://www.autism.com/adams_summary For me personally, as long as the risk to trying something is minimal, I would rather give it a shot to see whether it helps. Some things we've tried have helped quite a bit (DMG, acetyl-l-carnitine, coenzyme Q10) while others have done nothing. The low-phenol diet actually made the hyperactivity worse but fortunately the symptoms stopped as soon as we resumed her normal diet. YMMV Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 11, 2015 Share Posted November 11, 2015 Just because a child may appear healthy on the surface does NOT mean there aren't biomedical issues going on. Each of us has to make his/her own decision about biomedical treatments, but many nutritional supplements have a good safety profile and research has shown them to be effective in at least a subset of children with ASD. See: http://www.autism.com/adams_summary For me personally, as long as the risk to trying something is minimal, I would rather give it a shot to see whether it helps. Some things we've tried have helped quite a bit (DMG, acetyl-l-carnitine, coenzyme Q10) while others have done nothing. The low-phenol diet actually made the hyperactivity worse but fortunately the symptoms stopped as soon as we resumed her normal diet. YMMV It has been my perception that some of the specialized supplements are expensive. I just suggested she might want a baseline or a place to start with "regular" supplements (regular B-12, etc.) before spending a lot of money. I don't mean to suggest that people do not benefit from specific types of supplements. I've gotten the impression that many people here have had some of the MTHFR testing and such before trying specific types. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted November 11, 2015 Share Posted November 11, 2015 It has been my perception that some of the specialized supplements are expensive. I just suggested she might want a baseline or a place to start with "regular" supplements (regular B-12, etc.) before spending a lot of money. I don't mean to suggest that people do not benefit from specific types of supplements. I've gotten the impression that many people here have had some of the MTHFR testing and such before trying specific types. I have a friend with the mutation and had a child born with a neural tube defect. I didn't get the impression her doctor advises her to take specialized vitamins. She does take B6, 12, and folic acid. All of her other babies have been healthy. Another friend's entire family is seeing an APN and she recommended specialized B's after testing for MTHFR. I think it could go either way, perhaps depending on the persons ability to absorb and their metabolism. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted November 11, 2015 Share Posted November 11, 2015 It has been my perception that some of the specialized supplements are expensive. I just suggested she might want a baseline or a place to start with "regular" supplements (regular B-12, etc.) before spending a lot of money. I don't mean to suggest that people do not benefit from specific types of supplements. I've gotten the impression that many people here have had some of the MTHFR testing and such before trying specific types. Genetic testing such as Dr. Amy Yasko's methylation profile is far more expensive than doing a trial of most supplements. I could buy 4 months' worth of mB12 shots for the same price and that's one of the most expensive things we've tried. 1 Quote Link to comment Share on other sites More sharing options...
wapiti Posted November 11, 2015 Share Posted November 11, 2015 FWIW, for low-budget genetic testing, I can recommend 23andme.com ($99 anonymous spit test). I would then run the results through http://geneticgenie.org (free) for some methylation and detox information and https://promethease.com ($5) for other info. My ds's original MTHFR testing was through Labcorp though the polymorphism did show up through the 23andme data also. (At the moment, we have much bigger fish to fry - we just discovered an immune deficiency) 1 Quote Link to comment Share on other sites More sharing options...
nature girl Posted November 11, 2015 Share Posted November 11, 2015 Wapiti, does promethease charge only $5 for a full list of genetic differences of all types? Or do you have to pay separately for an analysis of each suspected issue? Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 11, 2015 Share Posted November 11, 2015 Genetic testing such as Dr. Amy Yasko's methylation profile is far more expensive than doing a trial of most supplements. I could buy 4 months' worth of mB12 shots for the same price and that's one of the most expensive things we've tried. That makes sense. Quote Link to comment Share on other sites More sharing options...
wapiti Posted November 11, 2015 Share Posted November 11, 2015 Wapiti, does promethease charge only $5 for a full list of genetic differences of all types? Or do you have to pay separately for an analysis of each suspected issue? There's a full report for the $5 though it's a lot of info to sort through (e.g. you have 7x the normal odds of male pattern baldness! You have 1.5 times the normal odds for disease X! You have 1.5 times the normal odds to not have disease X! Some of the genes are contradictory, naturally). I did it last April, so I don't know whether anything has changed. I forgot to mention http://www.heartfixer.com/IndexHF.htm where there is more info about how to handle various polymorphisms and mutations. Beyond that, what to do is unclear in a few cases (e.g. my ds has the VDR taq mutation that affects the vitamin D receptors but supplementing is not necessarily recommended). Apparently it's possible to pay a fee (maybe $30?) to the guy who runs that site for specific supplement recommendations though I have not done so. Our naturopathic lyme doc recommended this site. 1 Quote Link to comment Share on other sites More sharing options...
nature girl Posted November 11, 2015 Share Posted November 11, 2015 This is fascinating. But yeah, looking through the list and explanation of some of the things they test for makes me wonder whether you'd end up learning anything useful, or just more confused (and paranoid) than you were before getting the results... Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted November 11, 2015 Share Posted November 11, 2015 People considering 23andme testing should be aware of the fact that the data is not kept confidential but sold. 1 Quote Link to comment Share on other sites More sharing options...
wapiti Posted November 11, 2015 Share Posted November 11, 2015 FWIW, there is an option to opt into or out of a pool of results - I can't remember more details. While it does require payment with a credit card, it's easy to register the person's dna being tested as anonymous, Mickey Mouse, whatever identifier you choose. I did not use my ds's actual name. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.