|Bubushka teaching the girls how to make Pavlova|
Methyl B12 is definitely one of my most favorite treatments for Autism. You can read about our experience with MB12 here. However, that was written in 2009, since then our experience with MB12 has evolved.
There are many forms of B12 therapy to choose from, different types of B12 can come in oral capsules, nasal sprays, patch and even lollipops. In biomedical treatments, we use the methylated form of B12, also known as methylcobalamin ie. methyl B12 or more commonly known as MB12. Choosing MB12 injection over the other forms were easy for me and my husband. We had learnt enough to know that MB12 shots is our choice for Mei. We couldn’t wait to start MB12.
How you choose to do B12 therapy is based on your child’s unique medical issues as well as other personal reasons. Please discuss with your Biomed doctor and read up more on MB12 therapy. Whether you choose to purchase it in vials, pre-filled syringe, oral, patch, nasal spray or lollipops, please make sure you’re choosing it for the right reasons rather than because your doctor or supplier only carries a certain type thus discouraging you from trying another form because they may not have stock of it and is more concerned about loss of revenue rather than what is best for your child. Take note that MB12 injections are prescription only treatments and can only be ordered by a medical doctor from specialist compounding pharmacies. Discuss with your doctor about the different types of MB12 shots, whether it includes preservatives or not. Some children cannot tolerate the preservatives in MB12, check with your doctor whether he can order preservative-free ones. My girls have no issues with the preservatives though some kids are quite sensitive to it. You may even discuss with your doctor if it’s possible to order MB12 compounded with folinic acid which some parents are already doing. I have not tried this new cocktail (yet!) so I can’t comment on it’s benefits.
Previously, I have never held a needle syringe in my life, and now I’m expected to inject my baby with it? And I have to do it every 3 days? Ironically, I was the one who was begging my doctor a few weeks later to increase the dosage, then to increase the frequency.
Fear of giving injections – many parents when first starting Biomed and hearing about MB12 have strong feelings against giving the shots. Yes, it is extremely nerve-wrecking the first time I had to do the shot. Hubby was holding on to Mei who was screaming and struggling mightily. He thought he had the harder job, whereas I thought he had the easier job.
It took a lot of practicing injecting on an orange before I did it on Mei. We tried on apples and even bananas, but found oranges were more ‘realistic’. We’ve even accidentally injected each other. Mei squirmed so much and never kept still. It was a terrible experience, she screamed on and on and it took us half an hour to calm her down afterwards. The first few shots were awful, but after that it got easier and easier. We found more effective ways to keep her still and the fastest ways to console her. We realize the thought of the injections was scarier to Mei rather than the pain of the injection itself. Mostly because of how we held her in a vice grip, and she could sense our own fears and nervousness.
|Mei following Bubushka’s instruction carefully|
When done well, the pain would sting like an ant bite and would go away in one minute. We’ve been doing it for nearly 2 years now and we do it every 2 days. Now I just calmly tell her it’s time for her injection, she’ll whine and protest but she will comply. Most times, Mei will bend over for me against the sofa, she will complain and fidget at times, she’ll tell me it hurts but she’ll forget about it a minute later. She hates the cold surgical swab just as much as the injection. When I run out of our preferred needles, it’ll hurt a little bit more. We are more adept at doing it though at times we still botch it up. At times there’s a red mark or a tiny dark bruise afterwards if we injected too deep. Paul and I take turns to give her the injection, both of us have our preferred methods.
We are told to do a shallow subcutaneous injection at 30 degree angle or less into the upper outer quadrant of the buttocks. Say what?? Now, it’s easy as pie. Holding the syringe with my thumb and middle finger, then using my 2nd finger to push the plunger gave me the best control and allows me to do a shallow angle. Many of us have the opportunity to have our doctor to show us how to do the first shot on our child. For some, this may not be possible especially for many of us who consult with overseas doctors and are not able to bring our children to the doctor frequently.
You can find many uTube videos on how to give Mb12 injections, from doctors giving you full length explanation to parent’s videos of how they administer the shot to their child. If you are new to MB12, remember that practice makes perfect. Some parents take their children to their local doctor regularly to have the shot administered. Personally, the time and hassle of loading up the kids, get them in the car and drag them kicking and screaming to the Doctor’s clinic because they know they’re gonna get an injection is too much of a hassle. Personally, I’d rather inject them myself at home. However, this is a personal choice, ultimately it really doesn’t matter who administers the shot, as long as it is done well and consistently. In certain Asian countries, you can only do MB12 injections at the hospital or clinic, local health regulations do not allow parents to do it themselves.
Previously, MB12 was hard to obtain in Malaysia, we had to go specially to Singapore or via our other biomed doctors to get it. But now you can order MB12 shots with our Malaysian biomed doctors, please contact them directly if you do not have a biomed doctor already and are interested in trying MB12.
Some parents are very opposed to doing injections because of the needle and pain factor, but I look at it this way – if my child was diagnosed with diabetes and required frequent insulin injections, the same thing applies. It is something that as a parent I have to overcome my fears for the sake of my child. The first couple of months is hard, but soon you’ll be injecting like a pro. Pretty soon your new Biomed friends will be begging YOU to do the injection for their child:-) Nonetheless, whether you choose MB12 shots is a personal choice depending on many factors. The ability to do the injections, our own fears, the horrific struggling by our children, parents who travel often and cannot or should not entrust the caregiver with administering shots and many other factors to consider. You will find which forms of B12 is best for your child.
|The finished Pavlova – contains eggs and cream|
Many children’s Organic Acid Test (OATs) result usually show high levels of B12. A frequent question is why do we still need to do Mb12 shots when the B12 levels are so high? Many Biomed books and web articles will give you a detailed scientific explanation, however this is mine in layman’s Mummy’s terms-
From my understanding, many kids have high levels of B12 in the OATs, but the issue in some kids in Autism is that they are not able to convert it into the methylated form. That is why we still have to give MB12 shots, because it is the methylated form of B12, not plain B12. All the B12 derived from food sources in our children are not being converted and utilized properly, just going round and round but it’s not really doing the job it should be doing. It’s a biochemistry issue that many of our kids have. MB12 in Autism is a methyl donor, an important component in the methylation cycle.
So yes I would do the MB12 shots regardless of the high levels reported in the OATs, especially if you see improvement. Even if you don’t notice obvious improvements, take note if there is regression when you stop. Always remember, test results are only a guideline. However it is the improvements or regressions that you observe that is the true measure of whether a treatment is effective or not.
Some parents find MB12 injections show no improvements or changes in their child even after a few months, these children are usually referred to as non-responders. In my limited experience, it usually came down to a few reasons;
1. Dosage- perhaps the dosage is too low? Discuss with your Biomed doctor on this. One of the beauties of using vials is that you have the flexibility to change the dosage. I recommend consulting with a doctor before you increase the dosage yourself.
2. Timing- many parents choose to do the injection at night when the child is sleeping, thus making the injection easier. In my opinion, the main benefits would have worn out by the morning. I prefer to inject in the morning, this way I can observe the benefits immediately.
3. Oxidative stress- some children are non-responders to MB12. It is now believed that it is due to high oxidative stress for some children. For these kids, perhaps it’s best to stop MB12 for a while and concentrate on lowering the oxidative stress first. Perhaps later on, MB12 will show significant benefits. Please discuss this with your doctor.
So in some kids, the MB12 will not give you the WOW! results we hear about. Until you lower the oxidative stress, the improvements on MB12 will be limited. Just because for now Mb12 doesn’t give you the amazing results you hope for, doesn’t mean it may not happen when you reintroduce it at a later date, when the body is prepared and ready for it. Mei had very high oxidative stress initially, we worked on it for a few months before we introduced MB12 and we saw immediate improvements.
We did MB12 injections on Min Min too, however unlike her sister, Min Min was a non-responder. We tried different protocols, worked on her super high oxidative stress levels and her other issues and reintroduced MB12 again several times. We did not observe any positive improvements nor any regressions, so eventually we decided to stop and conclude that MB12 is not an important part of her treatment.
“Protocol matters!” – Dr Neubrander, World Autism Congress Hong Kong, May 2010.
We all started on Dr Neubrander’s dosage and protocol of every 3 days. However, remember that it is always child specific. So, if you start to notice that the benefits or effects or MB12 wears off on the 3rd day, discuss with your doctor about increasing the frequency to every 2 days. With the help of my doctor, I have tried different dosages and frequencies and finally found the optimum protocol that suits my child best. I am blessed with doctors who are open to different protocols and dosage, fully embracing the first thing they learn at biomedical conferences- that there is no one size fits all.
Some side effects may be expected –
Pink Urine – we are all familiar with the pink urine. This is usually the first urine after the shot. If the urine is still pink even after several wee wees in the day, then the dosage may be too high, please consult with your doctor. What if there’s no pink urine? Err….. Ask your doctor:-) In my highly unscientific opinion, either the child is absorbing all the Mb12 well or possibly the dosage is too low. However, the pink urine is not an indication of optimum dosage. Behavioral, cognitive or speech improvements is your guidelines.
You may notice increased hyper activity in some children. Folinic acid will usually help with hyperness on MB12. Some children experience increased mouthing, this is also a common side-effect. MB12 increases sensations and awareness in the mouth and lips. Most parents reports that the side effects will last 6-8 weeks. However, again discuss with your doctor as to the cause of the behaviors or any issues you are concerned about.
I’m hearing more and more parents are doing MB12 shots for themselves, though it’s mostly the husbands doing so. Yes, at times I give Hubby an injection when he feels he needs a boost. He has more energy, feels clear-headed, his mind is sharper, his problem-solving skills are faster and has better concentration. Other fathers report that they feel happier, work seems easier, less stressed and is in a good mood. I know of husbands who request for an MB12 shot from their wives when they have a super-stressful day at work to look forward to. You’ll find that many Daddies are also our guinea pigs when trying out a new syringe. They give us the thumbs up on which needles are good. And give valuable feedback on certain needles which hurts like hell. Thank you to the Warrior Dads who give it up for science:-)
Though MB12 when administered by injections are considered to be the most effective based on parents’ and researchers’ feedback, please remember that one size does not fit all. If you are currently doing oral or patches and you are happy with the progress, then I say go for it. However if you have the chance to try MB12 injections, it’s always good to see if it may or may not improve your child’s condition. We have been doing MB12 shots on Maya for nearly 2 years now. Though we no longer notice much improvement anymore, whenever we miss the shots for up to 1 week, we start to notice some slight regression, mostly in fine motor skills. For now, we are happy to continue with MB12 du
ring this phase of managed recovery.
These photos were taken when we were on holiday in Australia, we never missed giving a shot even when travelling. In case you were wondering, the photos have nothing to do with MB12 directly. The girls’ great-grandmother Bubushka (means grandma in Russian) is teaching the girls how to make a traditional Aussie dessert – Pavlova, a mouth-watering concoction made with egg-white meringue, cream, sugar and summer berries. A couple of years ago, the thought of Mei learning how to do this under the supervision of her Russian great-grandmother wouldn’t have been possible. But thanks to MB12 as part of our biomedical treatment, we now have these wonderful moments to capture and memories to cherish.
>How you manage to lower your kids' anti-oxidant stress? Kindly share your protocol on this particular issue. I have been using MB12 for almost a year, yet I have seen a fantastic result, but if we stopped, there is a regression. I was wondering if I should look into the method to improve my kid anti-oxidang stress. Thanks.
>Hi there, There are many ways to reduce oxidative stress. There's lots of antioxidants to choose from eg. Vitamin C, CoQ10, Glutathione even HBOT. Though depending on your child's unique issue, discuss with your doctor on which are best for your child. In biomed, antioxidants are a must have. Loads of Vitamin C is recommended. I will share what I did soon.Also consider if your MB12 dosage is enough, have you tried increasing the dosage or frequency? Perhaps try a different compounding pharmacy or formulation, with or without preservative? Do you have folinic acid in place? Also depends on what other supplements you are doing too. MB12 by itself alone doesn't address the many many issues our kids have. Please email me at firstname.lastname@example.org if you wish to discuss more.Marissa
>What is the MB12 dose for kid? how to decide the increasing dosage? what is the max?
>What I read in the TACA website, it says:64.5mcg (microgram)/kg/every 3 days. How to convert it in mililitre (ml) for the syringe measurement? Sorry, I am not good for this. Please comment.
>Oh dear, I'm terrible at math myself! Your doctor should have calculated the dosage for you? I had to get a friend to help me calculate the dosage for my hubby:-) When we first started, Maya was around 13kg, the Dr prescribed 0.03ml, within 1 week we noticed no difference so he increased it to 0.04ml. Working closely with my doctor, we finally found 0.05ml every 2 days to be ideal for Maya. MB12 is water soluble, so I don't think there's a high chance of overdose, but I'm not a doctor so I really can't advise. But it's best to get a doctor to guide you initially. Hope all goes well for you.Marissa
>Hi, you mean 0.05ml for body weight of 13kg in alternative day?
>Maya was nearer to the 14kg mark at that time, she is now 15kg. We still maintain 0.05ml alternative day. However, dosage also depends on the compounding, depending on which compounding pharmacy and the formulation your doctor ordered. Ours is 25mg/ml, so check your source! A friend learnt this the hard way, her doctor prescribed a certain dosage and provided the Mb12. However when my friend had run out, she decided to "borrow" a couple of syringes full from me, though I was shocked at the amount I assumed it was because her child was much older and heavier than I. Soon after, we realized her initial dosage was based on a compound which was different formulation. 0.05ml of my compound may very well be different from your source.
How do I know whether my child is suffering from Oxidative Stress.. Is there any test which I need to get it done for my nearly 4 yrs son??
Hi Vikas, Oxidative Stress was shown on the OATS test we did by Doctor’s Data. A biomedical doctor would be able to advise you on what tests are recommended for your child.
Pingback: Methyl B12 – Shots, Lozenges, Lollipops and Nasal Spray | Spectrum Mum in Malaysia