tag:blogger.com,1999:blog-655962722302095847.post2257807493009777749..comments2024-03-28T22:33:35.806+01:00Comments on Epiphany: Time to update the Autism Polypill?Peter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger41125tag:blogger.com,1999:blog-655962722302095847.post-26295712187377302122018-08-28T10:08:54.126+02:002018-08-28T10:08:54.126+02:00Checked the facebook page, buncha smiling people, ...Checked the facebook page, buncha smiling people, lots of promotion and links trying to get you to buy stuff... no thanks.<br /><br />Why dont you go into detail a bit more about your experience with this as your message seems way too brief for the positivity your trying to bring along with it.<br /><br />Im not saying it didnt help your son, but im warning others to be cautious as theres a lot of snakeoil on the internet.<br /><br />FYI: quercetin has potent effects on nACHr7 and liver enzymes (such as cyp1a1 and cyp1b1), its not just about its anti-allergy effects... you should look into it.Aspie1983https://www.blogger.com/profile/14186355234793738967noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-54361357759407603342018-08-28T04:56:47.607+02:002018-08-28T04:56:47.607+02:00Disclaimer:This is not a Magic bullet
Please try...Disclaimer:This is not a Magic bullet<br /> <br />Please try Nemechek Protocol if you have child with asd<br />we had good gains that we couldn't get from 4 years of biomedicine and $$$$$ within 1 month of NP <br /><br />Good olive oil, prebiotic, fish oil, (Quercetin for histamine issues) thats alk it takes. <br /><br />Join there Nemechek protocol FB pages for more information.<br /><br />Sorry about my bad English, just wanted to share what worked for my son. <br />Rizahttps://www.blogger.com/profile/17553698982629217172noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-27704686827539037232018-07-08T18:59:55.556+02:002018-07-08T18:59:55.556+02:00I am not sure a GABA agonist is going to help. I t...I am not sure a GABA agonist is going to help. I tried Picamilon, which breaks down inside the brain to produce GABA itself, and the result was not good. Taurine has many effects and is widely used in autism.<br /><br />I would use bumetanide before thinking about KBr.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-42278140747128380892018-07-08T18:44:25.994+02:002018-07-08T18:44:25.994+02:00Hi Peter,
Firstly - thank you for writing this bl...Hi Peter,<br /><br />Firstly - thank you for writing this blog. Found it by accident when looking for treatment for my son.<br /><br />Quick question, would Taurine be ok to use as a GABA agonist once one is established on KBr?MSnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-26280051393991920832017-07-19T10:11:27.237+02:002017-07-19T10:11:27.237+02:00Agnieszka, I don't think Baron-Cohen would lik...Agnieszka, I don't think Baron-Cohen would like my blog; I have suggested he retire and make space for the new generation of clever autism researchers.<br /><br />Is Alzheimer's a disease, disorder or condition? It really does not matter. What matters is Grandma does not recognize her own daughter anymore.<br /><br />Baron-Cohen should have more clever things to think about than whether Autism a disease, disorder or condition etc. It is more about self-promotion and lack of something more useful to write about. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-28213279572163775792017-07-18T23:03:57.644+02:002017-07-18T23:03:57.644+02:00Thanks. Bumetanide seemed initially helpful for th...Thanks. Bumetanide seemed initially helpful for that child, with issues after few weeks of use. This obviously calls for K+ blood level check and professional hydration monitoring, but at the moment medical guidance seems out of reach. <br /><br />It is a coincidence, but this situation seems like a comment to your new post on neurodiversity. How can one expect proper medical care if a leading researcher compares autism to being left-handed? <br /><br />http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12703/full<br />Agnieszka Wroczyńskahttps://www.blogger.com/profile/04738535364585304041noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-560832505612179022017-07-18T16:17:39.662+02:002017-07-18T16:17:39.662+02:00Agnieszka, there are indeed people for whom bumeta...Agnieszka, there are indeed people for whom bumetanide is not a good fit. <br /><br />Some people are allergic to sulfonamide drugs, some young children cannot cope with the diuresis and some people have a problem have a problem with the potassium loss.<br /><br />The only downside for most people with KBr is the chance of some spots on the face. As long as the parents are not bothered by this, KBr would seem a good choice if you cannot use bumetanide.<br /><br />If KBr is effective it would be then worth making the extra effort to measure K+, so that bumetanide could be used. If KBr works then almost certainly Bumetanide will also.<br /><br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-6230553743987077462017-07-18T15:08:53.590+02:002017-07-18T15:08:53.590+02:00Dibro-Be is available in Poland and prescribed for...Dibro-Be is available in Poland and prescribed for Dravet epilepsy by some neurologists. Bromide blood level can be measured here also.<br /><br />I've been using Dibro-Be for a few months as an add-on to bumetanide. Cognitive effects (=more awareness and learning abilities) and the will to interact with peers increased clearly after the first month of 1/4 tablet use. This could be easily noticed in comments of teachers, other family members etc. Earlier than 4 weeks nothing could be seen. <br /><br />After increasing the dose to 1/2 tablet I could also see a couple of spots which disappeared on lower dose. Somehow this did not happen again when I increased the dose back to half a tablet. My son is 9yo and ~30 kg.<br /><br />He needs to have Dibro-Be dissolved in water and can't tolerate the tablet because of GI distress. He could never tolerate any potassium tablets. <br /><br />Recently I found his blood chloride concentration slightly elevated which could be KBr related ("spurious hyperchloremia"). I am not sure if this is of any significance. <br /><br />In last weeks he had his worst mast cell activation flare ever, presenting as PANS, but I doubt it could be KBr related... Well, I hope so.<br /><br />Peter, basing on what is known about KBr mechanism of action, do you think it is a good idea to use it as monotherapy in a child who seems to respond to bumetanide, but long term use is problematic (no access to blood K+ monitoring etc). Actually asking on behalf of another reader, whose child has been on low dose clonazepam and antihistamines already. <br /><br /><br /><br />Agnieszka Wroczyńskahttps://www.blogger.com/profile/04738535364585304041noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-19305983407025653222017-07-11T09:46:21.274+02:002017-07-11T09:46:21.274+02:00KBr if given at half a tablet a day per 50kg will ...KBr if given at half a tablet a day per 50kg will take 4+ weeks to begin to show effect. These effects seem to be very similar to what you see with bumetanide, so there is a cognitive improvement. These effects are in addition to those from bumetanide, so it is like bumetanide +. As with bumetanide the effect is entirely reversible. This is a much lower dose than that used by children with epilepsy, so the downside is likely to be limited to a couple of spots. Bumetanide will take a couple of weeks to show effect and you will lose these effects after a couple of days of cessation. KBr will fade away much more slowly.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-7076064630737635152017-07-11T00:16:47.360+02:002017-07-11T00:16:47.360+02:00For those that are interested dibro be mono can be...For those that are interested dibro be mono can be sourced from goldphmara site . But would like to know from Peter and others how you quantify whether it works for your son while he is already bumetanide. Did notice new behaviours and cognition. While also at your dosage how much side effects have you noticed particular bromo acne. As was wondering if started on kb-r for 4 weeks then introduced bumetanide how would think that might go. Thanks in advance for any commentsAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-3200439687914862672017-03-12T15:10:15.339+01:002017-03-12T15:10:15.339+01:00In the US the FDA have a scheme where doctors can ...In the US the FDA have a scheme where doctors can officially apply to use a drug not licensed in the US. So Dr Chez could use this scheme and then prescribe Dibro-Be mono, the German drug. Then the patient could buy it from a German pharmacy all entirely legally. I am sure the German/Austrian authors of the KBr papers would talk directly with Dr Chez if he contacted them.<br /><br />If you cannot access Dibro-Be mono, the other choices are just the Kbr powder sold for non-medical purposes, or the veterinary form. The best thing would be for Chez to read up on the literature (which is in English) and contact the German/Austrian doctors. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-78350656151235956492017-03-12T07:30:40.914+01:002017-03-12T07:30:40.914+01:00Peter, I had passed on your posts on KBr to a frie...Peter, I had passed on your posts on KBr to a friend of mine who has a young child with severe refractory epilepsy and autism. Dr. Chez is their doctor and when she brought it up with him, he was quite interested, but unhappy with the politics of big pharma which has led to it not being available here. <br /><br />I am sure my doctor would also be willing to try it for my daughter, any ideas regarding sourcing? <br /><br />Many thanks. RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-10733621946925960002017-03-10T19:40:10.971+01:002017-03-10T19:40:10.971+01:00SB, Abilify is an antipsychotic drug. It does ent...SB, Abilify is an antipsychotic drug. It does entirely different things to Bumex/Diamox.<br /><br />Whether Diamox will help depends on what dysfunctions and symptoms your son has. I do not use it. Some people use 1/4 of a 250mg tablet.<br /><br />My son began to use single words before he was 4. He uses the complexity of speech needed to get him what he wants or to answer someone's question. He is not going to enter into rambling conversations like his brother and likely never will. He would be happy to read aloud or sing a song. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-17730233761763211692017-03-10T18:34:47.401+01:002017-03-10T18:34:47.401+01:00Hi Peter and other experts
I would like to do ...Hi Peter and other experts<br /> I would like to do a trial of Diamox?Do you know the recommended dosage for a 37 lb, 5 year old.Bumex did not work for my son.Do you think Diamox would work at all?<br /><br />Also,I would like to try Clonazepam later on.I am unable to find any pharmacy that <br />would supply it.Any recommendation how to order online?<br /><br />What is the difference between Abilify and the other treatments(Bumex/Diamox) etc?Both of them affect the brain.<br /><br />Peter,at what age did you child start speaking?I mean knowing the context and talking in full sentences.<br /><br />Thank you for all your help<br />SBAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-4978356747884622822017-03-10T17:13:28.700+01:002017-03-10T17:13:28.700+01:00I don't mean to discourage you from the Pomgen...I don't mean to discourage you from the Pomgenex, but just remember that I also looked for anecdotal commments about hyperactivity on broccoli sprouts and did not find any at that time. <br /><br />Also I don't think it's common to stop sleeping from Mito-Q and I don't know any other child with sleep issues on broccoli sprouts.<br /><br />Re prednisone: my son is diagnosed with mast cell activation syndrome and prednisone is used for MCAS flare-ups. That's what he got it for and this was consulted with immunologist. Well, I cannot say I did not have this study at the back of my mind:<br />https://www.ncbi.nlm.nih.gov/pubmed/24885033<br /><br />Prednisone controlled MCAS symptoms well, but also after a week or two his speech got better and what was most surprising he started speaking English during language lessons at his preschool, which he always attended, but never spoke before. After three weeks he was almost manic and stopped sleeping, so I quit prednisone. Unfortunately all good effects were temporary.<br /><br />Agnieszka Wroczyńskahttps://www.blogger.com/profile/04738535364585304041noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-46918438631351162662017-03-10T00:45:38.729+01:002017-03-10T00:45:38.729+01:00Hummm, I will take all of that into consideration....Hummm, I will take all of that into consideration. I suppose I will just do the Pomgenex right after school except on speech therapy days so it has enough time to work through his system before bedtime. My son is now around 100 pounds (45 kilos) at age 8 so maybe it is time to change things up a little bit.<br /><br />Also, why did give your son prednisone? Coincidentally I have some for some ankle inflammation that subsided which I was too busy/distracted to use for myself (turns out barefoot running on a treadmill fixed that problem better than any drugs would have). Just wondering.Tylernoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-67766465433589290522017-03-09T18:18:20.271+01:002017-03-09T18:18:20.271+01:00Tyler, my son got hyperactive and finally ended up...Tyler, my son got hyperactive and finally ended up with full insomnia on the Super Sprouts. Otherwise the effects were genuinely good, but one needs to sleep at least sometimes. The same happened to him on prednisone and Mito-Q.<br /><br />With regard to your previous comment about Bumetanide dosing, how much does your son weigh? In France they use Bumetanide 2 x 1 mg off label in children of 25kg weight or more. I have switched to 2 x 1 mg recently with clearly visible cognitive effect, which apparently also showed up on iq testing that each child is required to have done in my country applying for special ed services at school. <br /><br />My son is prone to hypokalemia and with 2 x 0,5 mg Bumetanide he required 48 mEq K daily, however with increased Bumetanide dose he did not need any more potassium. The only issue in him is keeping him hydrated enough. This is manageable, compared to gains on higher dose.<br />Agnieszka Wroczyńskahttps://www.blogger.com/profile/04738535364585304041noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-32687718442168046682017-03-09T15:36:53.989+01:002017-03-09T15:36:53.989+01:00I would like to know about functioning of MAO B an...I would like to know about functioning of MAO B and COMT to see if he is breaking down excess neurotransmitters. I am trying to get MTR working with 5-Methyl THF in the hopes of signalling MTHFR......Off on a tangent...What about Tyrosine for Dopamine sites on MAO B for sensory behavioral regulation?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-64548251832042592042017-03-09T15:30:53.564+01:002017-03-09T15:30:53.564+01:00What if you have a homozygous variant MAO-A? It w...What if you have a homozygous variant MAO-A? It would not be beneficial to take 5-HTP right. MAO-A should be functioning so you can process the 5-HTP right?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-65981376778416741282017-03-09T00:52:06.332+01:002017-03-09T00:52:06.332+01:00Is that per day or per dose. 5-HTP is recommended ...Is that per day or per dose. 5-HTP is recommended to be given 3 times a day, but that amount times 3 was not good for my son.Tylernoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-51198882076634760122017-03-09T00:50:12.201+01:002017-03-09T00:50:12.201+01:00I used the Super Sprouts first but I think much of...I used the Super Sprouts first but I think much of its efficacy was gone by the time it made its trip in hot shipping containers from Australia to here in the states. The product I am using at the moment is the Enduracell Pomgenex which has Pomegranate juice concentrate, Broccoli Sprouts with Myrosinase, and Coconut Water. Could not find any research or anecdotal comments about any of them causing hyperactivity in children, rather the opposite (Pomegranate compounds supposedly activate nrf2 as well or so I read). I am using a lower amount than the recommended amount for an adult (especially since it is so expensive), so your guess on thyroid hormone is what I am going with for now because I have no better ideas myself. Maybe a one day on and one day off routine might work better. If I recall correctly, the original broccoli sprout extract study had participants dosing three times a week in high doses (I could be wrong so don't hold me to this because this is just from memory).Tylernoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-8364003204723968812017-03-08T23:56:02.169+01:002017-03-08T23:56:02.169+01:00Hi Petra, I'm happy to share. I can't say ...Hi Petra, I'm happy to share. I can't say for sure if 5-htp is the cause of not, but it certainly hasn't had any negative impact. My daughter is about 14kg, so I'm using about 14mg (eyeballing the amount based on capsule size) in the morning. <br /><br />All the best!<br /><br />AJ Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-77883992485724861102017-03-08T20:39:06.304+01:002017-03-08T20:39:06.304+01:00Thank you for sharing that. I have had 5htp ready ...Thank you for sharing that. I have had 5htp ready to give for a couple of weeks but feel reluctant. I used one tablet 100mg myself to see if it's effective for serotonin increase and it was indeed, still felt some nausea and dizziness during the first couple of hours.<br />I have started on inositol 2g/day before giving 5htp.<br />Really hope it has positive long lasting effect.Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-29226212101802307242017-03-08T17:45:07.001+01:002017-03-08T17:45:07.001+01:00Hi everyone,
Just an update you may find of inter...Hi everyone,<br /><br />Just an update you may find of interest. I added 5-htp to my treatment protocol and noticed a minor improvement right away. Speech and mood appear to have gotten s little better, and it's only been a couple weeks. It could just be normal improvement, but it coincided with 5-http so I thought I would share. I'm using 1 mg per kg.<br /><br />AJAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-35812681639654409702017-03-08T17:41:50.055+01:002017-03-08T17:41:50.055+01:00Hi Tyler, good point about drainage, agree that th...Hi Tyler, good point about drainage, agree that this could be the cause of increased pressure.<br /><br />I'm going to start on Rosmarinic acid and will report my findings. Aldo using full spectrum pomegranate as pomegranate constituents are carbonic anhydrase inhibitors. <br /><br />You're right about Perilla oil, which was one option I looked at for Rosmarinic Acid.<br /><br />Fingers crossed that we can find something new to help many of us.<br /><br />AJAnonymousnoreply@blogger.com