As I have explained in previous blog posts, I find medical
research related to autism fascinating and spend a great deal of time reading
articles and books, hoping to find ways to help Alex. The Great Plains
Laboratory, which has run various tests on Alex to determine metabolic issues,
often points me in the right direction through their sharing of interesting
medical articles on their Facebook page. This week they posted links to two
articles that caught my attention because these research studies focused upon
vitamin B12 deficiency, something that I believe is linked to symptoms Alex
shows.
One of these articles, “B12 deficiency a concern for long-term care,” was published online this month on January 19, 2016, in Science Daily. [To read this article, please click here.] Reporting on a study done by the University of Waterloo, scientists discovered that people living in long-care homes in Ontario often tested as vitamin B12 deficient. Specifically, 14% had B12 deficiency at the time they were admitted to the facilities, and 38% showed only slightly better levels of B12. After a year, another 4% developed a B12 deficiency. However, those who took B12 supplements had better B12 levels. As this article notes, B12 deficiency can be prevented by taking supplements or eating foods such as meat, dairy, or fortified cereals.
However, as this article states, untreated B12 deficiency can lead to anemia and neurological issues, such as unsteady gait, and even paralysis. Moreover, low levels of B12 have been linked to osteoporosis, lethargy, and mental conditions, such as depression, dementia, and increased confusion. Perhaps physical and mental declines simply attributed to old age may have a nutritional cause––B12 deficiency. Consequently, the research team concluded that people living in long-term care facilities should have yearly blood tests to determine their B12 levels, especially since B12 deficiencies are quite treatable, which means serious consequences can be prevented.
In another article published online this month in Science Daily, studies show that people with autism and schizophrenia also have vitamin B12 deficiencies. This article entitled “Brain levels of vitamin B12 decrease with age and are prematurely low in people with autism and schizophrenia” summarizes research done by Dr. Richard Deth, professor of pharmacology at Nova Southeastern University. [To read this article, please click here.] After studying brain tissue from deceased donors who were otherwise healthy, his team found that children with autism under the age of ten had brain B12 levels three times lower than those of their typical peers. The levels of the children with autism were similar to healthy adults in their 50’s, which indicates that people with autism have a premature decrease in their levels of vitamin B12. Like the study in Ontario, they also discovered that B12 levels were lower in elderly people, which researchers attribute to normal aging.
This research also discovered that the brain levels of B12 were much different than those found in the blood, where B12 is typically tested. Dr. Deth also points out the significance of their findings, stating, “The large deficits of brain B12 from individuals with autism and schizophrenia could help explain why patients suffering from these disorders experience neurological and neuropsychiatric symptoms.” Consequently, he believes that further research needs to be done regarding treating these symptoms with antioxidants, such as glutathione, and methylcobalamin, a form of B12 that supports brain development.
These research studies on vitamin B12 hold special interest for me for various reasons. First, I began reading research about methylcobalamin injections being used for children with autism more than a dozen years ago. After the studies indicated no harmful effects and some positive results, I presented this information to Alex’s doctor, who agreed that trying this treatment was a good idea. After determining proper dosage levels, she prescribed twice a week subcutaneous injections of methylcobalamin, which we ordered from a compounding pharmacy. Her nurse trained me how to give the injections, and Alex was a trouper about the shots, never complaining when I gave them to him. After only a few weeks of these injections, Alex began to toilet independently for the first time in his life; he was nearly thirteen years old. This was an answer to years of prayers and wondering if he would ever be toilet trained. I truly believe that the B12 shots healed nerve damage so that he could finally feel the urge to go to the bathroom, and he has been able to stay clean and dry around the clock ever since then. Consequently, for us the healing from these B12 injections was miraculous. When his doctor retired, we were no longer able to continue this therapy, which subsequent doctors did not think was necessary any longer.
Prior to having his wisdom teeth removed under general anesthesia in November 2014, Alex had blood tests run to check his overall health. Although his psychiatric nurse practitioner also runs blood tests every six months to check his wellness, these were the first tests that indicated Alex is slightly anemic. His family practitioner at the time recommended that he take a low dose of iron supplement to see if this would help the anemia. When he was tested six months later, his levels had remained basically the same, so I asked her if we could try a few months of methylcobalamin injections, as we had done when he was younger. She agreed to a trial run of a few months of the shots; however, when we tested him again, we had to find another doctor because she left town for another job.
In December, we met with a new doctor and explained the interventions we had done with iron and the B12 shots to address the slight anemia. This doctor decided to stop both treatments, even though Alex’s levels had improved slightly, and to have Alex do some different testing in three months. One of the tests he is running is a B12 level, and we will be curious to see what those results show. Of course, if his blood levels are different from his brain, as Dr. Deth’s studies indicate, these tests may not be that useful. In the meantime, I have been giving Alex a B vitamin complex supplement, hoping to stave off any negative side effects from a potential B12 deficiency.
My main concern is that Alex has inherited pernicious anemia, an autoimmune condition in which the body lacks intrinsic factor, preventing the digestive system from properly absorbing vitamin B12. My father was diagnosed with pernicious anemia when he was in his 60’s, and his father and grandfather had pernicious anemia, as well. Although the condition is treatable with monthly B12 injections, my dad has lingering effects of the condition because it was not diagnosed soon enough. Namely, the vitamin B12 deficiency caused nerve damage in the form of peripheral neuropathy, or impaired sense of feeling in his hands and feet as well as impairing his sense of smell.
Armed with this new knowledge and research, I will be even more vigilant in pursuing the cause of Alex’s anemia with his new doctor because I do believe that B12 deficiency may be the cause. The good news is that this condition can easily be treated with supplements, but we want to prevent any further damage to his neurological system and potentially heal damage that may have already been done. As Alex’s mom/legal health care representative/advocate, I will keep praying for God’s healing and pursuing ways to make him better and healthier so that he can reach his full potential and enjoy life as a happy and healthy young man.
“O Lord my God, I cried to You for help, and You restored my health.” Psalm 30:2
One of these articles, “B12 deficiency a concern for long-term care,” was published online this month on January 19, 2016, in Science Daily. [To read this article, please click here.] Reporting on a study done by the University of Waterloo, scientists discovered that people living in long-care homes in Ontario often tested as vitamin B12 deficient. Specifically, 14% had B12 deficiency at the time they were admitted to the facilities, and 38% showed only slightly better levels of B12. After a year, another 4% developed a B12 deficiency. However, those who took B12 supplements had better B12 levels. As this article notes, B12 deficiency can be prevented by taking supplements or eating foods such as meat, dairy, or fortified cereals.
However, as this article states, untreated B12 deficiency can lead to anemia and neurological issues, such as unsteady gait, and even paralysis. Moreover, low levels of B12 have been linked to osteoporosis, lethargy, and mental conditions, such as depression, dementia, and increased confusion. Perhaps physical and mental declines simply attributed to old age may have a nutritional cause––B12 deficiency. Consequently, the research team concluded that people living in long-term care facilities should have yearly blood tests to determine their B12 levels, especially since B12 deficiencies are quite treatable, which means serious consequences can be prevented.
In another article published online this month in Science Daily, studies show that people with autism and schizophrenia also have vitamin B12 deficiencies. This article entitled “Brain levels of vitamin B12 decrease with age and are prematurely low in people with autism and schizophrenia” summarizes research done by Dr. Richard Deth, professor of pharmacology at Nova Southeastern University. [To read this article, please click here.] After studying brain tissue from deceased donors who were otherwise healthy, his team found that children with autism under the age of ten had brain B12 levels three times lower than those of their typical peers. The levels of the children with autism were similar to healthy adults in their 50’s, which indicates that people with autism have a premature decrease in their levels of vitamin B12. Like the study in Ontario, they also discovered that B12 levels were lower in elderly people, which researchers attribute to normal aging.
This research also discovered that the brain levels of B12 were much different than those found in the blood, where B12 is typically tested. Dr. Deth also points out the significance of their findings, stating, “The large deficits of brain B12 from individuals with autism and schizophrenia could help explain why patients suffering from these disorders experience neurological and neuropsychiatric symptoms.” Consequently, he believes that further research needs to be done regarding treating these symptoms with antioxidants, such as glutathione, and methylcobalamin, a form of B12 that supports brain development.
These research studies on vitamin B12 hold special interest for me for various reasons. First, I began reading research about methylcobalamin injections being used for children with autism more than a dozen years ago. After the studies indicated no harmful effects and some positive results, I presented this information to Alex’s doctor, who agreed that trying this treatment was a good idea. After determining proper dosage levels, she prescribed twice a week subcutaneous injections of methylcobalamin, which we ordered from a compounding pharmacy. Her nurse trained me how to give the injections, and Alex was a trouper about the shots, never complaining when I gave them to him. After only a few weeks of these injections, Alex began to toilet independently for the first time in his life; he was nearly thirteen years old. This was an answer to years of prayers and wondering if he would ever be toilet trained. I truly believe that the B12 shots healed nerve damage so that he could finally feel the urge to go to the bathroom, and he has been able to stay clean and dry around the clock ever since then. Consequently, for us the healing from these B12 injections was miraculous. When his doctor retired, we were no longer able to continue this therapy, which subsequent doctors did not think was necessary any longer.
Prior to having his wisdom teeth removed under general anesthesia in November 2014, Alex had blood tests run to check his overall health. Although his psychiatric nurse practitioner also runs blood tests every six months to check his wellness, these were the first tests that indicated Alex is slightly anemic. His family practitioner at the time recommended that he take a low dose of iron supplement to see if this would help the anemia. When he was tested six months later, his levels had remained basically the same, so I asked her if we could try a few months of methylcobalamin injections, as we had done when he was younger. She agreed to a trial run of a few months of the shots; however, when we tested him again, we had to find another doctor because she left town for another job.
In December, we met with a new doctor and explained the interventions we had done with iron and the B12 shots to address the slight anemia. This doctor decided to stop both treatments, even though Alex’s levels had improved slightly, and to have Alex do some different testing in three months. One of the tests he is running is a B12 level, and we will be curious to see what those results show. Of course, if his blood levels are different from his brain, as Dr. Deth’s studies indicate, these tests may not be that useful. In the meantime, I have been giving Alex a B vitamin complex supplement, hoping to stave off any negative side effects from a potential B12 deficiency.
My main concern is that Alex has inherited pernicious anemia, an autoimmune condition in which the body lacks intrinsic factor, preventing the digestive system from properly absorbing vitamin B12. My father was diagnosed with pernicious anemia when he was in his 60’s, and his father and grandfather had pernicious anemia, as well. Although the condition is treatable with monthly B12 injections, my dad has lingering effects of the condition because it was not diagnosed soon enough. Namely, the vitamin B12 deficiency caused nerve damage in the form of peripheral neuropathy, or impaired sense of feeling in his hands and feet as well as impairing his sense of smell.
Armed with this new knowledge and research, I will be even more vigilant in pursuing the cause of Alex’s anemia with his new doctor because I do believe that B12 deficiency may be the cause. The good news is that this condition can easily be treated with supplements, but we want to prevent any further damage to his neurological system and potentially heal damage that may have already been done. As Alex’s mom/legal health care representative/advocate, I will keep praying for God’s healing and pursuing ways to make him better and healthier so that he can reach his full potential and enjoy life as a happy and healthy young man.
“O Lord my God, I cried to You for help, and You restored my health.” Psalm 30:2
5 comments:
Thank you so much for writing this blog! I have been reading your blog for a while now and it gives me a lot of hope.- Just a quick recommendation on the B12 level: If it comes back normal, but in the lower range of normal, I would consider asking to check the methylmalonic acid level. B12 levels in the blood often are normal in light of tissue B12 deficiency. MMA builds up in the blood because B12 is needed to metabolize it. So, if the MMA is high, that is a sign of B12 deficiency. B12 levels in the blood are kept normal at the expense of intracellular levels, which can go on for a long time before blood B12 falls below normal. Symptoms begin when the cells/the tissues are experiencing low B12 even if blood levels are still normal. I used to see it all the time. Omeprazole and other proton pump inhibitors can also cause vitamin B12 deficiency. There is a urine methylmalonic test that can be done. We ordered the test kit about a year ago for my daughter because she does not tolerate blood draws. In her case, the MMA was normal.
Thank you for all the additional information about B12 that you shared; I was not aware of the MMA connection and appreciate your insights! We will keep all of this in mind when we have Alex tested next month. I hope your daughter is doing well--please keep me posted on how things are going.
Take care,
Pam
Great blog. I had the privilege of interviewing Dr. Deth about his research on methyl-B12 in the brain as well as other areas of his research. Admittedly the focus of the interview is on this dysfunction in autism. The audio of the interview is available here: https://soundcloud.com/seth-bittker/autism-research-connections-4
Dear Seth,
Thank you for the compliment and for sharing information about methyl-B12. I find this research fascinating.
Take care,
Pam
A deficiency of B vitamins may be seen in anemia, often indicated by a low red blood count. Vitamin D levels can be measured by a simple blood test. Often, simply trying safe levels of a vitamin to see if health improves may be a good indicator that the body is lacking in vitamins. Of course, I'm not a medical professional, just an autism mom who has done a lot of research, so I'd recommend that you find a health care provider who can guide you as to what supplements might be helpful.
Take care,
Pam
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