This page is by no means comprehensive but it's a few events that I want to record as we progress.
Summer Spoke less and less. More and more disconnected from us and the world. Looking at pictures he looks half asleep in them all.
Xmas We realised he was autistic. See How did I realise my child was Autistic?
January Became aggressive with us. Biting and scratching.
February We started him on zinc and within a few days saw some remarkable progress: He started to look at us again. He started to track birds flying past again. He stopped his constant running long enough to watch a car drive into a garage under a house and to our amazement appeared to think that it was strange. He was so disconnected from the world that it was stunning to see his little face appear to say "Huh... well that was weird!".
Late February ATEC score of 82.
April Some words including two and three word sentences (his speech has gone up and down but his comprehension has visibly improved)
Late April ATEC score of 49!!
June Spontaneously stroked a cat! He'd spent most of the last year utterly ignoring all animals.
October He remembered how to turn on light switches at last (he used to love doing that and could find them and use them all over the place).
December Called for "Mamma" when he wanted help with something. He's never called to us for help before.
January Started full dose of the Walsh Promoter at last! Discovered ACE (Adrenal Cortex Extract) which was utterly game-changing for aggression and meltdowns.
February Said a few more words and also asked to go out and play in the snow: "En annan tf tf" (Swedish and colloquial; literally "Another chuff chuff" referring to the train noise we make when pulling him in the sledge). Wanted to play on a slide and on swings again (he used to love them but since he regressed he has only had brief periods of not being too hyperactive to appreciate them).
An annual visit from some old friends clearly showed that he was different to a year earlier; He made eye contact with them when they all arrived and the next day hugged one of them around the legs! Not a chance of that in 2018.
On two occasions he looked straight up at the sky when I said "Can you see the moon?" and both times he couldn't see it for a second but then spotted it immediately that I pointed at it. A massive step forward!
April Much more understanding of what we are saying. Much more interest in animals (real and cartoon!). More vocalisation (but not so many words yet). Sadly bad flu (just high fever, extreme tiredness and slight cough for three days) left him with a wrecked gut which then became the first real constipation he's had. Resulting in multiple trips to the regional paediatric emergency unit, who were excellent. We should have had Oxy Powder on hand just in case (easy to hide in food) but it's saved us now at least.
May Due to a confluence of very unfortunate events we ran out of the Walsh MT Promoter for a week and a half (after eking out a half-dose for the prior fortnight) and he crashed. Aggressive. Poor sleep. No focus. Not speaking. No eye contact. Horrible. He "woke up" within a day of restarting it. Eye contact was back, lot of vocalisting and some two and even three word sentences. The Promoter really is vital!
Then he suddenly wanted to feed himself again. He's not wanted to even hold a fork since he regressed (he was starting to feed himself two years ago). And then we tried for the nth time to clip his nails (when he wasn't sound asleep!) and... he let us do it without freaking out! As long as he was also allowed to watch a cartoon on the phone ;)
It's too early to be sure but some time in May he appears to have stopped arching his back ("extensor pattern") when he is upset. That is an infantile movement pattern which ASD kids can take a very long time to "integrate".
June We realised that some time in the last few weeks he's stopped his main "air piano playing" stim.
Even more helpful than ever with putting on clothes.
Was thirsty at a hospital visit so he went and grabbed a disposable cup, went to a sink, filled it up and drank!
Another short period off all supplements and the Walsh MT Promoter (as we work on the ongoing digestion crisis) resulted in horrible regression again. Extremely aggressive. No concentration. Almost no words. No eye contact. But one day back on the vital few supplements (like Zinc, Promotor, B6 and also Citrulline for biting) and he's already coming back to us. We've seen regression every time we've washed out the supplements, over and over again now, but each time it just amazes me the stark difference in him. And particularly the difference when washing out and restarting the Promoter has been remarkable.
A tiny but significant event: My wife always asks him to turn on the light as they go into the washing room, but for some reason she asked him before they got in there, as they were in the adjoining room. He stopped, looked around, found the light switch for that room, and turned on the light. He's never turned that light on before. It sounds trivial but it shows two things: He is clearly understanding what he's being asked and, more importantly, he was able to generalise the concept of turning on the light into the context of the other room, and work out what to do. That is very, very encouraging and some of the most subtle thinking we've seen from him since he regressed.
July He is now taking more and more notice of what we say to him and even following instructions to not do something which he wa about to do.
The fact he understands us again (he could understand us before he regressed two years ago) is magical to see. I've read people whose kids never got back to that state and remained as if they were two years old. It's heartbreaking. But the fact that he's also holding back from something he was about to do, simply because we've said so, is even better.
We also had the best game since he regressed: He threw something off the veranda, I threw it back. He laughed and threw it off again. We did this about twenty five times! Not only is that the first time I've had such a cooperative game with him it was such a long duration for him to concentrate on something.
Finally we had an absolutely conclusive hearing test, which he cooperated with well and seemed to understand what was required of him at last. Great to have that fully confirmed and not need yet another visit to the hospital!
September Sudden, huge increase in eye contact. In fact he's been climbing up me and wanting to stare into my eyes and touch my face. It's coincided with restarting Atsas olive oil at a rate of only 2.5 ml a day. It's pretty remarkable stuff.
During meals he's always either run endlessly or, if I really want him to sit with us (and maybe guests) I have to sit him on my lap and show him a cartoon on YouTube to distract him from running (without the video he struggles and freaks out until I let him run). Three days ago, before I could sit down, he sat in my chair and started to eat his stew (he started eating with a spoon for himself spontaneously a few weeks ago too). Every meal since then, he's done the same thing. Happily sitting there till he finished (and then grabbing my hand to take me to the cupboard to get his new favourite food: prunes!). Amazing and wonderful to see a behaviour simply slot into place like that.
October At last we seem to be getting a handle on the constipation and painful wind from the gut infection back in April. PHGG and Higher Nature Citricidal (aka GSE - this brand does not taste bad!) have been absolutely key.
His eye contact went up hugely with Atsas Extra Virgin Olive Oil (EVOO). Hugely. Then another amazing leap the day we switched to Pure Encapsulations Adeno/Hydoxy B12 caps (tasteless, emptied into food - also good for sleep). Massive difference. So much more aware of where he is and what's going on.
And stair-gates have become a pure formality which he ignores whenever he feels like it!
November Unsteady but incremental gains in awareness and yet more solid eye contact. We've added in the Cleanthis EVOO and that appears to be helping.
January Ramped up the B12 (Pure Encapsulations, Adeno/Hydroxy - mentioned regarding sleep here) and saw even more alertness very quickly. A lot more engagement with us and the world around him. He was playing with some frozen puddles and said "Iiii!" (ice) and then it started to snow and he looked up and said "Nuh!" (snow!).
February Many, many small changes. A general "waking up". Increased understanding of what we are saying. Tons of eye-contact and interactions with other adults. No major milestones, just a slow but fairly steady increase in awareness. It closely correlates with the ammonia we have got under control (concentration improved and aggression decreased) and the potassium we've added (constipation and sleep improvements).
May At the end of February we slid fully back into the hell of his gut problems but appear to have got a handle on them at last using the SCD (Specific Carbohydrate Diet). It is widely used with great results in Autistic kids but is not a universal fix by any means. (See: http://breakingtheviciouscycle.info/ and also with more focus on Autism in particular: http://www.pecanbread.com/ - but also, get and read the book. Badly in need of editing though it is, it's still the best introduction to a "simple but hard" intervention that might massively help). He continues to show small improvements in comprehension and tiny improvements in saying some words but it's ineveitably frustratingly nonlinear!
May I've missed updating this page for much longer than I'd thought!
Slow progress over last summer but progress. The SCD did help and we are mostly on it still with a notable exception (which, strictly speaking means we are not on it at all!).
Then we started with a new doctor in the USA and she suggested using Mega IgG2000 or SBI Protect (or capsules) (they are the same thing) at a higher dose than we'd tried before (a full scoop of SBI Protect or at least two caps of Mega IgG2000). That has been a total game-changer for his gut. Unbelievable. So much happier. Better sleep and of course that brings improvements in itself.
The problem of getting nasty tasting supplements into him became acute when he started to refuse any food where he could detect something strange had been added. That meant no AKG, Pteridin 4 or B6. He fell apart. So did our sleep and therefore our lives. It was dreadful. So we really dug our heels in: Eat some chocolate with the nasty vitamins on it first thing in the morning or no breakfast. That's the deal.
It was hell for five days but each day he buckled earlier and earlier. He held out an astonishingly long time - literally turning his nose up and walking out of the room when offered treats because he knew we'd insist on him eating the vitamins first. Which we were absolutely amazed at. Partly because of his ability to resist but also his clear comprehension of the situation.
But after those few days he accepted it. After a month he was just fine with it and after two months he started to eagerly ask for the nasty vitamins and chocolate (pulling a disgusted face as he ate them) because he knew he'd get a quarter square of chocolate as a final reward!
And yes, the chocolate is the notable exception to the SCD diet. It's 70% cocoa, high quality chocolate. We tried a higher cocoa but it's just not nice enough and he starts to get really grumpy about eating the vitamins again.
With the ability to get those supplements into him, consistently and at the dose he needs he has made a lot of progress. Much more calm and more focus.
Currently, we are starting Dr Stasha Gominak's RightSleep program which I'd highly recommend looking at (very, very briefly and believe me this does it a disservice: high dose B vitamins for three months, normalise D3)
June The Gominak protocol really has seemed to bring benefits. Better sleep (which is just key!) and better concentration. His preschool teacher remarked on how he was concentrating better after a few days and she's no idea what we're doing. Much better receptive language too. Hard to know exactly what he understands but he certainly understands a great deal now.
Also we've started on Itraconazole and that brought gains within a few days (I've heard from several other parents who have seen the same thing). More attempts at speaking. Some spontaneous but I'm also using basic PRT (Pivotal Response Technique - the "Handbook" is well worth a read even though it's aimed at practitioners. The last half of the book is purely technical but the first half has some truly excellent ideas). Which means I am finding things that he wants to do, to get him to use words. When I say "things" I mean; when he wants a snack from the snack cupboard (which is constantly!). So, he has to try to say what he wants. Any attempt counts, no matter how bad. As long as it's an attempt (this is a core PRT concept). He has started making the right sounds for mango, fig and mubberry. But once he made an "eeee" sound and I said "Oh, you want "fig" (it's got an "ee" in Swedish) and he actually said "No, no. Eeeee!" and I realised he was asking for gravy! (Another "ee" sound in Swedish). He's never corrected my understanding of what I said before.
July We are continuing on the unsteady but definite upward trajectory driven by the Gominak Protocol! This has been the first birthday (his sixth) since he was 1 year old that wasn't depressing for us.
He's actually making progress.
Huge receptive language gains and even some speech. The other day, when he left for preschool, my wife said "See you!" to me and he said "ee ooo". She said "Yes, we'll see pappa later" and he said "See you dadda". It's just about the first English he's uttered. 😳
He was up in the night and I told him it was time to go to sleep. He took my hand, kissed it, took me to my bed, and said "Där dadda" (basically, "go there dad" in Swedish).
We sometimes try to eat dinner outside in the summer but it's hard as he'll play on the veranda but then make a mad dash for the lake. A few nights ago I saw he was about to go (I can tell from the grin that comes over his face) and sure enough he started just as I shouted at him to stop. He stopped! I told him we'd go but I had to get his swimming shorts. He sat on steps while I went inside and not only got his shorts but dashed upstairs to change into mine (and his mum hadn't needed to say anything to him). He was still there when I returned. That's nothing short of miraculous.
November
Had a really, really tough time since August. The gut problems (painful gas and constipation) came back with avengence and none of our usual tricks worked. To make a very long, sleep deprived and horrible story short; Jarrow Colostrum Prime Life has turned out to be another of our game-changer supplements. Unreal. Improvements in a day. Slowly and unsteady improvements for a couple of weeks before we were almost back to normal. I'd had amazing results with it earlier in the year when my gut was extremely upset for some reason but I'd balked at giving it to my son since it's dairy derived and our UK doc was always extremely worried about dairy due to his genetics. However, he's doing amazingly on it. 2-3 caps a day. Up to 4 when we started (ramping from 1/4 though, of course!)
What caused it? There are three possibilities:
He started drinking lake water from the lake behind our place 🙄 (just can't get him to stop).
We tried AOR Probiotic 3 against suspected ongoing C. diff overgrowth (many people carry C. diff and are fine. It's only a problem if it gets out of control).
One I did not suspect until I spoke directly with Dr Gominak and the flair coincided exactly; We dropped off the first three months of the RightSleep protocol, going from 1/2 a cap of Now B50 to a tiny pinch .
Gominak says that dropping too fast can sometimes send a gut into chaos and nothing that usually works to calm it down will work anymore. You have to raise the B vits. Well, we did raise the B vits and that fixed the sleep which also had gone nuts within a few days of the drop but that didn't fix the gut. So, that protocol appears to have even more power than I'd suspected!
Currently I've not had a chance to digest and write up the notes from my meeting with Dr Gominak (and I hardly remember it since my son had woken us at 01:20 that morning and we'd not got back to sleep... so having the meeting at 17:00 the next day was... hard! But I wasn't going to miss my slot).
January Just before Xmas we tried using Biodicin LSF. We've used the original Biodicin drops and they were helpful with both his gut and mood but the LSF has been amazing. Within a day of starting them his aggression fell away completely. I've been logging aggression (along with many other things) daily since early 2018 and he has never had a run like this (it's in a spreadsheet with automatically applied colours (conditional highlighting) so I can scroll through quickly and see any patterns). His gut has been much better too but I am not about to get too excited that we've had a major breakthrough there just yet... I am not sure what it's doing but it's very obviously doing something!
February Ammonia has caught me out, badly. I reduced the ammonia support some months ago (hard to get into him and the Pteridin 4 is ludicrously expensive) and all seemed well so I didn't think about it further. However his behaviour slowly, slowly deteriorated and I stupidly didn't make the connection. We've got the ammonia solved now, right?
Finally it dawned on me when I was reading a post by Alex Zaharakis (thank you Nayela!!) where he mentioned a feature of ammonia excess that I've never heard of before but absolutely makes sense: Sudden night wakings.
So, bumped up the support again to a full AKG cap, and a full Pteridin 4 cap (we'd kept him on a full Citrulline cap) and day by day, over a period of a week and a half his behaviour improved. The night wakings reduced and stopped (for now...). The aggression declined and declined. The sillies reduced. But most of all the horrible panicked howling that he'd keep up for an hour and a half when: waking, coming inside our house and the grandparent's house, on not getting his way etc etc etc. have reduced until yesterday he only did it when he woke and today he's been fine so far... It's been a steady improvement with every day that we've increased the support again.
My page on it all here.
March Huge, huge problems with sleep and meltdowns. I was saying it was the worst we'd seen since last year for several days before my wife finally worked it out: It was the same cause as last year! Constipation! And not ordinary constipation, the "sludgy constipation" (AKAK fecal loading) that's plagued us since 2019. Following the three days of enemas using a strong enema (Klyx) following our paediatrician's protocol (3 days of enemas regardless of whether you think you cleared it on day 2).
Then he was:
Much, much happier after the first enema (huge, poo!).
Only to become very, very unhappy overnight (and he was awake from 11:30 onwards.. Howling and running. Which is what he does when something, anything isn't right)
Then much happier after the second enema (huge, huge poo!)
Only to be a little unhappy later in the day (fixed with a bike ride for ten minutes).
Very happy on day three (and then not so happy about having the enema, which produced only a normal sized poo).
The change in him is astonishing. He is a different child. So happy and loving. Attentive and more vocal.
June A huge change! Just huge! Massively down to the gut balancing from Alex Zaharakis's recommendations but the most distinct turning point has been starting him on a probiotic: HN019 which has resolved constipation. HUGE change. HUUUUGE!!
Bifidobacterium lactis HN019 found in a single strain as "Daily Bowel Regularity"
Shown to decrease transit time in two studies
If you have access, this may be interesting: https://www.probioticadvisor.com/advisor/Bifidobacterium+lactis+HN019/strains/ as well as: https://www.probioticadvisor.com/advisor/Intestinal+Transit+Time+-+Slow/conditions/
If you have any constipation issues you have to try this!
September Higher dose 299v has made a huge and rapid difference. We were using a 10 billion CFU dose (from Jarrow) but then found a 30 billion cap from Solgar (that works out cheaper too). Within a day of starting that he was more calm and the effect held and very slowly improved across the next month.
I don't know what it's doing but when I spoke to Robyn Cogger about it she said;
> "It's great for up-regulating IL10 action in PANS kids. And yes, sometimes the dose isn’t high enough to mitigate that cytokine cascade!"
November Higher dose S. boulardii (Klaire is has the critical strain) has made a huge difference! Practically everything is dose dependent. But everyone falls into the trap of thinking that "I have been giving that but it's not helped". How much were you giving?? But that doesn't mean that more and more is better. You can give too much of anything.
December We finally got him taking capsules!! Taking Capsules Is Doable And It's An Absolute Game Changer!
January Big changes! Because he now takes capsules he's taking enzymes at every meal (Read Enzymes For Autism by Karen DeFelice hugely informative book). He's also taking a good dose of S. boulardii and Lactobacillus rhamnosus GG (also sold as Culturelle but far cheaper from Foods For Gut). Plus a pure Tocotrienol form of Vitamin E (not the usual form, which may actually be counterproductive. We're using TocoPure - also available from Amrita Nutrition)
January At last we're getting a little fish oil in (via Carlson Minis). We also started Jarrow Alpha GPC (choline) and Jarrow PS100 (phosphatidylserine - aka PS). Unfortunately the PS100 results in major sleep onset insomnia. Maybe the Alpha GPC does too but I stopped it immediately and pressed on with the PS100 because PS helps sleep in smaller doses (I dropped to using a tenth of a cap from a whole cap). It brought a lot of babbling, some words and for the first time ever he said two things when I asked him what he wanted. He never replies. Always clams up. But I've had to stop the PS as the insomnia is not tolerable. I'll start it again after I try the Alpha GPC alone.
August It's been a very hard time since Easter when he suddenly got very bad gut pain (burping) again and things went badly wrong as a result. His sleep went to pieces, he was incredibly nervous with major separation anxiety from us but mainly my wife. Worst of all he therefore didn't want to go to school and be away from her (and he used to love school!). He became extremely upset and we've ended up both having to be with him for school for only one hour per day. Which has been crippling (not least for our ability to earn any money).
However... I know of someone who found that two courses of Alinia (Nitazoxanide) has made the most incredible difference to their child's gut. They apparently had the best poo they'd ever had their life for several weeks afterwards. They later triedd Rifaximin, and it made things slightly worse (including their child's burping).
Note: Alinia is a synthetic pharmaceutical drug - it has nothing whatsoever to do with garlic; it's not Allicin!
Which was a huge clue for me: Alinia should have taken care of any protozoal parasites (i.e. not helmins; worms - but microscopic parasites). Rifaximin should have removed any SIBO (it's an antibiotic that is very poorly absorbed but should degrade before it reaches the colon - so it shouldn't affect the critical microbiome there). So... surely what's likely to be left is a fungal overgrowth (SIFO Small Intestinal Fungal Overgrowth)? So I started our son on some Now Foods Candida Support and... the burping declined rapidly. Within a couple of days he was fine and he's been fine for two and a half weeks. Which is a record, ever since the burping started in 2019 (I know that for sure because I log it).
From my friend's experience, I would highly, highly recommend any ASD child to have a prospective treatment with Alinia. It is used as a matter of course in ASD kids by Dr Klinghardt and all the doctors he's trained. It's a remarkable drug. Generally well tolerated. It's mainly used as an antiprotozoal antiparasitic but it's also got anti-viral action and is also strongly active against many bacteria, including Clostridia and H. pylori! (I've also heard very good things about Ivermectin. It's an anti-helminthic which also has anti-viral action (which obviously made it famous during Covid). Extremely well tolerated and safe. Also with almost no taste, unlike Alinia. Note though, that Ivermectin is not a substitute for Alinia - they have different effects).
My friend was prescribed this dosing for Alinia:
200 mg, 2 X a day for three days (their child was 8 at the time - so that tallies with the dosages laid out here)
Wait ten days.
Repeat.
The repeat is to knock-out parasites that happened to be in egg/cyst form during the first course.
A couple of points to note with Alinia
Alinia can be very constipating. Make certain you have something immediately to hand to manage that. Oxy Powder is the best and most gentle thing we've ever found.
The die-off can be terrible, the first time you use it! None of us had a problem but a good friend felt terrible when she used it the first time, herself. Really, really awful. To be really cautious you could do a single dose and wait a day before doing the complete course.
Some things to note with Rifaximin
Rifaximin is not supposed to reach the colon. However, the first time our friend dosed it at half the standard dose (100 mg not 200 mg) their child constipated badly. That shouldn't be possible because the colon is where the stool forms and the bulk comes from bacteria grown from the food. If that bulk isn't forming, to me it seems evident that the Rifaximin is reaching the colon. So they halved again to 50 mg and there was no constipation. So they continued on that dose.
As further evidence that it reaches the colon in some cases, I also know someone who saw huge, huge shifts in her child's microbiome (as per lab results) from using Rifaximin (and they were not good shifts!).
January There haven't been many highlights to write about but a steady increase in cognition. He's been having dried liver capsules (Nordic Kings - cheaper than Ancestral Supplements but probably only available in the Nordic countries!).
Zenbiome COPE seems to have really, really calmed him though. He's just lovely.
Remembering to give some potassium (1/8th teaspoon Potassium Citrate power - approx. 200mg) with the evening meal certainly improves the chances of him sleeping through still.
The 299v strain certainly helps his gut.
Jarrow QH Absorb (Ubiquinol) really seems to help cognition (really important to give that with K2! Otherwise it's probably not metabolised well)
February We tried Agamatine Sulfate and got some good results initially. We'll have to try again later though: https://sites.google.com/view/the-journey-back-from-autism/agmatine-well-worth-a-trial
April Please, please read up on peptides. I am certainly no expert here but there are so many stories of children being helped hugely by them.
Here are some starting points:
Rebecca Fergusson's original post on KPV that broke the ASD internet: https://diaryofrecovery.com/2024/02/06/kpvpeptide-2/
FAQ to go with the main KPV Peptide blog post: https://diaryofrecovery.com/peptides-faq/
And one on Larazotide: https://diaryofrecovery.com/larazotide-acetate-info/
There's a world of possibility with them.
September Finally out of nappies!! It's a long story but we are at last done with the nappy changes that have lasted a decade and we were afraid may never stop.
He has made continued strides in cognition and is pointing to letters on a letter board to communicate words. He's a much happier and less symptomatic child than he has been but there's still the danger of burping causing pain and the associated havoc. It is much reduced but still not resolved.