Methylation topic- Brian
Hi Brian, I answered your last question that was part of another thread, but for more info on the methylation subject, here's a link http://www.cnsspectrums.com/aspx/articledetail.aspx?articleid=2591 Methylated spirits/ Stephen Stahl
You may have already seen this article, but just in case... What I gleened most out of this article was that having an adequate pool of neurotransmitters was key to having the meds function with manipulating them. Tracing that backwards, it takes the raw materials and synergy of all the organs to produce that pool.
What's been very curious about my son's journey, is that we saw a deterioration (in terms of emotion, mood and sleep) pretty early, with increasing issues around 18 m. By 3 it had escalated to where we sought medical intervention, and questioned, "when do we hospitalize?", though we somehow did manage at home. It was the inconsistencies in his behavior that kept me from seeing that inpatient would discover a 'why?' any more than I would. Anyhow, beginning at that point, we found meds that worked, though it took a rather aggressive approach to get stability. Later, as you've read, Levi was transitioned to nutritional therapies and supplements, and attained an enduring degree of stability than he did on meds. Currently, he's on minimal nutritional support- limited diet restrictions, but no exclusive eliminations, and minimal multimineral/vitamin support. The decrease in nutritional therapy began last spring, and so far there's been no significant change. All the while, it's been the same kid, the same genes. Person-wise, there's been many variations. I'm relieved the 'feral' one is extinquished, and we're seeing as Jistac notes, constant diligence and pressure turns carbon into diamonds (at this point, I'm satisfied with 'uncut'). So, it makes me wonder. I was told this was a 'for life' illness. Obviously, things changed that he's been med free now as long as he was on meds, and still doing well. But he's remained well without the dietary/nutritional supports as well, which makes me conclude that for the most part he is getting what he needs from his normal food, that finally, he is properly (at least adequately) absorbing and metabolizing what his body needs. But why is that enough now when it's not that different than before? All I can come up with is that his chronic illness began with and was escalated by nutrient depletion, which could have a myriad of reasons, from altered gene expression, environmental toxins or viral exposure, to who knows what. I don't see his illness being all that different than what's experienced during the aging process, where lowered cell replication accuracy drops, lowers cell efficiency in enzyme production and energy transfer. It's like a set of conditions triggered and staged an early induced aging mechanism, but more damaging coinciding with the most active and demanding period of cell replication and synaptic growth. And prior to accruing the tools to navigate socially, there's no norms to recognize or fall-back on. Imagine the energy required when basically starting out with a starved brain and forced to catch up or fail. In terms of depletion, it would make sense that meds helped interim, in that they are designed to target mechanisms, but they still rely on having an adequate pool (noted in Stahl's article) on which to act. When meds 'poop out', it's possibly due to the supply not being sufficient enough to gain effects from the meds, and not the med's fault. As we used supps to restore levels, the meds were too enabled, so we lowered them. As adequate nutrient levels were obtained, we didn't need med assistance. Just like when I thought it would always take meds to keep things in check, I also expected needing continual diet/supp support, as least to a degree greater than what we're doing. What in essence I think we did was restore the body's ability to recycle it's proteins and neurotransmitters and get out of that 'depleted cycle'.
...A long story to get to how the methylation cycle is pivotal to conserving and processing the neurotransmitters, DNA, RNA, mtDNA, antioxidants.... Healing his gut was also an important piece, not only to utilize what came in, but non-functioning, it was a liability and drain on the rest of the organs, including the function of the brain. We did a strict gfcf during that part of his recovery to minimize what insults we could (tests showed he was not processing those proteins, spilling rather than using them). They didn't raise major flags when we did allergy testing, so as long as we aren't seeing deterioration from ingesting them now, we use limited amounts, as they help maintain the diversity of nutrients (as well as adds to a perceived quality of life). Just wanted to further explain where we've been to where we are. You can see on the other response there were a lot of interventions to reset things.
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Darryl - parent volunteer, dad to
Levi, 13, stable using supps and diet exclusively since June 07. Previously treated and stable with med combo inc. lithium, 900mg seroquel, and small amounts of risperdal, luvox and focalin after being dx'd at age 3 1/2.
Hi Darryl, I want to say to you and your wife. I love you. This post brought tears to my eyes. You have mentioned things that I have yet found but my gut has told me are possible. If you every come to NY. Please let me know I would love to chat with you. I in the early stages of this BP journey becuase I believed doctors when they told me at 2, 3 and 4 years that he was still in his terrible two's. By 6 years old I had my son committed to a psych hospital to only realize that they were not helping him but druging him.
Luckily we were only on Risperdal. That did the trick until I was able to find True Hope. However, as much as I love them. My gut tells me there is another big component that I am missing. Yes, I know the diet and sugar but, you mentioned the methylation. I am not very familiar with this but learning. I asked his CAM psych doctors to run this test along with the IgG testing and they feel it is not necessary and too costly and it may prove anything. How else can I get these test done? You mentioned some test showed Levi (love the name) was processing the proteins but spilling rather than using them. WHat test determined this? and is it possible to check other major minerals that are not being absorbed by Hudson's body.
The Empowers are working, he is a better kid but I would say 60-70% not fully there. We still see many signs of the BP, meaness, obnoxious, rudeness come through more than we would like. But, thank GOD the anger is not always there.
I have a million and one questions. Would love to get in touch with you off line if that is possible. You can reach me at willowjms@gmail.com
Thanks for sharing your story
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Willow - Mom as sane as I can be
Hudson, 10 BP on Empower since Oct 2010, Omegabrite, Probiotics, 1000mg calcium,
Daughter 14 - Regular Moody Teenager- Great sibling
I was going to Doctorsdata to find the gliadin/casein test, and saw this : http://www.doctorsdata.com/methylation.pdf one of the authors is Amy Yasko, a phd who has developed a CAM protocol used on children with autism. Looks like she included her diagrams, which help sort things out.
Didn't find it there... it's a greatplains lab test: http://www.greatplainslaboratory.com/home/eng/peptide.asp
You can do a search of 'spectracell' on the CAM forum- there are several discussions about it. If you contact them, they may be able to advise you on if it'd be covered or not by your insurance, and where you could do it. We used Genova Diagnostics Optimal Nutritional Evaluation, seems to me that ran in the 400 range. http://www.gdx.net/product/10003 this is an online lab: http://www.integrativepsychiatry.net/genova_diagnostics_optimal_nutrition_evaluation.html
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Darryl - parent volunteer, dad to
Levi, 12, stable using supps and diet exclusively since June 07. Previously treated and stable with med combo inc. lithium, 900mg seroquel, and small amounts of risperdal, luvox and focalin after being dx'd at age 3 1/2.
The True hope AminoPower Plus label has:
Vitamin B
6(as pyridoxine 5-phosphate) 3 mg/4 capsules
The Pyroxine 5-phosphate is the active form of B-6 should be required for the methylation cycle to function. While I don't think carnitine is a methyl donor, it is a necessary product of methylation.
EMPower Plus also just lists Folic Acid.
I just now called True hope about the folic acid ands asked if it was the methylated form. They said it was "definitely folic acid". To me it seems odd that it is not the methylated form, but that is what it is.
Brian
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Daughter 7 BP/violent rages. Unsuccessful with multiple meds. Now almost 100% stable (Since before Christmas) on 0.5 mg Risperidone and going lower + Restrictive diet + EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium + melatonin + inositol
Son (5) Normal
Wife (CathyK now also on TBMF) BP, on same diet and supplements & reducing meds.