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Methly B-12 shots and our experience

Posted Mar 11 2009 12:00am
So, when our journey to recovery began, I kept coming across this term, methylation. At the time, it was just a word that I kept seeing but didn't know how to pronounce. My oh My how educated you become while actively persuing a recovery from autism. Your friends and family too (or at least the ones who care to truly listen and be open minded). The common denominator with this "methylation" word was B-12 shots and their potential ability to help with speech and language.

From my early research, they seemed to be the magic pill. I wanted those B-12 shots so that my son would speak. They seemed to be working mircales all over the place. I figured they must cost at least $500 a shot but who cares if my baby will talk! Unfortunately, the more you research something that you think is wonderful, you usually find something negative. Of course, in my research, I did find those whose children did not respond to B-12 injections, or who became hyper and didn't sleep, or ended up with high levels of cobalt in their system. Everytime I'd come across something like that, I'd just blink my eyes as if to delete the screen so that my brain wouldn't soak in the negative...only positive.

Dr. James Neubrander, a well respected DAN! doctor, was the first to discover the potential gains in autism using Methyl B-12 injections. I encourage anyone thinking or debating them to visit his website for tons of information, recovery stories, "how to" instructions, etc. I learned quite a bit from studying up on Dr. Neubrander and the other DAN! doctors who followed his protocol. For many children with autism, the lack of communication is one of the biggest hurdles. So, anything that might possibly be a magic pill for language was going to be my main focus.

We were seeing a local DAN! doctor and requested the MB-12 shots but were, surprisingly, afraid to start using them. First, who wants to stick a needle in their child's backside? NOT ME! (that's why I insist hubby do it) We finally were at a place in Drew's progress where we thought we should begin. You'll learn from Dr. Neubrander that it is best to not start any other new treatment while beginning the shots so that you may better document any changes (good or bad) that result from them. We failed. Not with using the B-12 shots but with sticking to no new changes. Instead, we were instructed by Drew's doctor to switch anti-fungals around the same time. This DID slow down the progress of the B-12 shots. Drew had a bad reaction to the anti-fungal switch and took about two weeks to heal. So, his positive results from B-12 were ultimately delayed. Never fear, the magic pill was still here!

I had read reports of children who began speaking just days after their first injections or those who within 2 weeks spoke in sentences. Oh, how I prayed to be that parent! We were not. However, slowly, very slowly, we began seeing small results/changes in Drew. Dr. Neubrander says that the gains start off like a tree: they start by growing slow but then once they take off, they take off fast. Drew's changes started off small but good. Big grins, constant eye contact, engagement for longer than say 30 seconds, initiation of joint attention, and finally, sounds. Not just the typical, "eeehh", or throaty "mmm" but real consonant sounds. Dada, Mum, Hi, they were BACK! It had been eight months since we had heard many of those sounds. His little voice, so sweet, yet so different from what I thought was his voice. The throaty sounds are not his voice, they are his stims. He IS in there. Seriously, I cannot describe the sound of that little voice and how every night I would lie in bed praying for God not to take it away. It took five weeks for us to really start noticing a change in Drew. A change that other people (his therapists and sitters) would notice too.

So, for most people, the biggest fear of starting the shots are the shots themselves. Well, here's how they go down at our house. Every three days, Drew takes a bath with Daddy. They get the TV facing the tub and put lots of bubbles in there to play. Daddy has the shot ready but out of sight. Then, once Drew is comfortable in the tub, Daddy let's Drew know it is coming. He holds him up out of the water a bit and says, "Drew, it's time for your shot." Drew then stays very still except to turn and watch as Daddy quickly (less than a second), sticks him and it's over. Drew doesn't cry at all. No bleeding, no bruising, no nothing. The hardest part is the psycological part for us. Oh, and by the way, we have our's compounded by the Wellness Pharmacy via a prescription. They are not $500. Nothing is cheap in this world of autism but the shots are actually fairly affordable.

Just a side note...we were seeing terrific results, babble turning into jibberish, turning into words. THEN, I started Drew on the Specific Carbohydrate Diet which required him to be off of all his supplements during the beginning. We left him on the shots but soon after taking him off of his supplements, he lost his sounds. This is the hardest part of autism...the gains, then losses. Trials and errors. He had a terrible die off period on the SCD which took him over a month to get over. Slowly, yet again, his sounds are coming back but they are not all back. I'm hoping for the same pattern of results as before: slow at first and then take off with speed. I'll keep you posted.

Today's Menu: cranberry juice, blueberry pancakes, pecan milk, lemon and ginger cookie, meatball w/spinach, sweet bread made from almond flour, green beans, zucchini, turkey w/carrots, green beans, pears
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