In the early days of this blog, one medical reader told me that in cases of autism an MRI scan of the brain should appear normal.
This also fits with the idea that once you have a biological diagnosis, you no longer have a case of “autism”. It is only Autism, when it is of unknown origin.
People who have a single gene type of autism actually can have significant variations in brain structure that appear clearly on an MRI. This was the subject of a recent study and the source of the MRI in this post.
Many people with autism have abnormalities at a specific site on the 16th chromosome known as 16p11.2. Deletion or duplication of a small piece of chromosome at this site is one of the most common genetic causes of autism spectrum disorder.
People with deletions tend to have brain overgrowth, developmental delays and a higher risk of obesity.
Those with duplications are born with smaller brains and tend to have lower body weight, but also developmental delays.
For regular readers of this blog there are some interesting points to note.
Agenesis of the Corpus Callosum
The corpus callosum is a wide, flat bundle of fibers about 10 cm long that connects the left and right sides of the brain. It facilitates communication between the two sides of the brain.
Agenesis of the corpus callosum (ACC) is a birth defect in which there is a complete or partial absence of the corpus callosum.
ACC leads to behaviors compatible with a diagnosis of autism or Asperger’s in about half of cases.
Symptoms of ACC vary greatly among individuals, as they do in all types of autism. Seizures are common, some people have poor motor coordination, and some people are non-verbal. My original post on the subject:-
You may recall that in the film Rain Man, Dustin Hoffman’s character was inspired by a man with ACC called Kim Peak. It is now thought that Peak had FG Syndrome and this is what caused his ACC. It appears that his brain adapted and made unusual connections leading to his remarkable memory.
You may recall that in the film Rain Man, Dustin Hoffman’s character was inspired by a man with ACC called Kim Peak. It is now thought that Peak had FG Syndrome and this is what caused his ACC. It appears that his brain adapted and made unusual connections leading to his remarkable memory.
The Corpus Callosum is clearly visible on an MRI.
In 16p11.2. deletion you end up with an overgrown (thick) corpus callosum, while in 16p11.2. duplication you end up with a thin corpus callosum, which equates to a partial Agenesis of the Corpus Callosum.
At least one reader of this blog has a case of partial Agenesis of the Corpus Callosum and as he told me, it is not autism it is ACC.
Chiari 1 “brain hernia”
Another point of interest on the above MRI has been highlighted as Cerebellar Ectopia. Now if they had called it a Chiari malformation, you might have linked it to an old post on this blog.
In people with brain overgrowth and/or a small skull, what happens when there is no space left for a growing brain? Well it appears that pressure builds up and you get a kind of hernia with the brain expanding downwards into the spine.
This is called a Chiari 1 malformation and it seems to be quite common in the types of autism associated with over active pro-growth signalling pathways.
Since 16p11.2 deletion is associated with too much growth (thick corpus callosum, brain overgrowth and obesity) we should not be surprised that they often present with Chiari 1 “brain hernia”, which is treatable and this should improve symptoms.
Conclusion
An MRI can sometimes tell you a lot, when you know what to look for and clearly should be carried out on anyone diagnosed with disabling autism.
Undoubtedly there are other areas of the brain where important variances occur.
This would provide useful data to assign individuals with autism into subgroups and hence improve the chance of finding effective therapy. What works for Peter may help Paul, but what works for Zach probably will not help Amber.
If government and the broader public were serious about autism, upon each new diagnosis a free MRI and analysis by a trained professional should be standard practice. Not only would it easily diagnose gross brain malformations like a Chiari malformation or Dandy Walker syndrome, but the datasets would be publicly available to researchers and since the quality of machine learning algorithms depends greatly on the quantity of data for training, not just the quality, those methods would improve over time and eventually lead to a 100% diagnosis of autism via brain scan and per has even 100s of subtypes of autism if they exist, independent of what GWAS methods diagnose.
ReplyDelete"100% diagnosis via MRI" - WOW, Tyler, you really believe that MRI will capture ALL autisms (or even majority)?
DeleteIn the meantime, it looks like finally there will be some serious look at blood ( https://neuropointdx.com/camp/ )
Tyler. There was movie Concussion about Dr Bennet Omalu / CTE and wikipedia says "most concussions cannot be seen on routine neuroimaging tests such as CT or MRI".
DeleteBy a trained eye, MRIs won't do much other than the easy to spot stuff. Machine learning algorithms will spot a near infinite number of things impossible for a human to do. This is not science fiction, rather it is already being done, including for autism diagnoses, just the researchers don't have a lot if data to work with. In general, whether it is alexa/siri or else some machine learning neural network for autism, the more quality data you have, the more accurate the predictions made by the neural network.
DeletePeter,
ReplyDeleteFirst, is it providence that both the current post, and the one preceding this are so relevant for me. We will be carrying out an MRI tomorrow on my son and I will share the results.
Secondly, yesterday was teachers day for us in India and there was a problem with you web site so could not get my message through. I want to wish you a happy teachers day for you have been one great teacher...the kind who not only imparts knowledge but inspires one to seek out knowledge. When we talk to doctors as informed parents, the doctors look up and think...hers comes an epiphany mother, no room for evasion.
When I find myself in times of trouble
Peter always enlightens me
Speaking words of wisdom, don't let it be.
For there will be an answer, so don't let it be.
Hi Peter,
ReplyDeleteYour post was very timely - the following paper is called "Association of White Matter Structure With Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder" and it just came out today:
http://jamanetwork.com/journals/jamapsychiatry/article-abstract/2652828
AJ
Hello Peter,
ReplyDeleteCould not get an MRI done...some confusion about availability of person who will administer intravenous sedatives. But then we could get a VBG done....and my sons oxygen readings were 18mmHg...much lower than the reference range. I do not know what to make of it as his blood pH was normal. We also got one of our report on blood metabolic panel and it was all norma l.
Any idea what could be behind the low oxygen readings in the VBG test ( mostly done to test blood acids I think)
Kritika, you will have to ask your doctor what could cause the low VpO2. In someone with autism a reduced amount of oxygen in the blood is a significant finding and you would expect that normalizing the level would have a cognitive benefit.
DeleteSo you should make sure the doctor pursues this.
I thought so Peter. My regular paed says not to worry...we have to take all the test results to the neurologist. But I feel this has to be pursued as you said. My son Interestingly, my son is today urinating very very frequently. I think our neurologist will investigate this as she was almost about to write me tests for endocrine function but then asked to get the first round of tests done.
DeleteThanks
Peter, do you think that the hyperbaric oxigen treatment could help in Kritika´s son case, with his reduced amount of oxigen in the blood? Valentina
ReplyDeleteValentina, it is a case of hypoxemia, and likely has a cause, perhaps anemia. It is definitely some thing mainstream medicine should be able to deal with.
DeletePeople with COPD do use oxygen to raise O2 levels, but in a young boy best to identify the underlying cause, which I am sure is possible.
Valentina, Peter,
DeleteAll the possibilities you have mentioned are racing through my mind..even pulmonary issues but we had a chest x ray done a month back which was clear. Low oxygen levels,could probably be a reason why my son did so badly on supplements lowering blood pressure.
Kritika, this is common with the histamine intolerance/mast cell folks. Many different theories as to why. Maybe try a google search with low oxygen and histamine mast cell and see what you find, if any thing resonates, that you can ask your doctor about. When my son's asthma was more of an issue, I kept a finger oxygen meter close by at all times - I was so paranoid about it. No flares since on mast cell stabilizers. Peter mentions low iron as a cause which is another issue common with histamine/mast cell. Also I have read mito issues and inflammation can cause it. And over breathing (hyperventilation) from stress and anxiety supposedly can cause it - but I imagine a doctor would roll their eyes at that one.. Best of luck
DeleteTanya,
DeleteYes, in fact low oxygen might trigger histamines release and probably that is why we see episodic increased urination, erectile issues and so on. Stress and we again come to adrednal insufficiency..I do not to what extent investigation will help but cortisol levels do affect oxygen. I will try and get an endocrine panel test done too...some relevant hormones.
Thanks for the information. I have to note everything down so that I can discuss it with our doctor.
I know this is off topic, but would anyone being willing to share their personal experience with biotin?
ReplyDeleteThanks,
Jolene
Jolene, in my son it seemed to work well for a couple of weeks and then just produced anger. The positive effect was in many areas, so it is not something like more speech, rather just less autistic. I think the dose was 10mg a day. It seems that many B vitamins have this effect, first a good effect which then turns bad. One thought is that by increasing the level of one B vitamin you may disturb the level of others.
DeleteMy son suffers from hypoxic injury during infancy and corresponding motor/speech apraxia (not classic autism). We started biotin to help keep candida in check back when he had big gut issues which have resolved almost completely with hbot. We still do pretty high doses for a 45 lb child, 3-4000 mcg daily via gummies. Biotin also aids in absorption of Alpha Lipoic Acid, which is a major part of our latest biomed rounds and will stay. Our number one intervention is hbot.
DeleteHTH~
MaryKate
Peter and Mary Kate,
DeleteThank you for sharing your experiences with Biotin. I had started at 5 mg, and worked up to 20 mg. It's the fourth day of 20 mg and I don't feel like I've seen any changes. I'll try for another day or two, then discontinue. Thanks!
Jolene
Peter, sorry for pestering but adrenal hormones have a cascading impact on a number of hormones...those involved with fluid balance and even thyroid hormone. With my son's weight and height in the 95th percentile, thyroid hypofunction could also be an issue...another cause of low oxygen. Actually treating any of these possible issues will not treat autism but will help an autistic child function better.
ReplyDeleteKritika, the 95% percentile certainly puts him in the hyper active pro-growth signaling category. So you might expect him to respond to drugs that match that profile. I think the actually effect starts with these underlying pathways and then you see it in changes in hormone level.
DeletePeter, what about the other end of that growth spectrum? the bean pole thin kids, not tall, had a normal head size as baby? what is that pathway and the significance? Is it associated with adhd? It seems, just based on my observations, kids with adhd are shorter and very skinny. Or is that a result of medication? My son has never been on adhd medications - and never will be.
DeleteTanya, this chart sums thing up:
Deletehttp://www.frontiersin.org/files/Articles/154178/fnins-09-00313-HTML/image_m/fnins-09-00313-g001.jpg
from this paper
http://journal.frontiersin.org/article/10.3389/fnins.2015.00313/full
These are the two broad groups. I would say in this framework you just pick the closest, so short and skinny would go in the small head group. It is not perfect but I think it is helpful.
Stimulants like Ritalin, should suppress appetite, but studies show they can cause obesity.
Peter,
DeleteWhat could be the drugs that match a hyperactive, pro growth profile. And please could you do a post on possible causes, consequences and treatment possibilities for low blood oxygen.
My thoughts are in a whirl now....had to get a new speech therapy and OT plan chalked out and then all these tests.
Like a circle in a spiral, a wheel within a wheel,
Never ending, nor beginning in an ever spinning reel
......windmills of this autism deal
and of course of my mind.
So Peter a really stupid question I have son large head big boy for a 4 year old. He fits the hyper active pro growth subgroup what are the drugs supplements that should be used. Thanks
DeleteIt is a very good question. I do not have all the answers, but if you further narrow his type of autism, then what works for others in that narrower group is quite likely to work for him.
DeleteOne reader of this blog has a son who has similar features to my son and responds to drugs in an uncannily similar way. But you need to know a lot about the child and even family history to draw conclusions. In blogs and forums people share just snippets of information.
It may well be that people with small heads often do not respond to bumetanide. We do not know because nobody collects this data.
I only know the full details of a handful of people with autism and only treat one.
Hi Peter,
ReplyDeleteBeen wanting to ask if you've considered doing a possible article about Hyperbaric Oxygen here on your blog. It has been a remarkable therapy for us and there has been a recent US news article about Dr. Paul Harch and his success in treating a 2 year old drowning victim. She's now fully recovered. There is a lot of info on his website about the mechanism of action with HBOT. We do mild hyperbaric here at home with an O2 concentrator, 2 hrs a day. Progress in three months (with only about 2 weeks off in that time) has been beyond remarkable. I wish I could describe everything we have seen an improvement in, but that will have to wait until I have more than 5 minutes to type! :) Let's just say across the board, massive improvement. BUT we have always known his issues were caused by TBI and hypoxia at birth, there was no mystery there. In my opinion, at this point after seeing my son's improvements this summer---if you think your child has hypoperfusion from a brain injury or is suffering a lack of blood O2 ir anything neurologically based, this treatment should be number one on the list of interventions to try, hands down.
MaryKate
MKate, I did write about the HBOT research a long time ago, which basically does not validate its use. Your therapy is different to HBOT, its just the OT part and 2 hours a day, every day, is much more than a few "dives" in a chamber.
DeleteThe broader issue is whether, in some people, increasing either cerebral blood flow, or the O2 in that blood, is beneficial. I think it should be and there are many ways to achieve this and some relate to NO (nitric oxide) rather than O2 directly.
HBOT does seem to do clever things for neuropathy, that your O2 concentrator probably would not do, but do these things in any way relate to the brain?
HBOT can be very expensive, but O2 therapy should not be.
So I think there should be a hypoperfusion/hypoxia post, rather than specifically a HBOT post.
Peter, Mkate,
DeleteWould you be so kind as to also suggest strategies of using an oxygen concentrator at home....I mean the practical details keeping an uncooperative child in mind. Two hours per day is quite an accomplishment. I hope Mkate responds though she is only an infrequent visitor here.
MKate,
ReplyDeleteI have been so wanting to explore Hyperbaric oxygen therapy, even before I got some indication about my sons low blood oxygen status but parents experiences have been do discouraging. We are showing him at Max, Delhi, one of the leading hospitals in India and doctors and care here is I think at par with international standards...my son was also delivered there. But as it was an induced normal vaginal delivery, sometimes I feel there might have been a subtle hypoxic damage. I too will explore that option and discuss with our doctor.
Wishes
peter,
ReplyDeleteforgive me, i might have misrepresented my experiences and knowledge for lack of time to type. i am well aware of the difference between hbot and mhbot. my husband is a mechanical engineer and has several years of scuba under his belt and helped me understand things as i was researching the gas laws, etc. it's a very in depth subject but not one fully explored and there have been very few (if any!) decent clinical trials done regarding autism. however, if you feel it is worth your time, james neubrander, the dr. that started the b12 shot therapy trend, makes an excellent case for mild hbot over a period of a year, even two. i simply wanted to mention my anecdotal success in case anyone else reading may be in the same situation with an autistic child as a result of hypoxic or ischemic TBI. i'm not out to convince anyone. i'm seeing improvements in my son and, deep in my exhausted selfish little heart, his recovery is all i truly care about. if you think it's bordering on quackery, that is certainly your right and anyone else's. we may do a round of standard HBOT at some point when he is more fully recovered, but right now we do mild at home because it's something that can be a daily therapy done long term with intermittent weekly breaks, not jsut the 40 treatments per round @1.5-1.75atm 100%O2, with a break of 1-2 months between each round. reading on autismweb of first hand accounts, it seems that many children don't have immediate improvements after one round, it may take 3-6 rounds and that is only if the parents are willing to try it again, many of which cannot afford to as it is 8000 usd per round. it's completely unaffordable, that is absolutely true! why is it though, that is another case entirely. with a home chamber one can say that low and slow may just win the race. we invested in a large 44 inch inflatable chamber that my son can move around in and play with his ipad and toys. he gets 1.3 atm with about 60-70% 02 via an oxygen hose (held in his face by me, not fun but doable, though my back begs to differ) for two hours at least 5 days a week. we also follow with vitamin c and e antioxidant supplements along with his usual therapy. it is a big commitment we have made to do this. in theory, over time (and we believe now after seeing incredible improvements in 3 months) that it will have the effect we are hoping to achieve. kritika, we also did what peter mentions... for a few nights in the beginning, we just had my son on an O2 concentrator with a face mask for an hour after he fell asleep, right before we started in the inflatable chamber. i saw an immediate positive effect in him after the first night, as did his speech therapist the very next day as he was MUCH more vocal and made a greater effort to engage with her calmly without running around the room. not that i am a dr, but i do not think there would be any downsides at all of giving him supplemental oxygen at room pressure if you are able to obtain it. and if you think he had hypoxic damage hbot would be a worthwhile investment to look into, depending on if you think your son could handle the process. it could definitely be a traumatizing experience for a child with sensory issues in those chambers with nothing to "stim" with or food or drink aside from some water in a plastic container due to the flammability of pressurized pure O2 in the enclosed chamber. that was a factor in our decision to do mild hbot at home, simply because we knew our son couldn't handle 'the real HBOT' in a hospital setting.
peter, naturally i don't want to get anyone's hopes up and make great claims of curing my son when there are so many parents seeking answers for their unique situations, but you make the case with every post that not every intervention works for everyone. if anyone is interested in a more detailed explanation of my son's improvements, i will try to get another longer reply typed up in the next few days.
MKate
Mary,
DeleteFirst of all, accept my respectful regards. I cannot imagine how one could get a brat inside that chamber, holding a hose near his face, and for two hours. Hats off to you! Never mind Peter. Zachs's quackery could be Amber's silver bullet..or science much ahead of its time. And some leading paediatric neurologists in India do recommend HbO2 for certain autistic kids..Apollo hospital in Delhi, another good hospital, has hard chamber therapy available.
I did read parents accounts on autism web. I think, right now, an oxygen concentrator could be doable.
Although venous oxygen readings do not reflect arterial oxygen content, my neurologist whom I texted the readings did not give me a clear green signal for MRI under GA. That means VpO2 is not entirely irrelevant. Also, my sons behaviour right now could put him on cover page of MAD comics. He has never been like this before and he is behaving this way since he caught a bad viral....but the looney behaviour is not subsiding. Inattention, lost look on face, ocd, strange posturing with curling of fingers and toes. Could it be coz of temporary fall in oxygen...and the almost neurotypical behaviour we see on good days due to normalization of oxygen. All conjectures.
On our next visit, I am having the neurologist s brain for lunch (translation of hindi proverb). And Mary, I am really intersted and so will lot of other readers be. So please share your experiences and information, when you get the time.
MKate, you are very welcome to write a guest post on this blog about your use of HBOT.
DeleteHBOT does have big fans, my own father in law has HBOT and several days of alpha lipoic acid infusions every few months at his military hospital, all for free. It is used for diabetic neuropathy.
Have you ever measured the level of oxygen in your son's blood? It would be useful to know if his base level is normal or low. HBOT can increase it by 6 fold, in the short term.
If increased oxygen is helpful, plenty of other things should help such as cocoa flavanols, beetroot juice and many other things endurance sportsmen use to boost their performance. They need more oxygen to reach their mitochondria.
It does appear that some other autism parents who find HBOT useful also recall events that may have caused hypoxia, either at birth or soon after. Then you have a subgroup with a higher chance of responding.
Peter, I didn´t imagine that my question about HBOT because of Kritika´s son would be so controversial.I have never measured the level of oxygen in my so´s blood but. I am afraid that the great improvement of my son before agmatine was due to alpha lipoic acid and the rest of the stuff.I also have to report that my child started with much nervousness since 3 days, today I suspended agmatine and he is calmer but continues with his anxiety, nervousness. I don´t know what could be happening.
DeleteValentina
High ALA doses and mild HBOT are my son's "silver bullets" right now...it has brought us to a point where I see recovery in his future. All other interventions we tried only worked briefly or not at all, other than probiotics/enzymes for gut health. What are your thoughts on that, Peter? Incidentally, my son's hand flapping stopped almost completely within the first month of mhbot. After adding ALA three weeks ago, they have become non existent. I can only conclude pain/numbness was a factor, as it probably is with about 90% of autistic children in some way, shape, form. I think the HIE subgroup is probably a lot larger than any of us imagine.
DeleteThis is a great article that might be very informative for parents of children who have similar issues : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5187878/
MKate
MKate, in the ideal world you would just ask one of those autism doctors who has used HBOT for 10+ years, in those that responded well to HBOT and antioxidants, what else worked? Then try that. Also ask him why he does not publish case studies, so that others can potentially benefit.
DeleteIf it was my son, I would try other antioxidants, Nrf2 activators and things that increase blood flow via nitric oxide. All of these things should potentially help, but in slightly different ways.
Hi MKate,
DeletePlease write details regarding mild HBOT treatment and improvements you are seeing. Another parent personally recommended using HBOT chamber saying it gave overall improvement. But we read contradictory statements also that improper usage may give epilepsy. Would very much appreciate your experience. Thank you.
We have done 4 rounds of hard chamber of HBOT at 1.5atm. 100% oxygene is pumped into the chamber, so no need to wear a maks. The chamber also has glass walls - less claustrophobic, can watch TV above the chamber. The first round gave the most dramatic improvements in awareness. 2nd gave significant improvements. 3rd and 4th gave almost no effect. One thing to note is that during HBOT the speech became worse and then recovered after HBOT. I can't understand the theory behind it. Perhaps HBOT destabilized my son's EEG (he has abnormal EEG spiking). Some parents report that their children would have seizures during HBOT. So, it is important to check EEG before HBOT and start anti-seizure meds if EEG is abnormal.
ReplyDeleteAnonymous,
DeleteDid the improvements after first round of HBOT hold or fade away?
Yes, the improvements stayed. We did the first HBOT at 5y. Before that we tried about 60 different supplements, drugs, chelation. Those either didn't work or the improvement only lasted 2-4 weeks. HBOT was the only one that put my son to the next level of functioning, where he stayed until the next HBOT (we did the first 2 HBOT's the same year, then 1 HBOT per year). We just finished the 4th HBOT. My son started in a class for severely affected autistic kids at pre-school, moved to kindergarten for moderately affected, and then to a mild program in 2nd grade at age 8. My son used to have daily meltdowns, hit his head, kick his teacher, run away, didn't follow directions (especially multi-step), would collect leaves at the playground. Now the behaviors are almost gone (no SIBs, no kicking teachers), follows us without holding his hand (I thought it will never happen), if he doesn't see us, he start looking for us, he knows where his class-room, plays on playground as normal kids. He still has a lot of issues like restricted interests, poor focus, visual stims (flapping his hands in front of his face), still needs an aide at school to keep him focused, language is still below normal (but he can read and do grade-level math), very thin. We started anti-seizure meds last year, and they helped too especially to language retention and behaviors (were critical to eliminate SIBs).
DeleteI think it's like Phase 1 and Phase 2. Phase 1 sets up the oxygen rich environment with immediate elimination of oxidative stress which happens with any neurological malfunction or TBI. Immediately your child feels better, acts better, and your hopes are raised. But afterwards, phase 2 is the longer process of Restructure/Rebuild/Relearn...and that is entirely case dependent and no one can say exactly how long it will take. It's both uplifting and extremely frustrating. James Neubrander's theory and practice is that real progress comes with a shift between mild/hard treatments, used together over longer periods of time. With this you get a long term "low" dose of O2 for constant rehab along with all the other therapies (ABA,OT,SPT), mixed in with the high dose HBOT spurts in order to reach hypoperfusion deeper within the brain structure. Is it expensive and time consuming? you bet it is!! does it work? yes. Also, my son did not do so well about 3 weeks into it, and we had to readjust doses of antioxidants which seemed to do the trick. Higher pressures often exacerbate seizure activity, but that is why many then posit that mild can still offer some benefit without "as much" risk.
DeleteIt is wrong and misleading to focus solely on HBOT’s effects in relation to hypoxic-ishemic injury. Its effects are much broader in range than ‘solely’ improving oxygen supply to tissue / improving blood flow, cerebral perfusion.
ReplyDeleteHigh and low pressure environments modulate electrical conductivity of cell membrane, especially neurons, which we know is messed up in autism (have you seen the latest https://www.ncbi.nlm.nih.gov/pubmed/27356918 "Our data demonstrate aberrant voltage-gated currents and underlying molecular changes related to synaptic function… in autism"). Both outer plasma membrane - think calcium-verapamil, potassium-bumenatide and other ion channels, NMDA - as well as mitochondrial membrane and cell energy production are affected by baric pressures.
HBO treatment also appears to reduce inflammation and microglial activation through blocking no other than purinergic receptors ("HBO treatment may inhibit microglial activation via downregulation of P2X4R…”). This mechanism is thought to be behind HBOT reducing neuropathic pain and sensory oversensitivity resulting from microglial activation (both of which are found in autism).
Peter, I am not disagreeing with you when you say that children with autism who suffered lack of oxygen would be the best candidates for HBOT, they probably would, but imo many others could benefit too.
I also wouldn’t pay too much attention to 'lack of effect studies’ in this instance. We all know so well that there are thousands of reason why almost any treatment, when tested in isolation, no matter how solid the hypothesis and the data from other fields, and how mind-blowingly life-changing the treatment has already been for some kids, will be shown to have ‘no statistically significan effect’ on a larger autism sample. And especially in a treatment like this one, where our knowledge on the most optimal pressures, amounts of oxygen, frequency and duration of treatment is far from complete.
Nat, the world of autism is always short of facts.
DeleteThe clinicians using HBOT for autism need to write case studies about those kids who react are so positively and look for what these responders might have in common.
Let's have a paper with case histories of 10 great responders. That is much better than picking 40 autism kids at random and giving 20 HBOT and 20 a sham treatment, which we know will likely show nothing conclusive.
Peter,
DeletePlease do a post specifically on treatments to increase blood oxygen levels...you might have mentioned them before but they are all scattered across many posts I feel.
Also, should I order cocoa activa pills (my son swallows pills). I general I had been observing that supplements enhancing blood flow, energy help my kid and those lowering blood flow do not go down well with him. Oxygen connector is available on rent, affordable, so is the chamber ( not checked the cost). Our pediatrician is like you....evidence based medicine...so he will not be a big fan of HBOT therapy but let me discuss with the neurologist also.
DeleteKritika, in the short term you could use Diamox, in its use to avoid altitude sickness. It changes the pH of the blood and so increases its capacity to carry oxygen. I used it myself a very long time when crossing Nepal/Tibet. It is very well known for this use. If he does not improve on Diamox, I doubt increasing O2 will help him.
DeleteIf it does help, then could use exercise to increase his blood O2 level.
Red blood cells in sports: effects of exercise and training on oxygen supply by red blood cells
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3824146/
You can also increase the flow of O2 by increasing blood flow, which endurance sportsmen do. Vasodilation caused by relaxation of smooth muscle cells in arteries causes an increase in blood flow. So you get more oxygen because more blood is passing. Cyclists use beetroot juice to do this, you could try 100ml a day. In dementia cocoa flavanols (Cocoavia/ACTICOA) have been used to increase blood flow to the brain. There are also various drugs (eg hydralazine and minoxidil), but that would not be wise.
About HBOT. I posted here earlier that my son had 4 HBOT treatments in the last 3 years. There were several things led me to try it:
Delete1. My son has low RBC and low blood iron, pale. So, I do believe that he has poor oxygen supply.
2. He was sucked out of the C-section, and the suction cap left a huge bruise on his head (who know how much damage was done to blood vessels). I came across many parents of autistic children with similar stories.
3. At age of 1.5y, before being diagnosed with autism, he feel and hit his head, blood came out of ears. Doctor decided to do nothing.
4. Brain injury looks remarkably similar to autism.
You can wait for case studies, which I am sure will be plenty, but not to the level of clinical trials which are impossible in HBOT case. Or, you can just try HBOT to see if it does anything. I spent $35k on 4 rounds so far. And I view it as an investment into my son's future.
Anonymous, like I said to MKate, you are very welcome to write a guest post about your use of HBOT. It has been used for many years already in autism and there has been plenty of time for case studies, if clinicians had an interest to write them.
DeleteSo make your own case study, find other parents with similar experience and then you have your own autism sub group, where other therapies are more likely to be effective. It is win-win for all concerned.
My blog started life because bumetanide really helps my son and I wanted it to be out there in the public domain, for others to be able to read about, should they so wish.
Anonymous,
DeleteI was anaemic with low blood pressure and lost a couple of kgs, coming down to 49 kg during my pregnancy. I was induced for delivery with synctocinon and got an epidural. My cervix would not dilate so they broke my water but still my contractions did not come on very strong. I was kept hungry for almost 24 hours and finally when the time came for pushing, I was too week. The staff was cold and unhelping but I remember the doctor talking about taking me for c sec if I cant push the baby out in another five minutes as bzbys oxgen levels are falling. It was a vantuose assisted delivery...there was immediate birth cry and apgar score of 9. But I also recall the doctor telling her junior...see its a hematoma.
Anyway, that is past. Through your accounts here and on autism web, I feel there are similarities in how our sons react to drugs and supplements...even bumetanide. Spontaneous social intetaction was what I saw one month after commencing bumetanide but I was looking for dramatic cognitive gains which Peter had asked me to watch for. So wisdom dictates that I should try out things that worked for you.
HBOT seems to be a huge investment for us right now...will have to explore if my husbands embassy (swiss) will reimburse the amount. But in any case, I will take it further.
Do write a guest post. Case studies do matter a lot. And thanks for sharing with information.
Peter/Mkate/Kritika,
DeleteThere's been a popular interest in the last few weeks in India on HBOT. Couple of celebrities posted Instagram pictures of themselves in HBOT, one for an autoimmune disease (mastocytosis I think) and another actor for anti-ageing!
I got curious and found out that there are many centers around me that offer it and a big hospital near me has a wound care division which offers HBOT. The surprising thing is that the cost is very low (less than $50 for a session) leading me to wonder if there is a catch. They want to do a fitness test to see what atmospheric level might be tolerated. I am tempted to try this. Could anyone suggest how many sessions and what frequency should we try before we can gauge the effect? Anything I should look out for?
Anvesh
Anvesh
Peter,
ReplyDeleteI really appreciate your taking time to respond. Tibet? India too?
I do not think diamox will be a good choice for my son as his blood pH and bicarbonate levels are normal... tested thrice. Also, we have had one episode of painful urination responding to alkasol. So acidifying his blood would not be wise I feel. Since his blood is not alkaline (higher than normal), we are back to square one. I will try to procure cocoavia at the earliest and of course, exercise is the emperor cure of all maladies.
Incidentally mb12 increases blood circulation too. Could that be why my son responded well to it. But I am really tempted to trial an oxygen concentrator. What harm could it do.
Kritika, it was independent travel from Delhi to London by land, returning through what was still then the Soviet Union via the Beijing branch of the trans-Siberian railway and long before China had modern trains. Since we went up to 5,000m I brought Diamox.
DeletePeter,
DeleteWow...I have trekked upto 3700 m in uttarakhand and it was tough but beautiful...as you see the timber line disappear..worked extensively there for my PhD but that was at much lower altitude...some of the best days of my life.
You are great in more than one ways. Delhi to London via land!!!
Very interesting, thank you! My daughter with quite severe autism developed TC seizures two weeks after probable untreated strep (at age 16). Developed pandas symptoms in the days and weeks following. Never had an MRI until then, and it shows two bi-lateral meningeoncephaloceles. Hard to tell when it started as she never had MRI until then. She did have some rapid head growth as a baby, but now I wonder if brain inflammation that had always been there, increased due to pandas. The new MRI finding is not treatable surgically due to the areas being very close to the carotids. Seeing a new neuro soon. Input/thoughts appreciated. TIA
ReplyDeleteHi Peter,
ReplyDeleteI am going to meet the neurologist (public service) tomorrow and likely I would ask for a MRI/fMRI for my 30-mo. His autism is idiopathic. Anything I should get prepared before I talk to the neurologist in your opinion to make the best use of the time?
MH
MH some inborn errors of metabolism can be identified via fMRI, you would have to look these up and/or discuss in advance with the neurologist.
ReplyDeleteYou could ask him to check the size of the corpus callosum, which would indicate something about the sub-type of autism. It is possibly either a bit big or a bit small small. He should check for chiari malformation, which will only be there if the brain is big.
https://www.spectrumnews.org/news/inflammation-may-reshape-brain-regions-tied-to-autism/
ReplyDeleteProbably easier to measure il6 levels before going for an MRI. Good thing bumetanide decreases brain edema. Now the better question is if decreasing il6 would help change the structure back.
-Stephen