Tag: Autism

You mthfr!

If you looked at the title and thought, ‘Wow! A post about MethyleneTetraHydroFolate Reductase’ then you’d be right! If you looked at the title and thought about something or someone else…actually what else could you have been thinking?  We’ll get to the title later.

Have you heard of String Theory? It is a very VERY complicated theory that explains the parts of the universe that are too small to be explained by Einsteins theories of relativity. And when I say small, I mean we need a whole new word for small. The best example i’ve heard, is that if an atom where the size of the solar system, a string would be the size of a TREE! That is mind boggling to say the least. String Theory and particle physics have been controversial for a long time, in no small part because there wasn’t one model of the theory for anyone to agree on! There were in fact 5 different theories to explain strings and the evolution of the universe. It was said at the time, that ‘If one of those theories explains the universe, then which universe’s do the other four explain’. It was not just food for thought but a whole damn smorgasbord! Then one day, a very brilliant man with a soft delicate voice, an unassuming perona, and an enormous brain called Ed Whitten, announces that he had unified the five different string theories into one that he called ‘M Theory’. As a basic example, if I asked you to hold up your pointer finger and describe it, what would you say? Well, for a start, there’s a fingernail at the top that is hard, it has a white bit a the top, a pink part in the middle and a half moon in a lighter shade of pink at the bottom. There a two convex knuckles which are a bit wrinkly (and becoming more wrinkly every day), there is a vein popping out and a mosquito bite and when I bend it, it points away from me. Now, turn that same finger 180 degrees, and describe it. Well, it’s the same colour, but it’s much smoother. At the top there are strange markings that are unique to each finger…on the entire planet! There are horizontal lines that are a darker colour and when it bends, it points towards me. One thing, two different descriptions. Basically, what the incredible Ed did, was to look at the existing theories from a different angle. In doing that, he saw that they were all describing our universe, just at slight different angles. Pretty impressive stuff.

 

It has been said before, and will be said again,  the human body is truly a wonder.    The simplicity of the outside of our bodies belies the intricate dance of systems, organs, networks, hormones, amino acids and neurotransmitters that is going on inside.  And thats just to name a few.  There are armies of workers going to and fro, cleaning house, transmitting information and letting in nutrients, breaking them down to smaller pieces and sending them where they need to go and others that are  takin’ out the trash. There are trillions of bacteria living symbiotically in our mouths, and digestive tract producing essential vitamins and compounds that help make up our immune systems, as well as killing off bad bacteria so that we stay strong and healthy.  Our amazing bodies are ALWAYS trying to keep themselves in tip top shape despite how it sometimes seems.  When we are overwhelmed with symptoms and illness it’s easy to think your body has turned on you, when it is in fact trying to do the opposite.  Your body does not just employ single organs to do specific jobs. They are intricately connected in ways you can’t even imagine!  One such example is Methylation.    It is on an incredible scale of complexity and is happening  as you’re sitting reading this, but we’ll get into that later.  When you’re doing biomedical interventions for Autism, there are a few standard issues and treatments that almost everyone agrees on.  Digestive issues, allergies,  a high toxic load of mercury and other metals, and an out of whack zinc/copper ratio  are the most common. As it turns out that the vast majority of Autistic individuals suffer from all of these conditions and many treatments are based on or around correcting digestion, removing allergens like gluten and casein, removing toxic metals and balancing zinc and copper.  Probiotics are a standard treatment as is fish oil and omega 3 supplementation.  Then there are the countless other issues that affect kids on the spectrum. In fact, the symptoms in and of themselves are a spectrum.  Each child is so different, and what may affect some won’t affect others.  It is a very complex, and multilayered condition, as it is almost impossible to know what issues they would have been dealing with if they didn’t have Autism.  But what do you do, and where do you start when your child has a seemingly impossible and seemingly unrelated set of symptoms as long as your arm?????  I’ll give you a quick run down of my little man’s rap sheet.   Eczema (from one month old), digestive problems (from day one), multiple food and chemical sensitivities, high histamine, low zinc/high copper, low magnesium/high calcium, high cortisol, intermitant  fevers, aggression and anxiety. You keep on looking.  You  research each symptom and deal with them one by one and if you’re like me you do that for many years.

Like those tireless String Theorists looking for solutions to endless questions and problems, carers of Autistic children, or in fact any child that has any type of issue, sometimes you just feel that you reach a dead end. Sometimes the problems seem as though they’ve gotten so big and so exhaustive, that no solution is actually possible!  But of course in this magical universe, there is always another avenue to explore.  They can dawn on you slowly as you acquire information piece by piece, or they can pop up out of nowhere when you least expect it. And on very rare occasions, they happen simultaneously. MTHFR Avenue popped up on my inner GPS as I was doing yet more research on Histamine. I was looking for what started the high histamine sequence of events and it happened. I had a moment when all of my theories came together. That moment when right before my eyes, on the very computer screen i’m typing this onto, revealed  the answer to most of my questions. I had that moment when your whole body comes alive and boundless energy surges through you as this information fills every gap and satiates the previously insatiable hunger for answers. Like ‘Neo’ from ‘The Matrix’, I had an ‘I know Kung Fu’ moment!  My head was full of this new information and it all made perfect sense, it was the missing link in this broken chain of symptoms. BBBAAAAMMMMM! I was Ed Whitten!

So, what is this MTHFR? Well, in the words of the little guy from the Curiosity Show, ‘I’m glad you asked’.  In your body at this very moment, you  are undergoing an incredible process called ‘Methylation’.  Methylation is almost as complicated as String Theory to my untrained brain, and I am slowly trying to wrap my head around it.  I’ll do what I can to explain it.

Gene’s in our body act like switches, turning processes on and off. The MTHFR gene is responsible for converting Folate (a B vitamin, also known as B9)  into methylfolate. The conversion of folate to what is known as 5-methylTHF, is the beginning of the Methylation cycle. The cycle is like cogs turning, and each cog relies on the next  for the smooth and proper functioning of itself and each function from there on. The central cog uses the converted folate, and  methylcobalamin  (B12) to produce SAMe, and reduce Homocysteine. It brings in Methionine, B6  and Cysteine to produce the master antioxidant, Glutathione. This process also sets in motion, on the other side of the cog, yet another cycle called the BH4 cycle, which is responsible for the neurotransmitters Seratonin and Dopamine, by the conversion of the amino acids Tryptophan and Tyrosine. PHEW!   When I say I have simplified this process i’m not kidding.  Google ‘Methylation Cycle’ images and prepare to be blown away!  It is beyond description, and I have not done it justice by any stretch of the imagination.   But the point is not the cycle itself, but that one seemingly small thing can trigger such a cascade of symptoms and diseases.

 

The functions of the methylation cycle include :

Detoxification
Immune function
Maintaining DNA
Energy production
Mood balancing
Controlling inflammation

To put that into perspective, here’s a list of what happens when it’s not working properly

Cardiovascular Disease
Cancer
Diabetes
Adult neurological conditions
Autism and other spectrum disorders
Chronic Fatigue Syndrome
Alzheimer’s disease
Miscarriages, fertility, and problems in pregnancy
Allergies, immune system, and digestive problems
Mood and psychiatric disorders
Aging

It seems that a mutated MTHFR gene is becoming more and more common, as it is passed down from generation to generation. Down’s Syndrome and other genetic diseases are also implicated.

So, what the hell do we do?  Thankfully, there is a simple  saliva test, which we shall be undertaking shortly, that can test for mutations in the MTHFR gene.  The gene can have up to forty mutations and the treatment depends on where the mutation occurs. I don’t know yet if every mutation has a treatment, but believe me, i’m working on finding out.  Some treatments however, can be as simple as taking the already converted form of folate called folinic Acid.  I have already seen incredible improvements in my own Mum after suggesting she try this form.  She takes a drug for her Arthritis called Methotrexate, which actually depletes the body of folate, which then causes Methotrexate toxicity.  Her doctor had prescribed folate for her to take, but every week, for 3 days after taking the drug, she was incredibly sick even with the folate.  After discovering all of this, I gave her the folinic acid, and her sickness has vanished! It has been quite a remarkable difference, and most certainly points the finger at the likelihood of her having a mutation.

Although it may seem a depressingly long list of issues, I am so excited by the possibilities.  It also unfortunately raises quite a few questions which I will address in the next post, regarding folate in our food supply.  But for now, let’s rejoice in the wonders of the human body, the incredible discoveries of mankind and the little universes that are our kids.

 

Kitty. xx

 

 

 

 

Evolution, revolution and de-evolution…

About 100,000 years ago, a woman known as ‘Mitochondrial Eve’ existed in Africa.  She is actually the mother of us all. Isn’t that an incredible thought?  That we all came from one woman in Africa?   She gave birth to children, who grew and gave birth to their own children, who grew and gave birth to their own children.  You get the idea. In the last hundred thousand years, lots and lots of babies have been born.  We still have a lot  in common with those ancient ancestors of course, however there are a lot of tribes around the world who have a lot more in common than us in ‘civilised society’. It  seems to me that of all the creatures on the planet, human beings seem to be the only ones capable of de-evolving and  that is becoming more and more obvious as time goes on, and it’s going to get more and more problematic.  In many ways as a species, we have come so very far.  We have created the most incredible creations, built the most beautiful buildings, painted the most glorious paintings, and every day new discoveries and advancements are being made.  Advances in health, advances in technology, advances in our understanding of the universe and how it came to be, but there is a price to be paid, and it’s a big price.  We are losing a very valuable commodity in the process. One that has been with us since the dawn of human kind, and that is the very thing responsible for the fact that we are still here all this time later.  I hear you wondering…Is it common sense?  Is it manners? Is it the ability to pull our pants all the way up without exposing part of our underwear? Well, obviously it’s not the last one, although, I do have an opinion on that matter, but no, it is something much bigger. It is instinct. As Gavin De Becker says in his book ‘The Gift of Fear’, “Only human beings can look directly at something, have all the information they need to make an accurate prediction, perhaps even momentarily make the accurate prediction, and then say that it isn’t so.”  What he means is,  even when we have information in front of us, we have been conditioned to override our instincts in favour of information from another source rather than to trust all of the information coming in from our senses.  Our sensory system is incredibly  complex.  It is capable of processing enormous amounts of information simultaneously from  our senses, such as visual and audio clues, smells, temperature changes, and our environment, to moods and expressions on the faces of others, as well, i’m sure, as abilities that are yet to be discovered and this can all happen within seconds.

I think there are many reasons for this and when you think about it you may have had the experience of overriding your instincts before. Think  about teenagers?  Plenty of teenagers will ignore their instincts, and get into a car with a drunk driver, or try drugs in favour of looking cool, and how many of them have paid a terrible price?  As a society, we tend to look down on people who trust their own instincts and instead trust a specialist or expert.   I have had this experience many times, and not to blow my own trumpet, but my instincts are always, always right, no matter what the specialist has said. As a very basic example, a couple of years ago, Fraser had some very odd and very extreme behaviour. I knew something other than Autism was at play.  After a few months of research, I asked his paediatrician to test him for the presence of Streptococcus antibodies. I had done my homework, I had put the pieces of this new puzzle together and  I was at the point where I just knew it!  Of course, I had to convince her to agree to the test.  She gave me many reasons why I was wrong, rather than  trusting my instincts.  I persisted, and of course, even though he was not ill, he had a large amount of strep antibodies wreaking havoc on his brain. My instincts were correct, and my goal was in no way to prove her wrong, because I honestly didn’t care what she thought (I am well used to be looked at and spoken to like i’m a nutter) I just needed to solve the problem and get my boy back.  Blood tests for any child are difficult, but it is downright dangerous trying to draw blood from a kid like Fraser. It is not something I would ask for if I didn’t have a good reason. I am not out looking for problems that don’t exist and I don’t have’ Munchausens by Proxy’!  This was yet another lesson on why I should trust my instincts.  To  take what specialists say, not necessarily as gospel, but as information to be digested, taken apart  and used in a way that make sense…that computes!  I do believe that these specialists really do mean well and they should get credit where credit is due, as they do amazing work. They are giving you information that they have learned from years and sometimes decades of training and experience, however, it is not necessarily relevant to your child.   I have had MANY experiences like this with Doctors and specialists, and I can honestly say, that there are 3 or 4 that I have seen over the last ten years that have actually listened to ME!  There are those that respect my observations and take them seriously then there are others, like one paediatrician who called me ‘strange’.  Seriously!

Autism is sadly not going away any time soon. In fact, I read the other day that in the USA, the statistics have jumped to 1 in 50 children!!! Can you imagine the outcry if Autism was infectious or fatal at that rate?  Things would certainly be happening at a faster pace.   Governments would be throwing money at the problem as they did with AIDS and the SARS virus. While Autism is not a terminal illness in the traditional sense, it is completely and permanently life changing, and I think we as a species need to reorganise our priorities on many issues, not just this one.  Don’t even get me started on Euthanasia for the elderly or terminally ill!!!   As it stands, the responsibility of curing and/or preventing Autism Spectrum Disorder falls to a relatively small amount of researchers, specialists and incredibly dedicated parents.   If you are not familiar with Autism research, you can’t imagine the work some parents are doing and  the commitment they are giving to their children.  There are incredible people doing incredible things, and often they have to do them against medical advice because the doctors don’t advocate these treatments.   I am not a member of any Autism chat rooms but I do read what other people are doing and I am in constant awe of the work these parents are doing. There are some truly incredible people out there. There are amazing doctors too, who are doing incredible work on the gut, there are people doing work on under methylation and how it not only affects Autism, but many other diagnosis as well,  and working out therapies . We are progressing….BUT,  it is my belief that this progress will invariably be stunted, until specialists and experts start listening to parents and patients. Not just in relation to Autism, but to any health issue.  There are so many examples of what happens when a determined parent and a specialist come together as a united front, one of my favourites is of course Mikaela and Augusto Odone, you might remember them from a  movie called ‘Lorenzo’s Oil’. In 1984, Lorenzo Odone, son of Michaela and Augusto, was diagnosed with a terrible degenerative, and ultimately fatal disease called ALD. Unable to accept the fact that there was nothing that could be done for their son, they set about finding a cure themselves which they did.  While it came too late to reverse Lorenzo’s disease, they did stop it in its tracks. Their cure, Lorenzo’s Oil, has saved thousands and thousands of boys from a terribly long, slow and painful death. Then there is the incredible story of Ellen Bolte  whose son Andrew, was born normal and developed normally for three years.  At the age of three, he was diagnosed with an ear infection and prescribed antibiotics, which didn’t work, so the doctor prescribed five more courses of antibiotics. FIVE! What happened while he was on the antibiotics was what his mother describes as ‘shutting down’.  He became withdrawn, and didn’t want to be touched, he lost all of his speech and began eating non food items.  He also developed many gastrointestinal symptoms.  He was eventually diagnosed with severe regressive Autism.     She studied her son and investigated what was going on in his body because she knew he was in there still, and she desperately searched for a way to get him back.  After endless hours researching, she discovered that a  virulent strain of bacteria called Clostridia seemed a likely candidate for the symptoms Andrew was suffering from . Clostridia are a very hardy pathogenic bacteria that release neurotoxins that affect the brain.  She began writing to doctors asking for help. She finally took Andrew to a gastroenterologist who, at his mothers request, gave him an antibiotic to target Clostridia, and within ten short days, her son was back to normal.It was a true miracle.  Ellen and the doctor, took the information to renowned microbiologist Sydney Finegold and he agreed to help them do a pilot study on other children.  Upon testing, Dr Finegold found higher than normal amounts of Clostridia in children with Autism. But there was a catch.  When Clostridia are attacked (by antibiotics), they release spores that are antibiotic resistant so the life cycle continues, reinfecting him with the bacteria once again. Heartbreakingly he went back to being severely Autistic.  The antibiotic was incredibly strong and there was no way he could stay on it for life without doing serious damage to his other organs.  He is now in his 20’s and doing okay on ENORMOUS amounts of probiotics that help to suppress Clostridia, but he will never be ‘normal’.   The initial success should have been enough for researchers to take notice and try to find a way to kill the Clostridia spores, possibly helping thousands of children who might be affected by Clostridia in relation to their regressive Autism.  So what happened?  Not a damn thing. No matter how much Ellen and Finegold pleaded, no one would listen.  They published a report in a peer reviewed medical journal and still….nothing!  What a tragedy this story is.  After all of that effort, the blow of having a child with a major disability may have been softened by the fact that his journey helped other children.  But alas, these incredible break throughs are a distant memory. For some bizarre reason, Autism is viewed as a brain disorder and nothing more.  Perhaps once the brain is picked apart nanometre by nanometre and nothing is found, will the hunt through the rest of the body begin. I’m not saying that it’s not possible that the brain is not involved in triggering Autism, but there are many other factors such as allergies and digestive issues that are common denominators and they are being completely overlooked.  I find it so strange.   I have only just discovered, that while it seems that Fraser doesn’t have a problem with Clostridia,  he is totally lacking  (he literally has 0%) of one species of good bacteria in his gut, as it has been totally dominated by another species.  This is a friendly, good bacteria, however…it’s a bacteria that release amines including good old Histamine.  So, we now stand at the cross roads.  Do we give him an antibiotic to stop this good bacteria from multiplying further, and possibly ‘unleash’ something else like it did in Andrew?  I don’t think so.  As much as I would LOVE to try it, the risk that he could get worse is as great as the risk that it could work.  So our journey forward will continue with probiotics and supplements at this stage.

Ellen and the Odone’s followed their instincts, no matter what outcome they were told.  They KNEW they could help their boys.  They knew that no one else would invest as much into their children as they would or could and they knew they had everything and nothing to lose if they didn’t at least try. Many, many lives have been saved as a result of the Odone’s work and there is still the possibility that Ellen Bolte’s work could be lifechanging for countless families if the research is continued on Clostridia and other pathogens.

We are living in a wonderous time were we have access to a world of information.  If we don’t like or agree with a doctor or specialist, we are spoilt for choice and can find one that we do connect with. We can learn to trust and listen to our feelings.  We don’t have to push them down, suppress them and talk ourselves out of them.  The difference between being nervous and fearful, can be two different things and I think the time has come to reawaken this lost gift, reignite the senses and harness one of our most incredible and ancient powers!

Kitty xx

Lithium…more than just a really cool Nirvana song.

Okay, it’s also a cool song by Evanescence, but I just couldn’t fit that in the title. Anyhoo, i’ll get to that later.

My all time favourite movie is Apollo 13, not only because of the great acting, direction, music, attention to detail and because Tom Hanks is in it,  but because, at its heart, the true story of Apollo 13 is a testament to what incredible things human beings can achieve not only when they want to, but when they have to. The differences between wanting to and having to can be vast indeed, but when the desire is there, great things can happen. The movie is obviously about the Apollo 13 mission to the moon in 1970 that ultimately ended up almost costing the astronauts their lives. Jim Lovell, the mission Captain, had been in an unexpected situation before and referred to it in the movie…

'I remember this one time. I'm in a Banshee at
 night in combat conditions, so there's no running lights on the carrier. 
It was the Shangri-La and we were in the Sea of Japan, and
my radar had jammed, and my homing signal was gone
because somebody in Japan was actually using the same
frequency and so it was leading me away from where I
was supposed to be. And I'm looking down at that big black
ocean. So I flip on my map light. And then suddenly zap
everything shorts out right there in my cockpit, all my
instruments are gone, my lights are gone, I can't even tell
now what my altitude is. I know I'm running out of fuel, so
I'm thinking about ditching in the ocean and I
look down there and then in the darkness there's
this green trail, it's like a long carpet
that just laid out right beneath me, and it was the algae,
right. It was that phosphorescent stuff that gets turned up
in the wake of a big ship and it was just leading me home. 
And... if my cockpit lights hadn't
shorted out, there's no way I had ever been able to see
that. So you never know what events
are gonna transpire to get you home'.

Yesterday, I took my kids shopping to the local shopping centre (‘whoa Kitty, livin’ large’! I hear you thinking), which, with a child with autism, can be fraught with peril and could be very aptly described as ‘combat conditions’ as the list of possibilities can be endless, from running away, to screaming (his sisters favourite…NOT), demanding ‘chocrat’ or ‘chipst’ at the top of his voice and heaven forbid anyone knock him, ’cause he not only has autism, but is afflicted with  ‘indignation’ and he will give, bigger and better than he got if he’s in the right (or wrong) mood.  In his defence, shopping centres are those mystical places that to some of us humans, are calling to us like the Sirens of myth and legend, while to others, they are like torture chambers that do nothing but inflict pain and discomfort. My husband is in that last category and he doesn’t have autism.  So poor Fraser has been hit twice, not only does he have the big ‘A’, but he is also,  just a chip off the old block!

Anyhoo, before I tell you what happened  I will go back a few weeks, as I want to keep you in suspense.  As I have previously mentioned, in the last few weeks of school of 2013, I started to treat Fraser for his high histamine by giving him large doses of vitamin C, calcium and a half a Zyrtec everyday and the results were nothing short of miraculous.  That was then.  What has been happening is that he has had a major exacerbation of symptoms, which is common as you are pulling histamine (or any type of toxin) out of tissues to be removed from the body.  He has been very difficult to handle at times. He has ranged from just looking and feeling unwell to being so agro that he’d have Mike Tyson cowering in the corner.  This is soooo difficult to watch because he just looks so tormented.  So, when you see your child turn from calm, happy and settled with no negative behaviours, to one that is raging, agro and out of control, what do you do? PANIC!!! I couldn’t call for help on the radio, and the lights had shorted out, Like Jim Lovell, I was flying blind!  I know you’re not supposed to panic, you’re a mummy, that’s not what you’re supposed to do…at all, but I just couldn’t help it.  A year ago he was ‘asked to leave’ his special school and here we were, a year later, possibly back where we started  dealing with the same unmanageable behaviour.  Now, I knew as I dealt with the Histamine, that this could happen, but sometimes, as a Mummy, the logical part of me is not in control.  The funny thing is, if I saw someone else’s child going through the same thing I know I would say ‘don’t worry, this will get better’ but I couldn’t do it for myself in the panic mode I was in, and as much as I love my hubby, he’s hopeless at that.  His big advice when he saw me stressing was ‘stop stressing’. Yeah right!  So, my panicked but curious Capricorn self kicked in and began what i’ll call a ‘fractal quest’, one that has branched of the side of the main quest. So, I  stayed up researching late into the night, and something crept into my head that had made it’s way there before during another difficult time.  It was the thought that ‘maybe there’s something else wrong here’.  As difficult as it was, I started to look at childhood schizophrenia and bipolar, and while he has some overlapping symptoms (which is very common), I wasn’t convinced either way.  As I said, I was in panic mode, and I had to find a way to help him settle.  He had been on a very low dose of Risperdal (an antipsychotic) for the past year, and there was no way, we were going to raise the dosage.  I hated giving it to him at the best of times, but when he was agro, it seemed not only pointless as it clearly wasn’t working, but dangerous to continue.  I searched and searched, like Captain Lovell looking for something, anything to guide him, and then, I found my green carpet laid out for me! While it wasn’t as clear as that at the time, the sound of it glittered like hope in my head. Enter ‘Lithium Orotate’ (now the title should start to make some sense).  I started researching the overlapping symptoms of Autism and Bipolar and the supplements for children and adults with these overlapping symptoms when I read about the  Lithium Orotate.  Just to be clear, Lithium Orotate is a naturally occurring mineral and nothing to do with Lithium Carbonate that is prescribed by psychiatrists for Bi-Polar.   I started reading reviews and blogs by other parents and sufferers and it sounded fantastic, in fact,  it sounded waaaay to good to be true but, as I said, I was in panic mode, and with a tingle of hope, I searched and  found some locally available, and had it express posted the next day, and made the decision not to give him the Risperdal anymore. I had wanted to get him off the medication since the first dose! But he needed it at the time.

I don’t know much about Lithium Orotate and I don’t for a second want to pretend that I do, I just want share the journey of what i’m doing, and I invite everyone to do their own research before putting anything into yours or your child’s body, however, I felt that I knew enough at that point to give it to him safely. What I do know it’s that Lithium Orotate works particularly well on Autistic children who have high levels of toxic metals (as Fraser most definitely does)  so, I nervously gave him the first dose.  I really was nervous, because I’ve had bipolar friends on Lithium and I know how much trouble it can cause. I had to get my head around the fact that this was different. I cut it in half, put into the good old peanut butter and watched nervously.  Now, 30 days is what I read is the time it takes to build up in the system and have a noticeable effect, so I was only watching to make sure nothing negative happened to him.  Within an hour, he seemed a little sleepy, but so calm!!! He just seemed happy, like some of that inner tension had just evaporated! I was perplexed, and still am that this happened so quickly!  It has been five days and he is a new boy… again!

So, shopping centre story.  I said to little man, ‘we have to go to the shops and get some things, then we’ll get you some chips’ (have to sweeten the deal somehow), so off we went.  For the first time, he got into the car without a twirly ( tape measures he like to twirl around his fingers, he doesn’t go anywhere without one and hasn’t for years), no iPad, ipod or even a book.  He calmly got in and put on his seatbelt.  We went to the supermarket and got some food, and he was fine. We went to Ishka because it’s his sisters favourite store, and he was fine. We went to the food court and as I lined up to get his beloved ‘chipst’, proudly watched as my children calmly sat at the table and played together.  He finished his chips and happily sat and waited for us to finish our lunch (he’d normally run off as soon as he was done and yell ‘cart’ to go back to the car), while smiling and looking around at everyone and everything.  We then went to Kmart, where he excitedly bounded around looking at books and DVD’s. He got himself a Lion King book and happily carried the bag of shopping back to the car.  So lets re-cap…busy supermarket, check! Small overstocked, pungent smelling, brightly coloured specialty store, check! Noisy, pushy, overcrowded food court, check! And hugely overwhelming department store, check!  It may not sound like a big deal to you if your child doesn’t have Autism or sensory issues, but for us it was incredible.  I got to feel like a normal Mummy!  It was so joyous watching the kids walking hand in hand through the centre.  As much as I enjoyed watching them enjoy each others company, I wanted to shout out to everyone in the food court ‘check this out’!!!  Once we got home, didn’t pick up a twirly until 3 in the afternoon.

At this point I don’t know if it’s just the Lithium, the lack of Risperdal, or the lowering of the histamine, but he’s happy again, and that’s all that matters for now.  If he wakes up agro again tomorrow, I know that peace is possible, and the right balance will make it happen again, as there is more than one green carpet.  As I have been researching, I have found something incredibly interesting.  Risperdal (the potent brain shrinking anti psychotic drug he was on) is a potent anti histamine!!!!!  I have to wonder, if it’s course of action in the year he was taking it, has been not by affecting his dopamine levels as it was prescribed for, but lowering his histamine. It seems that with all of the other histamine lowering supplements, that the risperdal’s method of action in Fraser’s body was not only no longer needed, but causing the very aggression is was supposed to curb!!!!  The great thing is, that none of it was in vain, as without this course of events, we wouldn’t be riding the green carpet today.  I’m not a big fan of medication, but as i’ve said previously, it is often necessary.  What is the point of doing all of the other things to help, if you can’t get the stress levels down! There’s not a lot of point to dragging out excess histamine and toxins if the adrenals are going to be shrivelled up little prunes by the time your done! Cortisol and stress MUST be kept low as much as possible and there are many herbs, supplements and medications that reduce stress.  Finding what works is such a hard slog, but ultimately worthwhile.  It seems for now, that things are continuing to look up again.

There is one thing final thought that I want to leave you with. In the midst of all of this, I wrote an email to Fraser’s pediatrician outlining his behaviour, but I never sent it.  I saved it to drafts and didn’t think about it again.  Two days ago, Fraser took his Dad to the computer, opened up the emails, and went straight into the drafts to the email about him.  He wanted his Dad to delete it.  We don’t know how on earth he knew it was there. He certainly wasn’t around me when I wrote it, but he somehow knew it was there, and wanted it gone. This child continues to amaze me in every way. It seems that he has been craving foods for many years, that contain the most natural lithium…bread (grains) and potatoes (nightshades), and since starting on the Lithium, his need for large amounts of these foods has markedly decreased.  At this point all I can say is…’watch this space’.  I’ll keep you posted,

Kitty  xx

Vaccines & the Holden Monaro

This blog might surprise you. Probably from the title you think you know what i’m going to say, but hopefully you’ll be pleasantly surprised and maybe even a little bit enlightened. That’s a lot to hope for I know, but I really think it’s time to change direction on this issue in the name of progress. I am at no point going to give my personal opinion on vaccines, as I believe it is not only counter productive to do so, but would  negate most of what i’m about to say and that would be silly indeed.  My sole aim is to make this world better and safer for our children, our children’s children and so on.

It seems on the issue of vaccines that every one has an opinion, and so they should.  Whether you choose to vaccinate or not to vaccinate is your choice (for now).   However, some people have strong opinions. REALLY strong opinions.  So strong in fact that in the case of some pro-vaccine advocates, they have gotten to the point of showing absolute disdain and disgust for parents who choose not to vaccinate.  There has been high profile media personalities injecting (pardon the pun), their own personal (or network) agendas into the issue, which then creates disharmony, judgement and fear among the public and this is only the tip of the iceberg. Disdain and disgust do not belong in this arena. There are people out there doing terrible things to innocent people and animals, and while we might be disgusted or appalled for a moment while the news story is on, we move on to whatever is next, but mention on a tv morning show that you don’t believe in vaccination and be prepared to be lynched!

When I began my crusade to help my autistic son, 10 years ago, I mentioned to a couple of doctors that I was trying diet and biomedical interventions, and one of the kinder things I was told was that I was ‘trying to reinvent the wheel’.  What they meant (in more than just those words) was that it was a waste of time and that I should not question and stick to the set protocols. ( In Australia that meant early intervention and possibly medications. That was it!)  I often left feeling deflated and discouraged, when you would think that a mother trying to help her child should be encouraged.  I’ve been thinking about this ‘reinventing the wheel’ comment lately as I work on my son’s issues and i’ve come to this conclusion…what is so wrong with trying to reinvent the wheel?  Can you imagine how a Holden Monaro would perform if its wheels were sandstone and not Bridgestone?  So, with that said, I think it’s time for the vaccine issue to be reinvented.

Like a holy war, what he have is an impasse, where one side is right and the other side is wrong, but which is right or wrong depends entirely on the side you happen to be on.  Holy wars can and have gone on for hundreds if not thousand of years, with little to no progress along the way, but always casualties.  In the case of the vaccine war, it is children who are at risk of being casualties. There are obvious reasons for this. As most children seem to tolerate vaccines well, there are a percentage that don’t.  If your child has not had a bad reaction, then this issue will not have much relevance for you, but it is very relevant to families of vaccine injured children. It is fact not fiction, that there are children and families that have endured horrific suffering due to reactions to vaccines (and other medications).  There are ‘side effects’ from every single medication on the planet. There are medications that are without a doubt, lifesaving. Without some of those very medications, my husband would not be with us today, but of course for the most part, you still need to weigh up the good and the bad.

What I am suggesting is that it really doesn’t matter who’s right or wrong.  Vaccine advocates and governments (I will leave the drug companies out of this) are trying to prevent current and future epidemics and outbreaks, they are trying to see the bigger picture, and that is their job whether you agree or not. Anti-vaccine lobbyists are also trying to see the bigger picture, and are trying to dispel fear and protect children and families from harm now and in the future.  Everyone really wants the same thing, it’s just different sides of the same coin and neither side is going to back down, So what do we do now?

What if we at least met half way? What if, doctors and medical staff took a full family medical history including allergies, before a new born is injected irreversibly with a vaccine?  Would that be so bad?  What if drug companies took out dangerous ingredients like Thimerosal and add a preservative that is at least a bit safer? We know after all, without a doubt, that mercury IS neurotoxic. Would that be so bad? What if parents  waited a little, and took some time and spaced the vaccinations out? Would that be so bad?  What if at least, a basic medical examination was done on each child before each vaccination (glands and temperature at least checked) to try to ensure the child was not compromised in any obvious way? Would that be so bad? What if governments insisted that drug companies use safer ingredients? Would that be so bad? And, what if governments afforded parents the right not to vaccinate, without penalties? What if, we did everything we could to make this situation safer? What if we all met half way for the sake of our kids?  While these things are being done, the next step is for people to respect each others decisions.  This planet is rife with judgement. It stinks and it’s time to stop. People should be entitled to make their own decisions without fear or judgement. In lieu of judgement, the dissemination of information  should be open and on going and can hopefully be given and received with respect on both sides.  We are all happy and lucky to be living in a democracy, and it should continue that way.

Before I finish my little rant, I do have one observation i’d like to make.  I am continually amazed when a pro-vaccinist gets concerned over the thought of an epidemic from children who aren’t vaccinated.  It’s not exactly a ringing endorsement for vaccines! If you’re child is vaccinated, you don’t have anything to worry about, do you?  There are people out there who vaccinate their children, because they just go with the flow. It’s just what you do. Then there are those who are fearful either way and put time, consideration and hopefully some research into their decision and we all have to be aware that either way, it can be a very difficult decision. Sometimes it may not be one big decision, but many smaller decisions along the way as their child grows.

I hope I don’t sound too scalding,  but while I stand by not giving my personal views on vaccines, i’m happy to share my views on judgement of others as you’ve just discovered. One of my favourite lines from my very favourite tv show, Modern Family, is when Mitchell locks the baby in the car.  When he calls for help he says to the operator, ‘we’ve locked our baby in the car…and people are judging us’!  We are all judging and being judged whether we even realise it or not.  Lets endeavour to look after and support each other instead, and make the world a better and safer place at the same time.

Kitty xx

Link to my app 🙂

https://itunes.apple.com/au/app/emotion-fonts/id779305002?mt=8

Probiotics for Histamine

Probiotics are an essential tool in your Autism arsenal. Most, if not all Autistic children, have digestive issues, and allergies/sensitivities. If you’ve been researching it for a while, you’ve probably come to the conclusion, like a lot of us, that Autism is a gut, not a brain disorder.  What is little known, is that there is a second brain in the gut.  It produces neurotransmitters, just like the one upstairs.  Now, i’m not saying that there aren’t things going wrong in the upstairs brain, but we need to fix the ‘gutbrain’ first.  When you think about a drunk person you can get your head around it.  Are they walking funny, and talking loud and slurring their words  because of something that has happened to their brain?  Yes, they are, but it didn’t start in the brain.  The behaviour is a direct result of something they put in their mouth, that went through the liver and digestive system, then altered the way the brain perceives the world around it and the way they behave.  The input altered the output.  If you use that analogy with Autism, you can see why it’s so important to fix the gut first.

So probiotic basics.  There are many different strains of probiotics available and they all do very different things. At the moment, I am treating Fraser for high histamine, so this is my focus at the this point.  Below is a list of different probiotic strains with what they do, and whether or not they raise histamine, lower histamine or are neutral.  If you give a probiotic that raises histamine to a histadelic child, then even with the best of intentions, you are going to make it worse.

Before I give you the info, I must make the point, that giving probiotics should not be taken lightly.  You must start slowly and build up slowly over time.  Children, especially Autistic children are very sensitive, and you can cause major die off symptoms such as eczema, rashes, diarrhoea, vomiting and flu like symptoms, so slow and steady dear friends!

HISTAMINE LOWERING PROBIOTICS

L. Plantarum 

Produces natural antibiotic Lactolin, synthesizes L-lysine which is antiviral. Can preserve nutrients, vitamins and antioxidants. Eliminate toxins, including S.aureus (golden staff) from foods.

B. Infantis

Stimulates production of immunomodulating agents such as cytokines. Bacteriocidal activity in Clostridia, Salmonella and Shigella.

B. Longum

Plays a role in preventing colonization of invading pathogenic bacteria by attaching to the intestinal wall and crowding out unfriendly bacteria and yeast. Produces lactic and acetic acids to lower the intestinal pH and inhibit undesirable bacteria. Reduces gastro issues from antibiotics.

HISTAMINE NEUTRAL PROBIOTICS

L. Acidophilus

Natural antibiotic, enhance immunity, antimicrobial against strep, s. aureus, salmonella, E. coli and candida albicans.

L. Rhamnosus

Helpful in preventing Urinary Tract Infections, protects agains strep and clostridia. Helpful for those with lactose intolerance. Down regulates hypersensitive reactions and intestinal inflammation in people with eczema and food sensitivities

 

HISTAMINE RAISING PROBIOTICS

L. Bulgaricus

L. Casei

L. Reuteri

There are many other probiotics and I know Culterelle  is a very popular probiotic, but after much searching I am unable to determine at this stage if it, or other strains are raising, lowering or neutral. I will of course keep searching.

The products I am using at the moment are :

Jarrow Formulas – Ideal Bowel Support.  Gluten free L. Plantarum 10 billion live organisms.  From iherb. Use my code FUR941 for a discount on your order.

Nutrition Care – Lactobac.    B. Longum 750 million organisms and L. Rhamnosus 14.25 billion organisms. (Must be posted and kept refrigerated, so leave an esky at your front door with a note for the postman if you’re not going to be home). From Kingsway Compounding Pharmacy in Sydney.

I truly hope this helps someone out there. For my part, I feel great getting it out of my head and onto a blog where it might do somebody some good.

Good luck on your own quest, and i’ll keep you posted 🙂

Kitty. xx

Link to my app – https://itunes.apple.com/au/app/emotion-fonts/id779305002?mt=8

 

Autism/Histamine treatments that are working for us

In my last post, I gave a bit of background about realising that something was wrong with my little man.  He does indeed have Autism and Intellectual Disability, but those diagnosis for me, are not answers to explain his behaviour, they are the questions that need answering. So, i’ll give you a quick run down of his behaviours and the conclusions I have finally (after a 10 year quest) come to and what is working.  I will go into depth at a later stage, but I feel I need to get this out there now, because I think a lot of kids are suffering from this.

Fraser started out as a beautiful natured little boy that we had nicknamed ‘the dude’ after the Jeff Bridges character in the movie The Big Lebowski, as he was soooo laid back.  As the years have progressed (he is almost 11), he started to scratch and pinch, then kicking, biting hair pulling which just got worse and worse as the years went on.  Don’t get me wrong, he isn’t always like this.  He is for the most part a beautiful boy, that every one loves, but he can be quite scary at times. We noticed sometimes he was really happy and calm and patient, but at other times he was very agro.  What we did become aware of was that at the times he was agro, he would wet his bed, and when he was calm he wouldn’t. Why? When he was agro, his skin on his face was bad… pimply, blotchy and inflamed.  When he was calm, so was his skin. Why?  When he was agro, he was also obsessive…really obsessive about books, music and movie scenes. When he was well, he was still obsessive, I mean he is Autistic after all! But much less obsessive. Why?  When he was unwell, he wouldn’t talk much. When he was well he used much more language.  Why?  After much trial and error and hours of searching for clues, seeing specialists, paediatricians, naturopaths, homeopaths (of which I am a huge fan),  things still kept escalating.  He was then given a PANDAS diagnosis (what’s one more diagnosis?), but it still didn’t incorporate everything that was going on. At this point I would like to mention that there is one thing that always helps and is a mainstay for us (even though we don’t go nearly as often as we should),and that  is Chiropractic. We are blessed to know THE best Chiropractor, and he has been a constant source of encouragement, support and information for Fraser’s entire life, and we have seen many improvements during that time.  The most notable, was when Fraser was about six months old. Dave (the chiro), gave him three adjustments over a couple of weeks that got rid of his asthma  which disappeared, never to return.  Ever! If your child has autism symptoms, but especially ear infections and asthma, please, please, please consider seeing a chiropractor instead of using antibiotics or steroidal drugs.

Anyway, a couple of months ago, there was a world wide free screening of the fabulous film ‘Food Matters’, I am a huge fan of their other film ‘Hungry for Change’ which are both worth watching if you are interested in health.  I was in bed, watching it on my laptop, but drifted into a half sleep.  They started talking about vitamins and all the different things they are responsible for. As I was drifting to sleep, a professor was talking about Vitamin C.  He listed some of the amazing things Vitamin C does, one of which was to lower Histamine, and PING!  A huge light bulb went off in my head.  I spent all of the next day researching (and most days since then), but in that first day, I found enough info to realise that this was the missing link. He seemed to have high/very high histamine.  To experiment, I gave him half  an anti-histamine (Zyrtec).  What a difference! Within ten minutes, he had settled down, and was so affectionate. He is affectionate normally, but this was something else.  I sent him to school not knowing what to expect, and the note in his book came home with a glowing report that he had participated in cooking for the first time!  We were getting closer to the end of the school year, so every morning, I gave him half an anti-histamine and added in some Vitamin C. 2000mg per day.  I didn’t tell the teacher what I was doing, as I wanted totally objective view of  his behaviour in her notes home to me. Sure enough, the last two weeks of school were exceptional. He didn’t have a single negative incident, and willingly participated in every activity!!!   It was quite miraculous.  Over the course of the christmas break, we have had many chances to catch up with family and friends, and everyone noticed an improvement.  He is sleeping better and longer, talking more (he is mostly non verbal), AMAZING eye contact, and just calmer and happier within himself.

So I will keep posting on progress, as I am waiting for a couple more supplements to arrive from the USA, but here are the basics for now…

High Histamine seems to be genetic, so it runs in families, and tends to affect males more than females.  Schizophrenia an Bi-polar are linked to high histamine as well as other mental illness.  There are very strong personality characteristics in Histadelics (people with high histamine), that are very reminiscent of autistic traits.  High histamine is responsible for many physical symptoms as well that can effect you with or without any type of neurological symptoms.

If you have a child who has been prescribed an SSRI and it hasn’t agreed with them (they sent my son psycho), it could very well be that they are histadelic.
According to all of the research i’ve done, Histadelia can take 6 months to get under control, so strap yourself in and be prepared to wait for the real results…

Before you begin, there is a simple way of testing yourself or your child if you wish to. Give a 50mg dose of Niacin (NOT the flush free kind) on an empty stomach. If you or your child flush at that small dose, is means that you are high histamine. I had a normal niacin flush (red face and feeling warm), but Fraser had an extreme reaction. I mean it was huge! My daughter commented that he looked like an Oompa Loompa as he went bright red, all over.  It actually looked like hives. It was a very big reaction for a little man. Don’t be alarmed if it happens, it will go away in half an hour or so. If you want it to go away quicker, give a dose of calcium which will calm it down. I just give him a crushed up tablet in peanut butter, which is how he has most of his supplements. He has his vitamin c powder in fruit juice.

The following is the list of supplements and the rationale behind each one…

-Calcium :  Pulls histamine from the tissues and into the blood stream.  Dosage : I use a formula that contains Calcium, Vitamin D3 (aids calcium absorption) and Magnesium (must be a ratio of 1:1 with calcium, as they are synergistic.)

-Vitamin C :   Escorts the histamine out of the blood and into the urine to be excreted from the body.   Dosage : 2000mg per day.   Given at intervals during the day of 500mg
-Forksolin (Coleus Forskohli) : To stop histamine being produced from mast cells throughout the body.  Dosage : 2 x 500mg capsules per day with meals. Forskolin is an Ayurvedic herb that does many amazing things in the body.  Do a little research and prepare to be dazzled!
-Vitamin A:  Must be given to stop Vitamin A deficiency caused by high Vitamin C, but also does many incredible things for the body.  Dosage :  I use Nordic Naturals  Arctic Cod Liver oil, which is lemon flavour and quite pleasant. 1 teaspoon per day. This MUST BE IN TRIGLYCERIDE FORM, so the body can actually utilise the nutrients. The cheap oils just won’t work as well, if at all.  The good thing about the Cod Liver Oil, is that he also gets his DHA’s and EPA’s.
-Vitamin B6. I use the active form called Pyroxidal 5 Phosphate or P5P. It goes straight into the blood stream and doesn’t need to be broken down by the liver. The body uses B6 to make the enzyme DAO which breaks down histamine. B6 is also responsible for over 300 actions in the body. Dosage : 2 x 50mg tablets per day.

I hear you saying “Gee Kitty, that sure is a lot of supplements and there is more to come? Can’t I just stick with half a Zyrtec a day?”  Sorry to disappoint you, but of course, as we know, nothing worthwhile is easy! Here’s the clincher…There are four histamine receptors in the body, and anti-histamines like zyrtec only target receptor H1, and possibly H3, leaving the other 2/3 wide open! Plus, there are always side effects with medications (some times they are a necessity), if we can solve the problem rather than mask it, there will be better results in the long term.

I have on order, L-Methionine and a form of B1 called Benfotiamine, which I will be starting in the next couple of weeks. Benfotiamine is more stimming than for Histamine lowering, but it’s something that i’m looking forward to trying. I will also do a post in the coming days about probiotics.  They are an essential tool for kids with Autism, but what most people don’t know is that some raise histamine, some are neutral and some lower histamine, so of course if you think histamine is a problem, you want to make sure you are not using any that raise it.

Kitty xx

Link to my app 🙂

https://itunes.apple.com/au/app/emotion-fonts/id779305002?mt=8

AUTnotISM

Autism is an adventure, a journey, a quest. It is a quest for answers, for peace, for justice and for solutions. I am one of the lucky ones. You see, I was born on January 11th, which makes me a Capricorn. Okay, I feel some of you rolling your eyes already, but being a Capricorn has been a tremendous asset. Capricorns by their nature (for the most part) are studious, industrious, hardworking and very importantly, curious and for better or worse, stubborn.  Curiosity when you have a kid with Autism, or any kid for that matter, is an incredible gift. Without it, the first line of this blog might have read ‘nightmare’, but, my capricornian self, feels an unyielding desire to discover the inner workings of this beautiful child that is my son. So many questions arise from every day situations that other people simply don’t have to think about! Why does he walk on his toes? Why does he only eat brown food? Why does he make funny noises?  Why does he flick his fingers and roll paper into coils? Why doesn’t he like it when I sing? Okay, okay, so as far as that last one goes, he ain’t the only one, but I’m not that bad, although my ‘Lady Gaga’ could use a bit of a tune up. That aside, the answer to all of these odd questions deserve more than a one word answer. Autism should not be the answer, but the question, don’t you think? If you’ve read this far, then you possibly agree. I guess before I venture any further, the polite thing to do would be to give you some back ground on my humble self. There are many of us ‘mother warriors’ out there, and I am just another, except that I am me.

My name is Kathryn, but my friends call me Kitty. I am almost 44, and I work as an aide in a wonderful special school. I am married with two kids and a puddy tat. My fave colour is red, and I have a kooky condition called synesthesia, which means for me, that I hear songs in colour. Now down to the nitty gritty. In 2003, I had a beautiful baby boy.  We called him Fraser, which was the boy’s name we had picked since our Eloise was  born almost 2 years earlier.  From day one, something wasn’t right.  The poor little man cried ALL the time, he came out in a rash on his face, that was eventually diagnosed as eczema (even though doctors said it wasn’t possible in such a young baby). He had psoriasis around his penis (also not possible apparently). He had terrible, smelly wind (unusual for a breast fed baby), he hardly slept and just seemed uncomfortable all of the time. As I write this,  I wish I could go back. Now that I know what I know, I could help him so much, but alas, we can only move forward.  This is where being a Capricorn starts to pay off. I came to the conclusion, as I had done when Eloise went through a short stage of inexplicable crying, that baby animals don’t cry for no reason, or whimper, or whatever they do. But think about it…do baby animals have skin issues, or digestive issues, or get distressed for no apparent reason? No, they don’t! So why would a human baby (humans being a species of animal) behave in such a way? The answer is simple. Without a good reason they wouldn’t. So I set about trying to discover why he had all of these issues.  He was very, very loved and nurtured, so that ruled that out. He was warm and dry, so no clues there, he had milk at his disposal 24 hours a day. So what was it?  The quantity of milk was not an issue, but what about the milk itself…aha! After months of trial and error removing all of the usual suspects (peas, oranges, chocolate), I cut out all sugar and gluten and voila! A baby that, after 6 months, slept his first 5 hours straight! It was a miracle! I kept checking his breathing to make sure he was alive!

Within this time frame, something else happened…we went to the zoo. ‘Cool’! I hear you say, and yes it was indeed cool until we hit the elephant enclosure. You would assume, that a five month old baby boy would be excited to see a huge grey elephant for the first time in his life. His sister was at that age! She toured the whole zoo with her eyes bulging and a permanent smile on her face.  Young Fraser though, took no notice of the this enormous majestic creature hosing himself down with his trunk, just metres away. I watched and waited for him to notice, but instead I noticed something else. Goosebumps. I felt them on the back of my neck and my arms as I slowly and subtly realised that something wasn’t right.

I will leave this post here for now, as I could go on and on. Needless to say, I have a son with Autism, and as it turns out, intellectual disability as well. I have been down many roads on my search for answers and I want to share them. Some things have worked, and many haven’t,  And they’re all worth sharing.  I will finish as I started…Autism, ought not to exist as with many other ‘modern conditions’. Together, we can at least take some steps further. In my future posts, I will tell you about my experiences with PANDAS (not the zoo this time), p5p, kinesiology, homeopathy, synesthesia, Dr Seuss’s Horton the elephant and my personal fave, histamine. Until then, I will leave you with a line from the incredible Stevie Wonder…’when you’re movin’ in the positive, your destination is the brightest star’.

Kitty. xx