tag:blogger.com,1999:blog-655962722302095847.post161635647007121516..comments2024-03-28T20:30:37.506+01:00Comments on Epiphany: Channelopathies in Autism - treating Cav1.2 with VerapamilPeter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-655962722302095847.post-64049732825533798062024-01-28T18:52:24.485+01:002024-01-28T18:52:24.485+01:00Hi JB -
I just read through your questions and tho...Hi JB -<br />I just read through your questions and thought I might share. Have you tried Occupational Therapy for his feeding issues? My son has hypoxic-related autism and when he was between 6-9 months, he had an aversion to solids and even purees in the beginning - he just wouldn't open his mouth. Fortunately, we were in physical therapy (for hypertonia) and the therapist recommended an Occupational therapist that specialized in oral issues. She worked with him for about 2 months and eventually we got him off only liquids. Hope you find something that works!Mohttps://www.blogger.com/profile/12137351833015285507noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-85930846059279266482024-01-27T19:27:24.577+01:002024-01-27T19:27:24.577+01:00Hi Peter, for us allergic food bad oils, preservat...Hi Peter, for us allergic food bad oils, preservatives, plastic toxins, dust mites and mold spores triggers it. I am thinking the overall sensitivity may be arising from mold infection. Have to do testing. He was not that much sensitive always. Thanks Sudhakar Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-75188598922847965902024-01-27T13:04:52.567+01:002024-01-27T13:04:52.567+01:00Sudhaker, I recall my son saying his head "wa...Sudhaker, I recall my son saying his head "was on fire".<br /><br />Histamine in the gut is supposed to be broken down by an enzyme called DAO, in that way most of the histamine from food should not reach the bloodsteam and potentially some reach the brain.<br /><br />Some people lack DAO.<br /><br />The varuious types of lactobacillus rhamnosus can either increase histamine in the gut, reduce it or have no effect. It is not simple.<br /><br />If the histamine is released via an allergy in the nose or eyes the lactobacillus rhamnosus in the gut is unlikely to have much effect.<br /><br />There are two broad groups who have a problem with histamine. For one group it is like a food allergy, for the other it is an allergy where there is a red nose, itchy eyes ot itchy skin.<br /><br />You need to figure out where your son's allergy originates. Then you can treat the allergy and the SIB should improve.<br /> Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-60638111202446310512024-01-27T07:24:32.703+01:002024-01-27T07:24:32.703+01:00Hi Peter,
As i have shared earlier my son too do...Hi Peter, <br /><br />As i have shared earlier my son too does sever SIB with histamine flares. As my son is non verbal and i could not derive him what he feels inside when this episode happens. Can i request you if you know from your son what he feels, is it like burning kind of pain or shooting pain. Also i was reading on taca site that lactobacillus rhamnosus can degrade histamine. Any thoughts please. <br /><br />Thank<br />Sudhakar Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-5484585107598514842024-01-09T19:07:24.045+01:002024-01-09T19:07:24.045+01:00Sudhaker, if you have the means, you can maybe try...Sudhaker, if you have the means, you can maybe try omalizumab. <br />Stephennoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-189280729458638932024-01-09T15:41:42.547+01:002024-01-09T15:41:42.547+01:00Sudhaker, as Monty got older the allergy-driven ri...Sudhaker, as Monty got older the allergy-driven risk of aggression got worse. In the end Verapamil was not sufficient. <br /><br />The solution was to add Pioglitazone during the spring and summer months. Pioglitazone is a drug normally used for type 2 diabetes; it has been trialed in autism. It has broad anti-inflammatory effects which is likely who it is effective in summertime raging. <br /><br />The permanent solution would be to go and live in the mountains, where there seems to be no problem with his specific allergies.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-28563882998650145412024-01-08T08:13:12.481+01:002024-01-08T08:13:12.481+01:00Hi Peter sir,
Good Morning and Happy New Year!!!
...Hi Peter sir,<br /><br />Good Morning and Happy New Year!!!<br />Certainly we see calm, quite and more cooperative kid on verapamil. May I ask regarding summer time allergies in case of Monty. Could you find permanent solution or you have to still use verapamil.<br /><br />Nice day!<br />SudhakarAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-72249546197681732692023-06-07T19:02:41.741+02:002023-06-07T19:02:41.741+02:00I've been onto the same as you. Many of my Aut...I've been onto the same as you. Many of my Autistic son's snp's are related to calcium channels. So far I have him on Magnesium and Melatonin, as I've read they are calcium channel blockers. I get migraines with aura, so I take them for myself as well. Wish I could safely try Verapamil.Bekah Yhttps://www.blogger.com/profile/12187380111703994114noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-16246758682850098802017-06-15T23:04:51.394+02:002017-06-15T23:04:51.394+02:00The CACNA1C gene seems very interesting, (at least...The CACNA1C gene seems very interesting, (at least for rats).<br /><br />Gene associated with schizophrenia, bipolar disorder, autism, ADHD, and depression linked to brain cell death in mice. (easy-to-read)<br />https://medicine.uiowa.edu/content/gene-associated-schizophrenia-bipolar-disorder-autism-adhd-and-depression-linked-brain-cell<br /><br />"The findings suggest that loss of the CACNA1C gene disrupts neurogenesis in the hippocampus by lowering the production of BDNF.<br />Pieper had previously shown that the “P7C3-class” of neuroprotective compounds bolsters neurogenesis in the hippocampus by protecting newborn neurons from cell death. When the team gave the P7C3-A20 compound to mice lacking the CACNA1C gene, neurogenesis was restored back to normal levels. Notably, the cells were protected despite the fact that BDNF levels remained abnormally low, demonstrating that P7C3-A20 bypasses the BDNF deficit and independently rescues hippocampal neurogenesis."<br /><br />So what is that compound? From Wikipedia:<br />"P7C3 is a drug related to latrepirdine (dimebon) which has neuroprotective and proneurogenic effects and may be potentially useful for the treatment of Alzheimer's disease and similar neurodegenerative disorders. The pharmacological effects of P7C3 in vitro resemble those of endogenous proneurogenic peptides such as fibroblast growth factor 1 (FGF-1)".. "The mechanism of action of the P7C3 series of compounds involves activation of nicotinamide phosphoribosyltransferase (NAMPT), the rate-limiting enzyme responsible for the transformation of nicotinamide into nicotinamide adenine dinucleotide"<br />https://en.wikipedia.org/wiki/P7C3<br /><br /><br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-27679738880701431252016-02-03T00:16:22.349+01:002016-02-03T00:16:22.349+01:00Peter, allergies masked the benefits from NAC, ver...Peter, allergies masked the benefits from NAC, verapamil and the MAD, but not the bumetanide in our case. Though behaviors such as irritation and sib came up with allergies, the cognitive improvements held on and continued to improve. RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-21401463003850671662016-02-01T09:46:45.980+01:002016-02-01T09:46:45.980+01:00Hi Bhuvaneswari,
Maybe try Zyrtec? It usually w...Hi Bhuvaneswari, <br /><br />Maybe try Zyrtec? It usually works for my allergies which are itchy skin, one eczema patch that will flare, creepy crawly feelings up and down my calves, dry nasal passages and shortness of breath, with borderline wheezing. <br /><br />My daughter had a lot of food sensitivities, on top of true peanut and sesame allergy. Many foods that she could not handle. Much of it resolved when we did the Specific Carbohydrate Diet. I modified it though, did not use the extensive nuts and honey and baking soda. Instead, my daughter ate meat, lot of butter and olive oil, egg yolks, well cooked veggies, nothing raw since fibre is pretty hard to digest. A few fruits such as bananas, all the berries. I basically followed the diet prescribed by Dr. Haas, in the 50's, who created it, rather than Elaine Gottschall's version. My husband also did it successfully for his chronic gi issues. <br /><br />The diet was not very difficult to do, and we have stayed close to it all these years, except occasional treats. It also made it very easy to transition to the MAD. MAD and verapamil have improved things quite a bit, to a point where she is now able to handle many different foods, even garlic which has always been hardest for her. If you would like more information, please feel free to ask. RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-60179987758437253792016-01-31T19:03:55.908+01:002016-01-31T19:03:55.908+01:00There is a great deal of evidene to support the us...There is a great deal of evidene to support the use of bumetanide, so it is well worth trialing it should you have the chance. You need at least one month. It is possible that severe allergy may mask the benefit.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-35173147802536156192016-01-31T14:50:43.168+01:002016-01-31T14:50:43.168+01:00Hi peter, you have done a great deal of research i...Hi peter, you have done a great deal of research in autism. You not only share all the information you find out through your blog but also clarify doubts. I don't know what to say ..but thank you. <br />Few weeks ago my daughter poured extra soap into her bath 'to make it more bubbly' but next day woke up with very itchy and persistent eczema all over her body(which won't go away). She has had eczema problem from birth. She is also allergic to tomatoes and many other foods and the symptom is 'gastric reflux' that makes her very uncomfortable. She doesn't have any major behavior problems like rage or aggression. I tried through different routes to help her but never thought about channelopathies. I'm trying to educate myself about ion channels and ion channel diseases. In the meantime I got hold of bumex. I don't know if I should try and address her allergies first before trialling Bumetanide...Anonymoushttps://www.blogger.com/profile/14374293358968674516noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-3150481834198748662015-09-24T20:52:11.604+02:002015-09-24T20:52:11.604+02:00Verapamil is Generally well tolerated but, as with...Verapamil is Generally well tolerated but, as with most drugs, some people get side effects. If you give it with food you might avoid the gas, also some probiotics stop gas. I would only use verapamil if it has some positive impact. You may find changes over time, so if something develops in the future verapamil might become more useful.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-49634694400053487122015-09-24T18:33:42.307+02:002015-09-24T18:33:42.307+02:00Great information. My daughter is autistic and in ...Great information. My daughter is autistic and in Cortagen genetic test we found that she has a variant of uncertain significance in CACNA1C. We have been trying Verapamil in different dosages. Her Vocal stimming is increasing with 20mg or more dosage. We also see symptoms like passing more gas. Are these common symptoms with Verapamil. She doesn't have SIB but flops when she is upset. We are hoping Verapamil will help in reducing that kind of behavior.<br /><br />Thanks<br />AGAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-87884375446601769392014-12-09T10:24:18.817+01:002014-12-09T10:24:18.817+01:00(PART 2 - there is a limit on the number of charac...(PART 2 - there is a limit on the number of characters)<br /><br />Here are my answers. <br /><br />1. Your bones are the body’s store of calcium. There is a lot of it. A simple blood test can tell whether the level of calcium in the blood is normal. The body uses calcium ions to send signals and so what really matters is the flow of calcium ions into and out of cells. You could have normal levels in your blood, but have a dysfunction somewhere in the “calcium channel signaling network”. Verapamil blocks a specific type of channel called “L type”. In particular it affects one called Cav1.2. This channel is actually a protein and it is controlled by a gene called CACNA1C. There are several known dysfunction in this gene, called SNPs, that are known to occur in autism and schizophrenia. So to check if Verapamil should work, it might well be possible to go to a gene lab and check Wyatt’s blood looking for Single Nucleotide Polymorphisms connected with this gene. But there are other calcium channels affected by Verapamil and also some potassium channels. I think the key gene it is CACNA1C, but it could be one that is associated with one of the other channels that Verapamil blocks.<br /><br />2. I read the research to determine if there was likely to be a calcium channel problem. I ended up with L types in general and Cav1.2 in particular. I reviewed the research on all the possible channel blockers for safety, use in neurological conditions, pediatric use etc. I ended up with Verapamil. I checked the safety aspect with various doctors. The smallest pill available to me is 40mg. There are very much bigger doses. I decided to test half of a pill. I crush it and it is taken as liquid with juice/water.<br />I think 10 mg taken with food might have no effect in my son.<br />We now use 40mg taken three times a day. If a stressful condition arises and he missed a dose, SIB can and does return, like yesterday. 10 minutes after Verapamil, peace is again restored. <br /><br />3. Aggression is often triggered by little things, like a missing Lego brick or the refusal to be given something that was expected. Here the best thing is the behavioral approach of getting used to surprises and not getting your own way. By being protective to a child, it is easy to make a small problem into a big problem. For example, my son used to get very upset by the sound of babies crying. The solution was to talk about why babies cry and to expose him to that very sound he hates, over time he builds up a tolerance and understanding. Now when he hears a child at school crying, he always goes to see what has happened.<br />The use of NAC did make a big reduction in stimming and OCD.<br /><br />4. I am sure there are many un-named syndromes in autism, but problems separating from Mom are quite normal. PANS occurs very rapidly, so I doubt he has it. We had a huge problem when our son’s 1:1 assistant left after a few years. This triggered a year-long regression with lots of SIB.<br />The solution is to introduce lots of people and not be dependent on any one person, even Mom. Then, when one favorite has to leave, it does not matter because another fun person arrives or fun activity starts. This may be easier said than done, but it is the solution. <br />Fun people can be relatives, small children (probably girls) who want to engage with Wyatt, or a part-time student therapist. There are a surprising number of 20-25 year olds who really want to work/play/engage with kids with autism. They have a lot more energy than Dad/Mom. Look for people studying psychology or special education.<br /><br />I hope that helps.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-71407170218519490272014-12-09T10:22:50.648+01:002014-12-09T10:22:50.648+01:00This comment has been removed by the author.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-68311565825800846752014-12-09T10:21:28.807+01:002014-12-09T10:21:28.807+01:00Hi JB, thanks for your extensive explanation.
Fir...Hi JB, thanks for your extensive explanation.<br /><br />First of all, Wyatt’s problems with food texture and swallowing are not so unusual and neither is the separation anxiety when Mom has to leave.<br /><br />Some people are feeding purees to kids older than your son. The problem is that you may never be able to stop. The same is true for toilet training, problems going to the dentist, getting a haircut etc. The longer it goes on being a problem, the bigger the problem becomes. We know a boy aged 5 who “could not drink water”. In the end, no matter how awful the process might be, you have to go back to purees eaten with a spoon. Slowly introduce little lumps and then bigger ones.<br /><br />With SIB, some people let it play out. I just don’t allow it. I would do unexpected things like tipping my son upside-down, or getting down to the level of his eyes and bark like a dog, basically anything. Now he knows I will not allow SIB. The result is that now I can just sit him down, talk to him, redirect his attention and calm him. SIB is self-perpetuating and becomes an acquired behavior. In a small child it can be stopped without drugs. Drugs may stop it starting in the first place. <br /><br />My blog is all about drugs that can counter the underlying dysfunctions in autism, but even more powerful are the behavioral interventions. I recommend both. Some behavioral interventions require what comes down to “tough love” which many Mom’s find almost impossible.<br /><br />As you know, I have read a lot of medical research, but I am not a doctor.<br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-11754524449811950792014-12-08T20:40:42.688+01:002014-12-08T20:40:42.688+01:00Hi Peter.
Let me give you some general backgrou...Hi Peter. <br /><br />Let me give you some general background on my son before I get to my questions. <br /><br />My son Wyatt is 4 yrs old and 17kg/37lbs. Starting around 18 months of age, many of the common signs of autism started appearing in my son. One of the unique issues my son has always had is an extreme aversion to chew and swallow solid food. When he was a baby, swallowing purees was not a problem. As we transitioned him to solids, he would try to swallow them whole without chewing, causing him to choke and gag. His diet became solely liquid based. He has been fed via G-Tube since. <br /><br />As I mentioned in a couple of other posts, he has always had issues with SIB and aggression. He was prescribed Risperdal. We went up and down in dosage, but never really saw any conclusive evidence that it did anything to alleviate this behavior. Wyatt also exhibits extreme anxiety and a lot of OCD behaviors. Guanfacine and Zoloft were also prescribed, but no tangible results were noticed. Over the past couple of months, this behavior has skyrocketed. It got to the point to where my wife and I had to pin him down in order to keep him from hurting himself or others. He was hospitalized in early November and admitted to the inpatient psych ward. While there, the Psychiatrists tried Seroquel, Abilify, Prozac, and a Clonidine patch. He got a mildly better and we were discharged. <br />Extreme aggression, SIB, and OCD continued at home though. All throughout this ordeal, I was reading your blog and eager to try some of your therapies, but really did not know how to approach the doctors about them. I bought Super Sprouts and NAC, but did not want try them until after we got his raging under control. After surviving another day of rage with my son, one night my wife suggested that we just try the NAC and Sprouts. We did the following morning, and the results of broccoli sprouts + NAC were very noticeable. His mood changed from a constant state of agitation, to happiness. However, his OCD and anxiety is sky high, and a rage will occur if he or someone else cannot comply with some bizarre OCD demand he has.<br /><br />My son’s psychiatrist approved trying Verapamil. Since my son is fed entirely through a G-tube, tablets were out of the question. She had a compounding pharmacy make a liquid version based on a 50mg/ml. Our instruction was to take 0.2ml once a day. That works out to 10mg a day. We tried it yesterday morning, and did not see any improvement. In fact, my wife says it might have made things worse.<br /><br />0.2ml is extremely difficult to work with. The pharmacist explained that perhaps a lower concentration would work better. By the time 0.2ml travels through the tube into my son's stomach, I wonder how much an already tiny amount of liquid is really getting there.<br /><br />So we decided to stop Verapamil after 2 days. So far, the only thing we can conclude is that Verapamil does not work on my son, the dose is too small, or the tiny dose never really got there to begin with. Perhaps we will try it again if we can get a lower concentrated dose compounded for us.<br /><br />So after all of that, here are my questions.<br /><br />1. Are you aware if a test for excess calcium is possible? Perhaps there is for the blood, but would that mean anything about physical calcium and calcium signaling in the brain? It seems like a positive test would build a strong case for Verapamil.<br /><br />2. How did you come up with Monty’s Verapamil dose amount? <br /><br />3. We have noticed that most of my son's episodes with extreme aggression and SIB are triggered by a bizarre OCD request not complied with. Have any of your therapies had success with OCD?<br /><br />4. Another major problem my son has right now is extreme separation anxiety from his mom. I read your one of your posts last night about PANS. But, from what I can tell, PANS seems more like regressive autism in that it suddenly affects a normal child. My son fits the classic onset autism model. Is PANS something to consider though?<br />JBhttps://www.blogger.com/profile/17769827238808423873noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-34797603983549790252014-08-24T13:55:55.069+02:002014-08-24T13:55:55.069+02:00It really depends where you live. In the US there...It really depends where you live. In the US there are many doctors prescribing drugs "off-label", based on some evidence that they might help. In some countries pharmacies follow the rules much less strictly. In some countries, like the UK, off-label prescribing is almost forbidden and pharmacies work by the book. Then people go to internet pharmacies.<br /><br />The rules are there to protect you, which is good. But then doctors have to keep an open mind to new uses of existing drugs, which they do not. The cost of approving an existing generic drug for use in autism is about $3 million, so it is not going to happen very often.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-38201826646808127592014-08-23T19:23:54.874+02:002014-08-23T19:23:54.874+02:00How did you have verapamil to try on him? I am ha...How did you have verapamil to try on him? I am having a really rough time finding things without a prescription.Anonymousnoreply@blogger.com