Once anyone starts to make claims that
some autism is treatable, people respond in different ways. Those applying what has always been taught
in medical school, that autism is untreatable, will either think you are making it all up, or worse, you are
some evil person taking advantage of parents in emotional distress.
The very few people who read the research
about things like metabolic errors and intracellular signaling may well take a
different view. Also the oncology/cancer researchers who themselves think about
sub-types of disease that are induced by specific signaling pathways (like RAS-induced
cancers for example), may well see the sense in experimentation like that in this blog.
Medicine does indeed say that autism,
Down Syndrome and ID/MR are untreatable; however current science does not
support this. Your local doctor applies medicine;
he is likely totally out of his depth when it comes to where science is in 2016.
My posts are just my take on the
science, I am well aware that some clever neurologists have
looked at this blog and think it is all fantasy. The doctors who have a child with autism and read this blog tend
to look from a different perspective and with a much more open mind. Once you find one therapy that is truly
effective, bumetanide in our case, then there can be no turning back.
There are all kinds of diets, supplements and therapies promoted by various people, I wish them all well.
The problem any future science-based autism clinicians will have is that they inevitably get mixed up with other types. In the US they already go to the same autism conferences, which surprises me. People then think, "Oh well if Professor X is here from Ivy League college Y, then everyone must be legit". Big mistake. You need to be on really top form to separate out all the pseudoscience, and on occasion you may get it wrong.
The problem any future science-based autism clinicians will have is that they inevitably get mixed up with other types. In the US they already go to the same autism conferences, which surprises me. People then think, "Oh well if Professor X is here from Ivy League college Y, then everyone must be legit". Big mistake. You need to be on really top form to separate out all the pseudoscience, and on occasion you may get it wrong.
Probiotics
I used to be a skeptic of probiotic bacteria,
that is until I was prescribed some little glass vials about a dozen years
ago. I had some side effect from an
antibiotic prescribed for an ear infection.
I still recall the ENT doctor calling out (not in English) and asking
what to prescribe for the GI side effects.
When I took his prescription to the pharmacy I received a pack of glass
vials and a small saw blade. You used
the saw to cut the neck of the vial then you added water to the white fungus
growing in the vial and poured into a glass of water, which you then drank.
It most definitely worked.
Even today when I tell my doctor
relatives in the UK that probiotics work wonders for diarrhea, all I get is strange
looks.
So I am already sold on the fact that
probiotic bacteria can do great things for stomach problems.
I spoke to a friend in Denmark this
week who has been ill much of the year and finally his problems have been
diagnosed as stemming from Ulcerative Colitis.
His first symptom was actually a blood clot. It turns out that inflammatory bowel diseases (IBD), like ulcerative colitis,
increase your risk of blood clots.
So I told
my friend to read up on VSL#3 and Viviomixx, which do seem to help IBD, and
also to read up on melatonin in the IBD research.
Probiotics and Inflammatory Disease
Looking at immune health more
generally we saw how the probiotic Miyairi 588 is used to produce butyric acid
which can improve immune health. This is
why cost conscious farmers put it in their animal feed to produce healthier,
faster growing animals.
We saw that an alternative is just to
add sodium butyrate to the food. This is
done is both livestock and some humans.
Butyrate is an HDAC inhibitor and so is thought to have epigenetic effects.
Butyrate is an HDAC inhibitor and so is thought to have epigenetic effects.
Probiotics and the Brain
You might be able to convince your
doctor that a probiotic bacterium can be good for your stomach, but would you
convince him that it could be good for the brain?
I must admit I also would like to see
some scientific evidence, beyond anecdotes - even my own anecdotes.
So finally today’s featured scientific
study:-
There is increasing, but largely indirect,
evidence pointing to an effect of commensal gut microbiota on the central
nervous system (CNS). However, it is unknown whether lactic acid bacteria such
as Lactobacillus rhamnosus could have a direct effect on
neurotransmitter receptors in the CNS in normal, healthy animals. GABA is the
main CNS inhibitory neurotransmitter and is significantly involved in
regulating many physiological and psychological processes. Alterations in central
GABA receptor expression are implicated in the pathogenesis of anxiety and
depression, which are highly comorbid with functional bowel disorders. In this work, we show that
chronic treatment with L.
rhamnosus (JB-1) induced
region-dependent alterations in GABAB1b mRNA
in the brain with increases in cortical regions (cingulate and prelimbic) and
concomitant reductions in expression in the hippocampus, amygdala, and locus coeruleus, in
comparison with control-fed mice. In addition, L. rhamnosus (JB-1) reduced
GABAAα2 mRNA expression in the prefrontal
cortex and amygdala, but increased GABAAα2 in
the hippocampus. Importantly, L.
rhamnosus (JB-1) reduced
stress-induced corticosterone and anxiety- and depression-related behavior. Moreover, the neurochemical and
behavioral effects were not found in vagotomized mice, identifying the vagus as
a major modulatory constitutive communication pathway between the bacteria
exposed to the gut and the brain. Together, these findings highlight the
important role of bacteria in the bidirectional communication of the gut–brain
axis and suggest that certain organisms may prove to be useful therapeutic
adjuncts in stress-related disorders such as anxiety and depression.
The study is interesting because it shows
that a bacterium can modify GABA subunit expression in the brain, but when the
vagus nerve is removed the effect is lost.
So it is pretty likely that in humans the vagus nerve is the conduit to the brain,
as has many times been suggested, but here we have some pretty conclusive supporting
evidence.
For a less science heavy explanation
of the study:-
Belly bacteria boss the brain
Gutmicrobes can change neurochemistry and influence behavior
I did a post about the vagus nerve a
while back and there is an easy to read article here:-
Viva vagus: Wandering nerve could lead to range of therapies
My old posts:-
The Vagus Nerve and Autism
Cytokine Theory of Disease & the Vagus Nerve
Conclusion
Individual
GI bacteria have very specific effects.
In people with neurological dysfunctions the possibility genuinely exists
to delivery therapies to brain via the gut.
This might have been seen as pseudoscience a decade ago, but now it is part of
science, but not yet medicine.
Many other clever
things going on in your gut. The long
awaited CM-AT pancreatic enzyme therapy, from a company called Curemark, is now entering its phase 3 trial
(thanks Natasa). Click below.
Blüm is the study of CM-AT, a biologic, for the treatment of Autism.
The Curemark
lady, Joan Fallon, has collected numerous patents regarding various mixtures of
pancreatic enzymes and even secretin.
Secretin was an autism therapy that was written off many years ago, but
is still used by some DAN type doctors.
Some
comments on this blog from parents of kids in the early CM-AT trials are
supportive of its effect.
Pancreatic
enzymes (e.g. Creon) are already used as a therapy for people who lack
pancreatic enzymes and many people with autism have taken them.
Curemark have
never published any of their trial data which annoys at least one of our
medical researcher readers. If you have
so many patents, why not share your knowledge?
Peter,I don't know why my son didn't respond to b.gastrus, don't know if was a histamine reaction or his yeast problem,what do you think?could he have a positive response to l.ramnhosus or b.protectis?regards,Valentina
ReplyDeleteValentina, my son has a very positive reaction to Protectis, but the when I have him Gastrus he had a negative reaction that lasted a few days. Clearly the bacteria have a very specific action. I expected Gastrus to be better than Protectis, given we have lots of allergy issues.
DeleteSo it is worth experimenting, with any of the widely available (ie safe) probiotics.
Ok, I'll try with Protectis,I have 2 bottles at home.
DeleteL rhamnosus caught my attention some time ago when I read articles about how good it was proved for OCD like behaviours and even found as effective as Prozac. Here is the reference: www.ncbi.nim.nih.gov/pubmed/24257436
ReplyDeleteI am a believer of probiotics affecting behaviour and I even trialled some myself and had results. Protectis for example relieves my anxiety while gastrus doesn't give me a good feeling.
I also trialled for myself zinc as I have a mild restless leg syndrome and it really helps from the first pill. An adverse effect is that it makes you very hungry and want to rest. I think it would be effective for anorexia neurosa.
Hi Petra Petra,
DeleteL.rhamnosus does seem interesting and unlike you, I was not a believer in probiotics as the ones commonly prescribed to me or son along with antibiotics did not seem to do anything, or rather made us more uncomfortable. L.rhamnosus was a component of these bacterial mixes. But now I am viewing things in a different light and would probably trial single strain interventions, observe and select the most effective. Also, now that my son has become more expressive, behavioural and physiological changes might become more discernible.
And, I too suffer from rest leg syndrome though infrequently and it usually got aggravated after activities like trekking (long gone are those days) but it may happen otherwise also. My child wants me to pat the sole of his feet hard before sleeping and I was wondering if he might also benefit from zinc. We are physiologically quite similar. So will surely try this also.
Could you share your continuing observations on bumetanide and L. reuteri. Amazon failed to deliver biogaia protectis so might as well trial bioamicus.
Hi Kritika,
DeleteI intend to trial L. rhamnosus and found a single strain product with the commercial name Culturelle GG (ATCC 53103).
Since I don't know what causes my son to exhibit OCD like behaviour, I can't be sure if it is going to work or bring adverse effect.
Biogaia has been a very good intervention so far, but I need to find out what happens with other well researched strains.
Bumetanide ameliorated my son's cognitive issues and helped with better control over meltdowns.
One side effect we are trying to deal with is dehydration and consequently I had to lower the dose to 1mg/d until I make sure he drinks lots of fluids.
I only had 11mg zinc once and had an impact on me, I wonder what happens to children that take big amounts of zinc.
I think our sons have something in common, this sole patting desire. He has a massage machine and use it to vibrate his feet. He also asks my husband to press his feet hard, probably proprioception dysfunction.
Thanks Petra Petra for your inputs. My son has been assessed as having propioceptive issues..fairly common in autistic individuals, apart from other sensory integration problems.
DeleteRegards
Petra, my daughter needed her feet pressed hard whenever she was upset. My arms used to ache! She always needed it when she was in discomfort, whether mild or a complete meltdown. Reading your comment, I suddenly realized that she has not needed it at all since Sytrinol I think. Definitely nothing since low dose clonazepam. Wow. Something seems to have corrected itself.
DeleteRG the tangeretin in Sytrinol is a P2Y2 antagonist.
Deletehttp://onlinelibrary.wiley.com/doi/10.1002/ddr.10203/abstract
Purinergic receptors including P2Y2 play a role in neuropathic pain. Neuropathic pain in feet is well known.
http://www.ucl.ac.uk/ani/GB's%20PDF%20file%20copies/CV1402(proofs).pdf
So perhaps it is the Sytrinol that is helping.
Peter, this is quite amazing, don't you think? This is such a significant change, and one would think I would have realized it sooner, but we have been enjoying our daughter so much these last few months, all the things she is able to do now.
DeleteSince ibuprofen has never done much for her other than reducing fever, I had thought that the success of Tangeretin for us was its being a P2Y2 antagonist.
I had also not thought of the foot discomfort as neuropathic pain.
Thank you RG, Peter, for this clever connection.
DeleteRG, do you give Sytrinol every day, or just when you suspect a build up?
As for low dose Clonazepam, I feel reluctant to give the second dose in case of irritability. I wonder, how do you administer during the day, for example, every 7 hours would be ok?
Hi Petra, the connection was all Peter's!
DeleteI give Sytrinol twice a day, the effects are cumulative. When given regularly without missing a single dose, it stops all allergy flare ups. A few days of doing one dose per day results in irritability and slight reddening of the eyes, which are symptoms of allergies here. So, for my daughter 1 capsule twice a day is the minimum dose.
Kritika,
ReplyDeleteAs I see it, at least for Asperger's, bad behaviour is a "cry" for help as in those moments they lack the means to express it otherwise.
It's like being in a war in Afghanistan, trying to defend themselves, when mum says "have a shower before you get dressed". It's not that they don't know that it is good to have a shower and wear nice clothes, it's that they lack the motivation for social skills when they are in a constant fight/flight mode. Fear overwhelms them and they zone out, it's utterly disabling.
The disease performs a slow and painful lobotomy, not the treatment.
Sorry if I interfered with your concerns, which I absolutely find justified and sincere towards your son.
Yes, Petra Petra, I do understand. I really appreciate your views. I was only ruminating, as I am sure every parent with a child, typical of atypical does, as to what is the threshold (specifically referring to behavioural issues), when you reach out and resort to use of medicines to ease things out.
DeleteI do not know abput my son, but with my thoughts spiralling out of control, I am certain of ending up with a self performed lobotomy
Offtopic, but looking at polyamines again (I have mentioned them before) and in particular spermidine might be worth trialing:
ReplyDeletehttps://www.sciencedaily.com/releases/2016/10/161003102242.htm
This study was done on flies and dealt only with cognition (fly cognition that is) but there are a growing number of studies showing big improvements in various cellular systems from boosting spermidine levels via diet in various mammals. Young people in principle have what you might consider "high" spermidine levels, but what I find interesting is that these synaptic deficits were rescued by increased spermidine that had nothing to do with its more studied function in life extension and that is autophagy (spermidine is also studied heavily in cancer research as cancer cells seem to like to leech spermidine and other polyamines from neighboring healthy cells).
To get the amount of spermidine when generously scaled from a mouse (in one particular study I looked at) to a human being involved eating about a cup of wheat germ a day (that is a lot) and that assumes most of the spermidine is digested relative to the amounts digested via a mouse (maybe more maybe less). I have also seen "wheat germ oil" but I assume the processing destroys much or most of the spermidine, plus it is quite expensive relative to just eating wheat germ that also has lots of protein, good fats, and choline. Only downside to wheat germ (besides people with true digestive issues with it) is it tastes kinda bad and you don't want to heat treat it either.
Since cognitive boosters to cognitive deficits are one of the core areas of exploration on this blog, I thought this might be a novel area of exploration for anyone who might want to help figure out how to make this a more practical intervention (unless you can get your child to eat a lot of this wheat germ modified peanut butter).
Interesting Tyler, it looks like cheddar cheese and even green peas are a good source. But you would need to eat a lot of it. I wonder why it is not sold as a supplement. It has very positive effects in studies.
DeleteTyler it looks like cooking green beans actually increases spermidine content. So there may be ways of making some tasty child friendly food, with high spermidine content.
Deletehttp://www.academia.edu/23467286/How_Cooking_Process_Can_Influence_Polyamines_Content_in_Foods
I think my daughter might be self medicating here, and I never realized it. Green beans are her most favorite food of all, and I cook 300gms for her every single day. She cannot go more than a day without. Thank you Tyler, Peter.
DeleteI don't know about Europe, but the FDA banned polyamines as a "supplement" for very dubious reasons a while back because they are a component of foods/herbs (which means it is treated as a drug) rather than an extract of it (which is legal under a different law).
DeleteYah I know really stupid stuff, but that is America these days.
Grean peas (not green beans) supposedly has high spermidine content as well as Natto (Japanese fermented soybeans).
Nevertheless, Peter this is a very interesting paper because heat treating green beans seems to change the polyamine contents and I know that the most practical sources of putrescine come first from grapefruit juice and secondly from orange juice (which are generally palatable or at least orange juice tends to be with most people). Perhaps cooking these juices might do the job (would need to consult an expert on this subject to do some tests as this is pure speculation).
Tyler, there is a new clinical trial starting in Germany:-
Deletehttps://clinicaltrials.gov/ct2/show/NCT02755246
They are giving a polyamine supplement 3 times a day. The trial has exclusion criteria including "Gluten, histamine or wheat seedling intolerance".
I wonder are they starting with wheat germ or wheat seedlings/grass? There are wheat grass supplements and you can buy wheat grass or grow it.
I did email the researchers about their polyamine capsules. If they reply, I will let you know.
I will guess there is a 95% chance they will email you back that they are using wheat germ extract (probably specially prepared so that the spermidine is not destroyed). I have looked into wheat germ extract and have yet to find a source that cannot guarantee the polyamines have not been destroyed in processing.
DeleteMost wheat germ is used for feeding farm animals (due to its nutritious content) and not used in human foods due to its fat content which means it will not keep for an extended period of time due to the effects of the fats going rancid, so that is why it is separated from flour and considered a waste product of wheat processing.
Also, with respect to mTOR downregulation, resveratrol and spermidine have been shown to work synergistically in this regard, so this might be something else to look into for people that have PTEN mutations.
Also offtopic, but germane to recent discussions about dopamine on this blog:
ReplyDeletehttps://www.sciencedaily.com/releases/2016/10/161003093240.htm
This paper discusses a hot spot in the brain of paradoxical activity in autism research called the fusiform face area which is a pea sized part of a larger brain structure on the bottom back part of the brain called the fusiform gyrus. What is interesting is excess dopaminergic signalling seems to be a general issue of research in autism for a long-time and there also happens to be research that shows how in autism irregular activity in the fusiform gyrus can drive hyperactivity in the amygdala (which tends to be enlarged in autism). Many if not most people with autism do not like looking at the faces of others as they tend to find the experience overwhelming at times. Perhaps dopaminergic irregularities (D1 receptors tend to act as an amplifier for glutamatergic signals) in the FFG in autism are creating the same kind of "sensory overload" via face processing that often seem to happen in some of the primary sensory cortices (visual cortex hyperactivity for example is correlated with autism severity).
Hello RG,
ReplyDeleteIf I remember right, you have been using L.rhamnosus GG with you daughter and had a good experience. Do you use it as part of daily regimen or only during GI episodes?
And biotin deficiency will reflect in the quality of hair and skin. Can we interpret it the other way round i.e. if you have healthy hair and skin you are not likely to be deficient in biotin?
And taurine, which I presume you are giving with magnesium for the calming effect? Actually I am enquiring about amino acids as wanted to assess their effect which can be tested quickly because of rapid response when on target. Theanine and taurine were on my list and the minerals, potassium and magnesium too, before I trialed bumetanide.
But as Peter suggested to someone, high dose vitamins may disrupt the balance of other vitamins. This stopped me in my tracks and I feel I should intervene to the minimum extent possible with treatments which give significant and sustained improvements. And the moment one types in any supplement and drug, he or she is flooded with information supporting its use as the next miracle chemical and an equally discouraging accounts of its deadly side effects.
Do give your opinion as I do not really want to end up running every half an hour to medicate my child.. and I cannot because half of the day we are on the move.
Hi Kritika,
DeleteI use Culturelle only during GI episodes, one capsule a day for about three days. I have wanted to run a longer trial as I thought it reduced ocd, but I am not sure. My husband has always had GI troubles and he loves it.
Biotin did nothing for us. I kept it in at around 5mg for a long time before giving up on it along with the other b vitamins. After reading here about the biotidinase deficiency, I tried it at 8mg, and my daughter was agitated and irritable on it. Personally, I am glad to be rid of the b vitamins, they have been a huge amount of trouble for us, the b12 shots, purchasing benfotiamine, p5p and all the others separately and then dividing them up and dosing them individually, all for nothing. I know they have been very good for others.
I give Magnesium taurate only because it is a form of magnesium that doesn't cause the runs. It also seems to do the job well. I am not giving it for the taurine because that part of it never seemed to have any particular benefit, in fact, for calming the magnesium citrate was much better.
I don't supplement amino acids inspite of my daughter's amino acid profile being quite aberrant. She is low on many. They have too many follow on effects and I am a bit wary of them. I think it is much easier to treat with pharmaceuticals than nutraceuticals. The only ones I have wanted to try are carnitine and creatinine. In the past I have supplemented vitamins and a few minerals like zinc, molybdenum and selenium, all at normal doses except for vitamin D. I didn't see anything from them. The vitamin D I started at a high dose because she was low and it had an immediate great effect, though it wore off after some time. I also tried vitamin A (post by Maja here) and saw some very good results on the same day, but made the mistake of adding in vitamin d after two days because her levels were already very low and I was afraid of driving it down further. She had a seizure that day and I was not sure if the vitamin A and/or D played a role in it. I haven't tried them again yet.
My daughter's profile and trajectory has changed for the better only since starting Verapamil and other recommendations per this blog.
Tyler, once my neuroligist told me that my son's case was rare inside the spectrum.Clearly,he experiments sensory overload via face processing,probably due to his epileptiform activity, in spite of the fact that visual cortex hyperactivity is correlated with autism severity, he has a HFA diagnose.Valentina
ReplyDeleteValentina, sorry if this sounds a little ostentatious of me, but to be specific I was referring to "primary visual cortex" whereas the FFG is considered part of the secondary visual cortex and as part of the "ventral stream" which is a forward network of brain areas that determine "what" things are in the visual field, while the secondary visual areas closer to the top of the head are part of the "dorsal stream" which is involved in perceiving movement and "where" objects are in visual space. I perhaps gave a confusing analogy because I was specifically referring to the early (sensory) areas of visual processing as a comparison to presumably dopamine influenced activity in a downstream area (the FFG), even though they are both obviously considered part of the visual system. The primary visual cortex is comprised on a small patch in the very back of your head while running along an artery that goes down the middle part of the brain starting at the back of the brain towards the front for several centimeters. Where and to what degree the sensory floodgates are left open (thalamus, primary visual cortex, downstream visual areas, etc.) in the visual processing of the autistic brain probably varies a lot from person to person (just my guess based on everything I have read).
DeleteTyler, thanks for clarifying this,I know that this dysfunction appeared from the beginning and is irreversible, but, is there anything I could try to improve his global visual processing, which would be the best aproach based on all you have read?Valentina
DeleteI don't know if what I presume to be a lesion of sorts (just inferring from what you said your neurologist said) is actually irreversible. I read very recently about a man who had a small lesion due to a small stroke in a similar area of the brain called the visual word form area which rendered him unable to read or recognize words properly. Besides the scientific insight gained from his rare condition, he was able to eventually read again with enough therapy hypothesized to reroute word recognition via other networks in the brain. It is thought many people with autism use similar methods of compensation for various deficits they have in which they use less efficient methods of processing to get around dysfunctional brain areas that are not functioning properly because of being miswired in utero or else from some kind of environmental insult after birth.
DeleteThere was a study I read several years ago looking at improving facial recognition in adults with autism where they essentially would use slowly morphing faces from one face to another as part of the therapy (not mentioned in the study). The therapy part was mentioned in the press release which I could not dig up. Here is the paper:
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0074541
Here is another good paper I have bookmarked on face processing in autism:
http://www.sciencedirect.com/science/article/pii/S0896627313007630
Thanks Tyler, his dificulty not only is in processing faces, I think that his sensory processing disorder has to do with color, light and moving images. The result, hyperexitability, and when this join with a sore throat or viral infection, the problem gets worse.Valentina
DeleteL Rhamnosus is said to have impressive health benefits but I read some rare case reports of bacterimia and sepsis.
ReplyDeleteI don't really trust my son's immune system as I saw he is susceptible to infections lately.
Parmigiano Reggiano cheese has this strain. I thought I should add it to spaghetti and see if I have any behavioural changes, for a start.
Trying to rescue some of my son's excessive fear and anxiety, I saw this paper which I found interesting:
ReplyDelete[The correction of the manifestations of a neurosis-like state in white mice by using the vitamin complex Aekol.]
It's an antioxidant containing vitamins a,e and k3.
There is also this paper about Aekol:
[Prophylactic effect of antioxidant Aekol on behavioral (phychoemotional) disturbances caused by chronic stress in rats.]
So here is some very new information to throw into the "causes" of autism debate:
ReplyDeletehttps://www.sciencedaily.com/releases/2016/10/161006143610.htm
What these researchers found is that a massive number of inhibitory neurons migrate to the frontal-orbital part of the brain (this area tends to be an area of the frontal cortex that is greatly enlarged in humans relative to other apes) in the first three months of life AFTER BIRTH. Prior to this discovery it was thought pretty much all the structural of the brain was done in utero, but in humans this does not seem to be the case.
I am sure this research will reignite the debate as to whether autism is always caused in the womb or whether post-natal environmental insults in the first year of life can mess with this migratory push of inhibitory interneurons to the most frontal part of the frontal lobes.
What is also very interesting but will have to wait (probably for quite a while) is that testing to see if this process has been interrupted in post-mortem donated brains of deceased individuals with autism for these specific types of inhibitory interneurons as pretty much all brain cells tend to have a unique genetic signature throughout the brain (i.e. if they find these cells in the wrong part of the brain, then it suggests this grand march of interneurons in the first months of life has been interrupted).
My first thought was that this would correlate exactly with how so many preterm babies or infants with health problems at birth, which have to remain in the high stress NICU environment for often months at a time with minimal amounts of human contact, are found to have such an extremely high rate of ADHD, ASD, etc a bit later on in early toddlerhood. Sterile environment, no gut bacteria. Then add in those early doses of hep vaccine they give in the NICU and then so many others at their first wellbaby and whaddya get??? Oh thats right, an epidemic.
DeleteMKate
Apart from the intensive medical intervention part, pre and post natally, I have a feeling that somewhere the deprivation of sensory exposure, the kind that comes from interaction with nature and the alteration of internal biochemical mileu due to modification of natural diurnal variations, external and internal biome, influences of aromatic compounds, all might be creating complex changes in functioning of our brain and bodies.
DeleteInterestingly, behavioral problems are not limited to human beings but domesticated animals and pets are also displaying signs of anxiety and obsessive compulsive disorders.
So they do not make humans and dogs like before anymore.
I read a new paper today that discusses an amplification process in the fetal brain, presumably to boost learning between weakly connected brain circuits:
ReplyDeletehttps://elifesciences.org/content/5/e18816
In normally functioning adults, the thalamus gathers sensory information, filters it, and then presents to the cortex a reduced amount of information for further sensory processing. What these researchers found out is that pre-natally the thalamus instead acts as an amplifier to boost learning so that the circuits will be wired together in a strong enough way to be able to handle the stream of sensory information they will receive post-natally. I find this interesting because this pattern is common with researchers training some types of artificial neural networks but that is another topic of discussion. What is interesting and relevant here with autism is that there is much evidence suggesting that in idiopathic autism, something during development in utero goes awry and evidence largely points to inflammation being the driving factory whether it be from obesity or viral infection or chemical environmental insults to the mother, etc. Perhaps, this "switch" in the thalamus from being an amplifier to a dampener is a large part of the problem in development (there is plenty of research on the thalamus not gating sensory information properly in autism). Perhaps drugs and/or interventions that specifically targeted the sensory areas of the thalamus or the parts of the thalamus that do a lot of the filtering such as the TRN (Thalamic Reticular Nucleus) would have a strong acute effect at reducing sensory issues and perhaps improve cognition as well.
Tyler, would be a drug that could target thalamaus sensory areas or the altered switch? This drug would be almost the cure for many, like my son. Valentina
DeleteTyler, how could I get more information in this subject? do you know if there is a drug that could target the TRN that do the filtering? Valentina
DeleteWell I was speculating about this connection which of course does not necessarily make it true. Drugs that selectively target specific brain areas are hard to devise because they often depend on the drug being able to be very selective for a specific receptor as well as the receptor only being in that specific part of the brain (otherwise you get side effects) as well as the body.
DeleteYou can look up the Wikipedia or Scholarpedia entry for Thalamic Reticular Nucleus for a brief description.
Also, sensory processing is very complex with respect to the thalamus. For example, in both vision and touch, you have a pattern where the thalamus first gets the sensory input from the brainstem, then filters it and sends it to a primary sensory cortex (vision is called V1 and touch is called S1), then they send some of that processed input in the sensory cortex back to a different part of the thalamus which then filters it some more and then sends that input to what is called the second sensory cortex (V2 for vision, S2 for touch). If anywhere in this chain of events something goes wrong, you are going to have sensory problems and making sense of the world.
So the point I guess is that you not only would have to have a drug that targets the thalamus, but you would need a drug that targets the right parts of the thalamus (called nuclei which are defined as a group of neurons that have a common functional role).
Tyler, Peter,
ReplyDeleteThis may sound transcendent, but for me it's common sense. It can't be a coincidence that L reuteri and L rhamnosus, strains being researched in autism, at least in this blog, are also used to treat vaginal infections.
As I think Peter has pointed out several times before, there are many different "strains" of L. Reuteri and L. Rhamnosus, many of which seem to have opposite effects of each other in terms of the byproducts they release metabolically. Also, there is an average of a single mutation for each time a bacteria undergoes binary fission so you really never have the same exact species of bacteria after culturing it for a while.
DeleteI know kefir which we have made homemade in the past (it is a bit of chore like walking a dog so we have not done it for a little while now) has L. Rhamnosus as one of its major species, though which strains are common in kefir I really have no idea and probably differ greatly based upon where you got your original kefir grains from.
Is there by any remote chance any possible cause of autism that a father can be held accountable for.. the extended autism phenotype?
ReplyDeleteIt's so scary how the needle points to the mother everytime. Maternal obesity, infections, stress, attitude. We should be handled so delicately with tons of tlc as our health, physical and mental seems to be of paramount importance in designing the fate of our progeny.
I sometimes wonder about the malnourished, poverty stricken mothers, or those we with HIV or tuberculosis or venereal diseases or simply those with lack of access to medical care who have prolonged difficult labours with high chance of hypoxia or injury to the child during delivery. It would be interesting to investigate prevalence of neurological disorders in kids born under such circumstances.
Paternal age is associated with higher chances of de novo mutations. There is also recent research (though not tied to autism) that the lifestyle factors of the male ancestors (especially the father) can be passed down several generations via micro RNA's in the sperm with respect to smoking and obesity (there may be more but that is all I am aware of) in causing deleterious changes to the long-term health of the offspring.
DeleteIn utero changes to the baby from its maternal environment is of course the responsibility of the mother, however, in most cultures the husband has a strong effect on the stress level of the mother as well as how well she chooses to take care of herself while pregnant (i.e. the husband discourages the wife not to smoke, do drugs, etc.). Of course in western societies, telling your wife she needs to lose weight before getting pregnant will quite often leave you with no wife and no baby at all.
Hi Tyler,
DeleteConcept of what symbolises female fecundity varies across cultures ..of course you are aware of that. In traditional or rather societies experiencing food scarcity, a well endowed, rather fat, woman is considered an epitome of fertility.
This is fast changing though, and the way female fitness, read beauty, is viewed has altered in direct proportion to import of calorie rich Western diet and spawning of Mac Donald's, in the developing world.
I was never obese, never gained more than a few kgs during the course of my pregnancy and none of the mothers that come to the therapy center I go to, are obese. What I am trying to say is that it's not prudent and probably too simplistic to link individual parental traits to autism although a healthy weight, diet, mental status is always very important.
Epigenetic changes in male sperms, likely due to exposure to environmental toxins has been linked to early signs of autism in the child. And these changes can occur at no less than 193 sites on the DNA, if I remember right. Paternal age and obesity which you have already mentioned, as well as certain asocial traits in extended families from both sides have all been linked to likelihood of child developing autism. I suspect that researchers can statistically correlate every possible variable to autism, once they set their minds to it.
And in India no matter how obnoxious a male is, one thing he is assured of as a birth right. Fair, slim, convent educated young girl.
Well I am from the United States and 35% of men are obese and 40% of women are obese and 70% of women are overweight (the differences in the sexes are probably even more extreme because this is based on BMI which does not take into account that many men have a lot more muscle than average while women almost never have lots of additional muscle weight).
DeleteAnd even though obesity and its complications are strongly linked to autism in many studies, as best we know now there is no root cause of autism so there are plenty of slim and trim women around the world who have children with idiopathic autism. It is just my thought that much of the rise in autism in the west (especially the United States) is directly associated with fitness factors in the mother (and perhaps the father too).
Tyler, I think there are many triggers of autism and you are right, weight is likely one of them.
DeleteIn my case I am 5ft. 5in tall and 110lbs. My husband is 5ft 10in and 165lbs. We are not big people. Also interesting is one of the other risk factors: maternal age. With my first son (the one with autism) I was 32 when I had him (not on the older end of fertility). I feel in my case it had to do with something I inadvertently was exposed to during my pregnancy. My second son was born when I was 40 years old (this is at the tail end of what would be considered by most to be a window for fertility). I was extremely careful during the pregnancy due to my experience the first time. He is not only fine, but extremely social with a big /warm personality and super smart.
In the end, we as parents tend to dissect our history (genetics, exposures, age/weight, etc...) because this is such a complex disorder and presents itself to such varied populations of parents that finding a common thread is so difficult.
--Christine
As I see Lactogyn probiotic has 1 billion living bacteria and seems too strong both for me and my son.
ReplyDeleteYou can feel the different types of bacteria, as if Lrhamnosus makes you too hyperactive and somehow exhausted, while Lreuteri makes you sociable and sentimental. The final feeling is that they don't work well together as they push you to the edge.
In my son , once again I've managed to reduce stereotypy but this is always accompanied with agitation, fortunately with reasonable reactions.
It has failed to make him fearless and reduce his kind of anxiety and I think that the fact that we didn't have bad consequences was thanks to Lreuteri.
Maybe Lreuteri Rc-14 would also help some people with autism.
Hi Petra,
DeleteI know that your son is high functioning and therefore quite different from my daughter, but wanted to mention anyway that her anxiety and looping thoughts have pretty much disappeared completely in the last few months since low dose clonazepam, acetazolamide, potassium and egg yolks. I actually am not able to recollect a single anxiety episode since June. Recently, we added mirtazapine and that has taken it even further in that she seems to have lost an inner fear/inhibition that would make her tentative about going places and trying new things and reluctant to approach people. I don't know if this makes sense, but it was as if before she let life come to her and reacted to it, while now she is stepping forward and making active choices. We are seeing this in her classes and her teachers are commenting on it. The dose at which mirtazapine works for us is very low at less than 2mg. 1/4th of a 15mg tablet.
Thank you RG. Once again you've been really helpful. I'll keep it in mind. If it's a low dose it might work better for my son as well.
ReplyDeletePetra, tomorrow I will be getting the 2mg mirtazapine compounded. Over the weekend I am going to try an even lower dose, maybe 1mg and see what happens. You see, at 3mg, 5mg etc it keeps her completely awake, no sleep at all. Right now, at approx 2mg (1.875), it puts her to sleep most days after two hours. Since the tablets are too small to cut them beyond eighths, I have compounded them and am going to try at a range of lower doses to find the most effective for sleep and cognition. Will keep you posted.
Deletecan i ask how much does your daughter weigh? did you pick the side based on her weight or just trailing? usually this med is given right before bed to help with sleep, do you give it to her at another time?
DeleteI give it at night. I trialled it primarily for sleep, and it seems to work at 2mg the best so far. Anything higher keeps her awake. Moreover, at 2mg we are seeing very good cognitive benefits. This link provided by Agnieszka and Peter was very helpful:
Deletehttp://thelastpsychiatrist.com/2009/01/treating_insomnia_with_less.html
Btw, it takes about 2 hours to take effect.
RG., I don't know how relevant should this be but I'd like to mention that when I was in my late teens, I developed high eye pressure and treated with Diamox. My ophthalmologist, who happens to be my uncle, told me that I was really lucky that never again have I developed eye pressure as most such patients do.
ReplyDeletePetra, this is interesting, because before starting Diamox I was going to take her to the ophthalmologist and since then have forgotten about it since I don't see her pressing her eyes and having headaches anymore. Thank you for this, I will have her eyes checked.
DeleteHi RG,
ReplyDeleteCan you tell me why you chose Mirtazapine as your SSRI? Just wondering as it seems less prescribed than others such as Prozac, Zoloft, etc...
Also, are you using Acetazolamide like Bumetanide? Are they similar? Just wondering since my son is taking Bumetanide.
Thanks so much!
--Christine
Hi Christine,
DeleteI chose mirtazapine for sleep issues primarily. The low dose clonazepam and the acetazolamide seem to have taken care of the anxiety. The Remeron seems to take the other two across the finishing line.
We are using acetazolamide along with Bumetanide because it seems to extend and increase its effects. My daughter also has seizures and I tried it for its action on KCC2. As it happens, it has significantly improved apraxia and aphasia resulting in better speech, attention and response in classes and therefore learning faster and better. Hypotonia is rare these days and she has good energy so it sort of indicates that she may not have a mitochondrial disorder. I am completely convinced that if she had been given this combination of verapamil, bumetanide, sytrinol, low dose clonazepam, acetazolamide and mirtazapine along with mct oil and egg yolks, when she was 4 or 5 years old, she might have had a neurotypical developmental trajectory. Mind you, my daughter at every evaluation is classified as moderate to severely autistic.
If you search under Diamox on this blog, Peter has brilliant posts and a lot of detail.
Has anyone tried Low Dose Naltraxone for anxiety?
ReplyDeleteIt is perported to block opioid receptors, it also was effective at blocking the reception of opioid hormones that are produced by the pituitary and adrenal glands, including endorphins and enkephalins (specific types of endorphins that occur at the body’s nerve endings and act as transmitters).
I am desperate to help ease my son's anxiety and am looking for anything beyond the usual SSRI's as they haven't helped my son -- we have tried 3 different types.
--Christine
Christine, my husband has been taking both LDN and BioGaia Gastrus to good effect.
DeleteMy daughter had severe anxiety in 2014. Verapamil brought this down considerably. It was very effective when dosed acutely for anxiety, and partially effective at preventing anxiety episodes. I think there was at least some part of her anxiety that was provoked by allergies because Sytrinol brought it down quite considerably. The clincher of course was low dose clonazepam with the Diamox on top.
I wish your son the best, anxiety is horrible.
I forgot to add the role of potassium and magnesium. I give my daughter 400mg potassium citrate along with 400mg magnesium taurate once a day. This has eliminated auditory hypersensitivity as well as other sensory issues such as aversion to haircuts. It has also helped her calm down enough to be able to lie still with eyes closed and try to sleep.
DeletePeter and RG,
ReplyDeleteThank you for your feedback RG -- I really appreciate it!
I read Peter's blog about Diamox and it sounds like it has the potential to really boost the effects of Bumetanide.
Sorry for all of the questions, but I really value your opinion and find this site extremely valuable.
1. Peter, I don't see Diamox in your polypil. Just curious as to why?
2. My son has been on Bumetanide for about 2 months now and I haven't seen any noticeable effect. He has been suffering from either allergies or a long lasting virus almost the entire time. This has caused major vocal OCD, increased anxiety and disruptions in his sleep.
3. I have received and read lots of information on this blog that I think can be helpful but I guess I am a bit overwhelmed and confused as to the order in which I should apply the interventions.
-I would like to continue the Bumetanide while I address the allergy.
Plan: Son is staking Zyrtec. I contacted the Dr. to see about trial of Verapamil but haven't heard back yet. Alternative is Quercetin.
-- Would you add in Diamox right now to see if it boosts effects of Bumetanide or hold off?
I had previously mentioned he is taking BioGaia Gastrus which I know didn't work for Monty, but seems to be very helpful for RG's daughter. Should I continue the BioGaia during allergies?
Also taking Mag/Pot 2x/day
NAC seems to be useless during this allergy/virus. Will continue again once under control.
Would you add in ibuprofen or sytrinol right now?
Thank you so much for your direction. I would like to try the low dose clonazepam as well, but with my son's doctor I have to approach these interventions one at a time and get him comfortable with them. My hope is that he agrees to Verapamil.
--Christine
Diamox seemed to cause reflux in our case, but is problem free for others.
DeleteIt is wise to try each intervention one at time, so you know what really helps.
Allergy really inteferes with otherwise effective interventions. So it is best to do your trials when he is in good health.
Christine,
DeleteI also use Bumetanide+Diamox.
Diamox has a complex mechanism of action, beyond chloride neuronal concentration regulation as Bumetanide.
Diamox added to Bumetanide brought further improvement in my son: cognitive and beyond. One thing which worries me is stuttering/speech disfluency that increased in last months and I can't exclude it's drug related. But there can be other reasons as well. Anyway I started to use Diamox as severe migraine prevention in my son and he needs it for this.
Did you show basic science papers about Verapamil or other calcium channel blockers in autism to your doctor? Re Verapamil safety in children: papers on pediatric migraine can be helpful. It is recommended in much higher dose for migraine in children than most people use for autism.
There are no studies of Verapamil for allergy, but other drugs of this class (calcium channel blockers) are occasionaly used in chronic urticaria and this condition is histamine driven.
My word of caution is that Verapamil has a potential for interaction with Clonidine, personally I would not use them together.
Is Zyrtec helpful for your son? Did you try different antihistamines, including short trial of the old generation eg. Benadryl?
Also allergologists quite often prescribe higher doses of antihistamines (rather those of new generation) than officialy approved.
I did not use LDN in my son, but could see first hand the effect of this treatment in another child and anxiety reduction was the main effect I noticed.
My son rarely has anxiety issues, they are temporary so I don't have a personal solution for this. I wish you all best to find help for your son.
Hi Agnieska,
DeleteI see that you use Diamox for your son's headaches and beyond.
My son told me that he feels as if there are two propellers in his brain working constantly at their full potency.
I thought this may be a kind of intracranial hypertension headache and trialling Diamox would not be a bad idea at all.
Hi Petra,
DeleteDiamox mechanisms of action are well described in this article on mountain sickness (Fig.1).
https://www.ncbi.nlm.nih.gov/pubmed/26294748
It is not open access, but you can find it on the Sci-Hub if it's available in your country.
In short, apart from decreasing cerbral edema with Diamox and chloride neuronal regulation they suggest: NrF-2 and HSP upregulation, increased IL-1RA (antiinflammatory cytokine), reducing ROS, cytoprotection, enhanced BBB integrity and also less trigeminal nerve activation and pain. Well, there are some good reasons to try.
In my son the idea behind Diamox was to prevent severe migraines as it works in a condition called hemiplegic migraine caused by calcium channelopathy (CACNA1A).
It worked well for headaches and very well for "autism".
I hope you'll find a relief for your son. I feel for him about these propellers feeling, it must be so difficult.
Hi Christine,
DeleteSytrinol has pretty much eliminated my daughter's allergies. They only rear up when I miss a dose for a few days. The minimum needed are two capsules per day, one in the am and another in the pm.
I have not tried BioGaia with my daughter, its my husband who takes it.
Agnieszka,
ReplyDeleteThank you for taking the time to respond and for all of your suggestions/direction, etc...
When you were referring to stuttering and speech disfluency were you speaking of your son? My son also has a very bad issue with this. It has gotten worse over the last 6 months (although we have had bouts of it in the past). It is so painful to watch because it looks like the words are literally stuck and he appears extremely anxious and uncomfortable. Just wondering because I may have mentioned it somewhere on the blog and didn't know if you were referring to that or your son. Are you wondering if it could possibly be Bumetanide causing it?
I did send the research on Verapamil from this site to my son's doctor, but he feels more comfortable prescribing Monteleukast. I was able to get him to trial Bumetanide (currently on), Baclofen (didn't work) and Memantine (worked for awhile and have discontinued) so he is pretty good about going off-label. He can get a little bit frustrated with my suggestions so I have to pick my battles. If Monteleukast does nothing than I will try again for Verapamil.
Thank you for the warning about Verapamil and Clonidine. My son takes Clonidine (calming/sleep) so I would have to discontinue.
I will give Benadryl a try. Zyrtec is ok.
Thank you for your feedback on LDN too! I really don't want to go back to the SSRI drawing board as we have tried (Prozac, Lexapro, Celexa) with minor results for anxiety.
Beta Blockers like (Tenex, Propranolol) didn't work either.
Thanks again and I wish you the best as well. If you think of anything else, I am always open to suggestions.
Warmly,
Christine
Hi Christine,
ReplyDeleteYes I was referring to stuttering in my son. He's always had speech issues but few months ago stuttering increased much during febrile illness and at the same time unfortunately his long time 1:1 aide-teacher was changed at school all of a sudden. Some people think it's stress related speech disfluency. It happened during Diamox treatment so I cannot exclude it's somehow related. But all neurologists I asked did not think so.
He's been on Bumetanide for more than 2 years with no issues apart from hypokalemia, resolved on potassium supplement. I don't think stuttering is related to Bumetanide or Bumetanide/Diamox interaction. Receptive language got much better in my son on Bumetanide.
I am sorry to hear about your son struggling with speech fluency. Have you seen the old study on vit. B1 (thiamine) for stuttering in children?
It is well described here:
http://www.casafuturatech.com/should-stutterers-take-vitamin-b-1/
Re Verapamil: it was my own decision - thanks to Peter's blog - to use it, but later we found a neurologist with interest and vast knowledge in channelopathy and autism at tertiary center. Not only he did not discouraged me from continuing this treatment, but Verapamil effect in my son was one of key reasons he referred him for calcium channelopathy genetic testing. Maybe this way of thinking could convince your doctor to prescribe it?
I thought about Benadryl as a short OTC trial to find if the problem is indeed allergy related. It might be some other antihistamine as well. Ensure good potassium blood level when using older generation antihistamines along with Bumetanide.
I used Benadryl occasionally for mast cell/allergic flares, but at the moment the best solution imho is low dose Mirtazapine. At very low doses it seems like its main effect is blocking H1 histamine receptors.
I recall when my son was on low dose Clonazepam he developed a sense of self confidence. Maybe this treatment could be helpful for anxiety as well?
Agnieska,
ReplyDeleteThank you for sending the study on B1 and stuttering. It seems worth trialing once my son's allergies are dealt with. He is already taking the magnesium (which they suggest). Seems like a pretty inexpensive/benign intervention. Thanks again for all of your suggestions!
--Christine
Hi Peter, I know that my probiotic is dosis dependent,but this could be possible in low doses? I have been giving him 2 sachets per day for two weeks. But as the days went by, he started to experiment a regression. After de discontinuation for 5 days, he was improving,he counted with the persistence of the strain. Today started again with 1 sachet and the improvement is notorious. Could it be possible even that handling low doses, de diference between 1 sachet and 2 are so notorious in my son, or as the days pass the bacteria accumulates and is counterproductive in some level reached?Valentina
ReplyDeleteIt dose seem that you can have too much probiotic. Alli, the reader who started the subject of probiotics uses her probiotic for 3 weeks and then has a week off and then starts again. She has been doing this for over a year. I also found with the probiotic I use that after a couple of months the effect gets lost, so I am also making a pause.
DeleteIt seems that it is difficult to find the correct balance to get the real benefit. After a week off, I will return to 1 sachet for 3 weeks and 1 week off and see what happens. Valentina
DeletePeter and Valentina,
DeleteFor my son, five drops of bioamicus twice a day seem to work best. Three times a day made him uncomfortable and left him not in the best of moods. As far as exact dosing is concerned, I do not think too much of precision counts..we are talking of these organisms in at least millions and then they seem to multiply inside the body and probably their rate of colonization, interactions with native microbes and subsequent elimination through overcrowding by indigenous gut flora will also be subject to lot of varusbility.
Also if someone is using the drops, one can immediately realize how inexact a single dose is. Drop size varies significantly and not very easy to maintain consistency as the solution is pretty viscous. I do not think it really matters either, within a particular minimum-maximum limit. Frequency of dosing seems of a greater significance.
And I have always maintained that behavioral (seperate from cognitive and pathological issues) improvements are the most difficult to sustain and respond best to intermittent treatments.
Sorry Kritika, but I have to disagree with you there. It probably just means that you have not yet found the right treatments for your son. In our case, verapamil did about 70% of the job eliminating negative behaviors, and then Sytrinol came in for much of the rest. This is a sustained response, and removing any of these for more than a couple of days leads to behavioral deterioration.
DeleteRG,
DeleteI think I should have worded my comment differently.
Firstly, of course, absence of a sustained response in case of my son implies that I have not found the right treatment for my son, as yet. Whether such a treatment exists at present is a very big part of that 'as yet'. Again, of course, I do not in any way believe that any of Peters suggested interventions or those which might develop in the future will not be able to deliver consistent, sustained behavioural improvements.
Secondly, behaviour, or behavioural issues needing to be addressed vary drastically between individuals. Serious or disturbing behavioural problems like SIB, aggression, or even spitting are likely to have some kind of a more direct relationship with pathologies of a physical or physiological origin, like allergies, seizures or pain. These are likely to respond in a sustained manner to pharmacological inputs. Taking interest in what a parent is wearing, how he or she is looking or what, say a pendant or a cap, you would like your parent to wear or greeting your relatives with a hug or even shared attention are also behaviours which are of value. These are the behaviours which are subject to most variability as I feel they are the finer aspects of social behaviour and aberrations thereof define what autism really is. It's most difficult to treat 'autism', it seems.
Probably it's easier to address and treat behaviours which you need to eliminate as compared to those you would like to encourage and develop.
And I am expressing what I have observed in my son and only in the context of 'as yet'. Your optimism is really encouraging.
Joint attention, interest in others come under cognition and social interaction. Bumetanide worked brilliantly for us to get the social interest going. The other major enhancer has been Diamox. That said, we got a big jump with Verapamil right in the beginning which was brought in primarily for SIB and seizures related to allergies. Sytrinol, while addressing allergies and related negative behaviors, also led to cognitive improvement.
DeleteSIB and raging are horrible, and until Peter's writing, are amongst the hardest to treat. Unless one has experienced it, it is hard to understand the scope of havoc.
Again, until this blog, it has been hard to treat cognitive disability, hence the often seen 'static' remark under prognosis on assessment sheets. Also the reason there is a lot of effort put into children in elementary school, and then a petering away in middle school, leading to mainly living skills in high school.
Well RG,
DeleteYou are right. Cognition, behaviour, communication, socialization, IQ, learning, eliminating challenging behsviours or teaching positive behaviours like pretend play, appropriate social interactions or even joint attention..the positive behsviours probably technically not behavioural but cognitive in nature. I am not really as aware of or rather tend to get confused in segregating autistic expressions.
In my son, if you can really cleanly separate areas of cognition and behaviour, learning and understanding and what is called activities of daily living or something like that have shown steady improvements. His writing has become better which is a fine motor skill. His gross motor skills are also age appropriate.
What I cannot control is the tremendous fluctuation in social behaviour..social cognition or cognition expressed as social behaviour. If he rushes to greet my husband one day does not mean he will do it again the next day. In all probability he will not be even aware when my husband is back from office for another three days. I don't know the right term but I think social awareness is one area where there is least consistency. I do not even know what is his baseline for that. Sometimes his responses are like that of a neurotypical.
RG, are you a physician or a psychologist or a technical person. You are always very precise and intelligent. And you hit at my conscience. I have lots of queries and doubts regarding pharmaceuticals for my son but thinking that I will first exhaust the gentler route as I was not really comfortable with our diuretic experience. My humpty Dumpty is at least intact and improving at present, i do not want a fall, great or small.
RG could you share the dosage and brand of sytrinol you use please?
DeleteIts the Swanson brand, 150mg per capsule. I give one capsule twice a day.
DeletePeter, we have experienced the same: Biogaia (thanks to this blog!!!) worked 6 weeks fantastic and since then no longer. How long should we take a break: for a week? Or should we better wait longer, 3 or 4 weeks? Do you give Biogaia in the evening before sleep? Thank you!
ReplyDeleteI was giving two tablets at breakfast time. The producer says that the bacteria gradually fades away in the gut over about two weeks. I assume there is a feedback loop in the body which is countering the anti-inflammatory effect. Alli, whose idea all this is, came to the conclusion that 3 weeks on and one week off was best, but she is using 5 tablets of gastrus a day. For my son the effect is most noticeable by his allergy and that is how I know it stopped being effective after 3+ months. My plan was to have a two week break. I think it will depend on how large your dose is and what kind of immune system your child has. I think you need a break of one week or more.
DeleteKritika, I think that in question of probiotics, you have to achieve a good match between frecuency and how large the dose is, both of them has to do with a good or bad result. And of course, as Peter said, it will depend of the kind of immune system your child has. Valentina
ReplyDeletePeter, what are your thoughts on soil based organisms as a probiotic?
ReplyDeleteTanya, it looks like young children do benefit from playing in the garden, where they will end up eating some dirt. We saw that pregnant mothers with pets give birth to healthier babies, this is due to dog/cat bacteria they have in there homes.
DeleteIt seems that bacteria condition the immune system very early in life. The same bacteria loses this beneficial effect when you are older.
Peter, I guess soil based organism is the wrong term - it's spore forming bacteria - as in this product
ReplyDeletehttp://www.gomegaspore.com/faqs/
what are your thoughts?
Tanya, there is no doubt that in future bacteria will become a mainstream medical therapy. Since specific bacteria can do some very clever things in the gut. So bacteria for Crohn's disease makes perfect sense, you just have to find the correct bacteria.
DeleteA probiotic for allergies, asthma, mast cell issues also makes sense. I just do not know if this one is effective. You would just have to try it.
I'd like to add one intervention that resembles probiotics a bit. It's called Antisecretory Factor or protein AF and one of its mechanisms is antiinflammatory.
ReplyDeleteIt is mainly used for Crohn's disease, Menieres disease and mastitis (a common lactation issue) and is sold as specially processed oat flakes ("SPC flakes") or egg yolk powder. I've also seen people mention it in connection with vestibular issues like tinnitus or vertigo.
I have no idea if it has any impact on autism, but it should have for targeting GI problems. It is also very safe, easily edible, non-rx. drawback is price and availability.
http://as-faktor.se/en/protein-af/how-protein-af-works/
and
http://menieresjourney.blogspot.se/2012/05/salovum-spc-flakes-how-antisecretory.html?m=1
/L