histadelia – AUTnotISM

Folate Schmolate

When I was pregnant with my munchkins, I took care of myself and did all of the things I was supposed to do. I didn’t drink alcohol, I tried to eat healthy (not easy with morning sickness), I took my giant fish oil capsule, which, for a girl who doesn’t like the taste or smell of fish, was no easy task at the best of times, but with morning sickness it was almost impossible. Blahhh. And of course, I took my pregnancy multivitamin…with folate. Of course, we all know now that low levels of folate when a woman is pregnant can cause neural tube defects in your new born, which is something that none of us would risk, especially when taking a simple folate supplement can avoid that all together. All pregnant women are told to take folate for this reason, and of course, we do it for our children and ourselves. To avoid problems in women who don’t supplement, the government require food and beverage manufactures to ‘enrich’ their products with folate and thiamine (vitamin b1). Thiamine is added to avoid a nasty condition called Beriberi which is caused by overconsumption of carbohydrates and depletion of B1.

We are all aware for the most part to some extent, that food is not what it used to be. We know this don’t we? As an example, take my beloved Sauvignon Blanc, or Merlot. Were they traditionally made with the preservatives that they contain now? Nup. They have not always contained sulphites, as alcohol IS a preservative. Has meat always contained the growth hormones that it contains now? Nup. Cows and sheep all managed to just grow just fine on their own, thank you very much, if they were given grass, water and sunshine. So what we have, is a situation where food and livestock have been manipulated over time to be vastly different than they used to be. I remember an ad growing up that said ‘bread is the staff of life’ and for hundreds of years this may have been true, but now that the bread is enriched, it may be the exact opposite for a large percentage of people.

That problem is that approximately 45% of people can’t break down this chemical into the form of folate that the body can use, so it then becomes a toxin. Did any government check with the population before they loaded up every product that contains flour with these extra ingredients? Nup. It’s really a cheap and easy win for the government (I really don’t want to sound like a conspiracy theorist, but i’m getting fed up with this crap). They pass a bill saying ‘put folate into flour that is used for baking and babies won’t get spina bifida’. They look like super heroes. They just need capes and a leotard with a great big ‘F’ on the front. We of course would let them think that the F stands for folate 😉

A lot of people are affected by a Single Neucleotide Polymorphism (SNP) of the MethyleneTetraHydroFolate Reducatase gene (MTHFR). A what? Big long words for gene mutation. What is this gene mutation? I have written about this before in my post ‘You MTHFR’. MTHFR is a gene and an enzyme that breaks down folate into the usable form ‘l-methylfolate’ which then is used for several cycles that included methylation (detoxification) and the B4 cycle (neurotransmitters). In a percentage of people, the mutation is such that they are unable to break down the folate into a usable form, so not only are they low in folate, but are now more toxic because the supplement then becomes a burden that the body has to deal with. If you’re on the pill the news is not good. The pill depletes folate in the body, and makes a bad situation worse. Gluten has been the big buzz word for the last decade and I couldn’t agree more that there is waaaay to much gluten around, but this flood of folate has been overlooked and could be causing a lot a people a lot a problems that they don’t realise. What if, in taking my supplements and eating enriched foods, I have inadvertently helped to create or exacerbate another condition???? High histamine, or histadelia, is linked to this gene, and can run in families. Is it possible that I have contributed to my own histdelic state, causing severe morning sickness and bombarding Fraser’s growing body with harmful levels of folate and hormones that my body could not break down or detoxify, which have in turn caused some or all of the issues he has today? It seems not only possible, but very likely. He had hallmarks of histamine issues from the time he was a month old, such intestinal discomfort and eczema on his face, which with good ol’ hindsight seems quite obvious now. So from where I stand today, looking back over this chain of events, it seems painfully obvious that I HAVE in fact at best, made things worse than they would have been, and at worse, caused a situation that might not have been. It might not be as cut and dried as that, but it might be. I am not one to look back with regret though, as regret serves no purpose in this instance. I keep my head high and look forward. I look forward to a time when scientists are able to stop a worm hole collapsing in on itself and making time travel possible. Only kidding….sort of.

Are you wondering what the hell this has to do with Autism? Well, my investigations constantly bring me back to a figure of 98%. It is estimated the 98% of people with Autism have a MTHFR gene mutation. That is a pretty staggering number. The list of health conditions linked to this gene don’t stop at Autism. It is really mind blowing. I won’t overwhelm you with it here, but it’s worth Googling or Binging or Yahooing.

So, solution? Come on Kitty, what do I do then? For Fraser I get Oat sour dough that does not contain folate from the local health food shop. Yes it’s expensive, but I think of it as an investment in his health rather than an expense. The thing about it is, is that he is better on this bread. Of course the other option is to make your own bread. I mean from scratch…even the bread mixes at the supermarket already contain folate. Argh! Be aware of everything that has flour in it from breads to biscuits to pastries. It’s everywhere! Avoid packaged foods as much as possible and add in fresh fruit and vegetables as much as you can. Not easy with a kid with Autism! I guess the thing is to not be too stressed. Just do what you can and be aware that it could be causing problems. The best thing to do if you can is get a test for the gene (doing it in the next few weeks), and you can supplement with the active forms of B Vitamins. I use a website called iherb which have very affordable supplements and shipping. Just type in ‘activated b vitamins’ and you’ll have a range to choose from that will suit your budget. It pays to do this slowly as it will begin a cascade of detoxification processes that could be uncomfortable. I will post on this in the coming weeks. Otherwise, do the easiest thing…stay away from processed food and stick to food naturally high in folate. Ah, if only wine were high in folate 🙂

Take care,

Kitty. xx

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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

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

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