tag:blogger.com,1999:blog-655962722302095847.comments2024-03-19T08:26:10.761+01:00EpiphanyPeter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger16729125tag:blogger.com,1999:blog-655962722302095847.post-50708708682084898172024-03-19T08:10:49.873+01:002024-03-19T08:10:49.873+01:00Merhaba Apinke prednizon ile tedavideki doz nedir....Merhaba Apinke prednizon ile tedavideki doz nedir. 5 yaş 21 kilo oğlum için kullanmak istiyorum. 5 yaş 21 kilo için hangi dozu kullanmalıyım. Pandalarla başımız belada. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-30650208771768483702024-03-18T10:57:35.293+01:002024-03-18T10:57:35.293+01:00Apinke, AMBRA1 is an autophagy gene and verapamil ...Apinke, AMBRA1 is an autophagy gene and verapamil can potentially increase autophagy.<br /><br />It is advised not to combine propranolol with verapamil. So it is one or the other.<br /><br />Leucovorin does work for a large subgroup of autism and so it is a good idea to try it. First see if your son responds to it. Increased acidity in the stomach increases how much leucovorin is absorbed. This is the why a betaine HCL capsule might give a benefit (the HCL is hydrochloric acid). For some people oral leucovorin is not sufficient and they need to take it intravenously. I suggest you start with just leucovorin (calcium folinate).<br /><br />There is a lot of trial and error involved, there is no better alternative at the moment.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-80697113050677164432024-03-18T10:11:01.403+01:002024-03-18T10:11:01.403+01:00Shana, Periactin does help some so give it a try.
...Shana, Periactin does help some so give it a try.<br /><br />I think you have to keep going with your PANS therapy until all symptoms have gone, otherwise it will just come back.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-78950479275719695282024-03-18T01:06:38.862+01:002024-03-18T01:06:38.862+01:00Hi Peter and Stephen,
After a week of ibuprofen my...Hi Peter and Stephen,<br />After a week of ibuprofen my son’s PANS/PANDAS flare seemed to be done. The ocd behavior continued as well as eneuresis but I figured that might require behavioral strategies. However on Friday the rages came back so I gave ibuprofen again. It worked but now I have had to go back to giving ibuprofen all weekend because that is the only thing that keeps the raging at bay. Is this typical? I am wondering if maybe there is some other pain he is experiencing or migraines? Or maybe the PANS just wasn’t done yet? The doctors near me don’t believe in PANS unfortunately. However on the plus side if this continues the neurologist wants to put him on Periactin in April which I am excited about us trialing. What are your thoughts? I really appreciate all of your help!<br />Thanks!<br />Shana Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-63910559755237133192024-03-17T20:48:46.009+01:002024-03-17T20:48:46.009+01:00Hi Peter
I was reading a comment of yours and you...Hi Peter <br />I was reading a comment of yours and you commented the Betaine HCL helps in absorption of leucovorin.We are having emerging speech so I was thing of adding leucovorin maybe it would hasten things.What do you think about adding Betaine to it and what dose for a boy of 10years weighing 38kg.<br /><br />What can I also use for OCD.We are using NAC though it helps ,I was thinking if something else would work.I added low dose propranolol and I think its helping as reports were better this week from school though he has a cold too so I am unsure maybe its the cold that is keeping him calm as he's not 100 percent himself .<br /><br />or do you think verapamil will be better as he had this autophagy AMBRA1 gene when we did the genetic testing.<br />Thank you<br />ApinkeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-87892860900169556622024-03-17T18:03:59.195+01:002024-03-17T18:03:59.195+01:00Hi Peter, just an interesting thought. I think IVI...Hi Peter, just an interesting thought. I think IVIG might works by decreasing the B cells that create folate receptor autoantibodies. If an ASD child has another inflammatory pathway like LPS and Il-1b I don't IVIG will work. However, it might provide a partial response if they have folate autoantibodies.<br /><br />https://pubmed.ncbi.nlm.nih.gov/25407649/<br /><br />StephenUnknownhttps://www.blogger.com/profile/04570315027088928366noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-35410600404363452382024-03-15T02:50:15.129+01:002024-03-15T02:50:15.129+01:00You can get leucovorin from Greece, without prescr...You can get leucovorin from Greece, without prescription, Calcifolin!also you can try ordering online!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-12156413902001610742024-03-14T16:31:20.889+01:002024-03-14T16:31:20.889+01:00Thank you Peter. My son responded to Bumetanide (l...Thank you Peter. My son responded to Bumetanide (lower irritability but no cognitive or language gain). He is on Guanfacine and we are ramping up Naltrexone. We are hoping this will minimize possibility of aggression before trialing Leucovorin. This is all via a naturopath/biomed. Recently saw a psychiatrist who recommended Abilify/aripiprazole 2mg - we don't want to go this route - given the side effects. We need a solid breakthrough though - hoping we find something that really helps.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-46115253808610392082024-03-14T14:00:34.533+01:002024-03-14T14:00:34.533+01:00Xolair would probably help ALS as well.
Neutrophi...Xolair would probably help ALS as well.<br /><br />Neutrophils: a subgroup of neglected immune cells in ALS<br /><br />https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1246768/fullAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-71039222109633648802024-03-14T13:59:19.994+01:002024-03-14T13:59:19.994+01:00Nice! Ever since Ling mentioned the messenger post...Nice! Ever since Ling mentioned the messenger post I've been down a rabbit hole. If we want to lower the inflammation (Il-1b) why not lower the activated neutrophils that produce them? I think that's how Xolair works in a subset of ASD. <br /><br />Omalizumab and COVID‐19 treatment: Could it help?<br /><br />https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7300457/<br /><br />Peripheral Low Level Chronic LPS Injection as a Model of Neutrophil Activation in the Periphery and Brain in Mice<br /><br />https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10602194/<br /><br />-StephenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-26164653168221038132024-03-14T07:26:47.717+01:002024-03-14T07:26:47.717+01:00In the research there are people with negative FRA...In the research there are people with negative FRAT results who do respond to Leucovorin. So even though the chance of success is lower, it may be worth a shot.<br /><br />I did not try taurine to solve the aggression problem. We do have speech and it seemed to increase with Ponstan and Amlodipine (as a Verapamil alternative).<br /><br />Aggression in older children is a major risk, so you would need to careful. Maybe try and fix the aggression before the speech?Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-79653842883472337932024-03-14T07:17:09.649+01:002024-03-14T07:17:09.649+01:00Stephen I am not aware of anyone trying it.Stephen I am not aware of anyone trying it.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-65837140075124800802024-03-14T07:15:52.062+01:002024-03-14T07:15:52.062+01:00Stephen, it is also supposed to help in Parkinson’...Stephen, it is also supposed to help in Parkinson’s. I told a friend whose mother has Parkinson’s and already takes a diuretic for other reasons. She switched to Bumetanide and regained the ability to have conversations with those around her. It only improved cognition not motor issues.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-81717780690904887342024-03-13T22:53:44.709+01:002024-03-13T22:53:44.709+01:00Sort of off topic, but bumetanide helps with ALS.
...Sort of off topic, but bumetanide helps with ALS.<br /><br />Efficacy and Safety of Bumetanide in Patients with<br />Amyotrophic Lateral Sclerosis: A Randomized<br />Controlled Clinical Trial<br /><br />https://assets.researchsquare.com/files/rs-265649/v1/6476e402-9d49-44df-b3c8-e8770875e404.pdf?c=1631878460<br /><br />-StephenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-40842541520295259922024-03-13T15:59:49.975+01:002024-03-13T15:59:49.975+01:00Hi Peter, if FRAT test is negative for both bindin...Hi Peter, if FRAT test is negative for both binding and blocking antibodies, will Leucovorin even help? This is a for a mostly non-verbal teen prone to aggression, so worried about trialing Leucovorin. I see some suggestions on using Taurine along with it in your blog from other readers, wondering if you ever tried it with Leucovorin and if it helped at all. Thank you Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-17144534653342716082024-03-13T11:21:03.994+01:002024-03-13T11:21:03.994+01:00Hi Peter,
Do you know if any of your readers have...Hi Peter,<br /><br />Do you know if any of your readers have used Anakinra? The science behind it makes sense. Especially if Ponstan is helpful. Stephennoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-60782389071102210762024-03-12T15:50:18.900+01:002024-03-12T15:50:18.900+01:00Bumetanide gradually lowers chloride in neurons an...Bumetanide gradually lowers chloride in neurons and when you stop taking it the level slowly goes back to the start point. So, if you are taking a journey by plane and diuresis would be a problem you can skip taking bumetanide for one day with no problem.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-24212534624364510512024-03-12T15:31:50.727+01:002024-03-12T15:31:50.727+01:00Aspie83,
Your son is lucky he has such an observa...Aspie83,<br /><br />Your son is lucky he has such an observant father who also knows where to look for answers. Your post above is full of useful details.<br /><br />For sleep, I agree normal melatonin is only helpful for sleep initiation. You could either try slow-release melatonin (three small 1 mg tablets in yoghurt could eventually work even if tablet swallowing is hard at your son's age) or go the old H1-antagonist way (allergy drugs that pass through the BBB). Or both, if needed. You might not need these solutions forever, but for now it sounds like it would help the whole family. <br /><br />For ritalin, it has an effect on dopamine and norepinephrine so now you have a few topics to explore. Internet is full of people who are looking for alternatives to the usual ADHD medications and you already know what worked and what didn't for you. What about PDE-inhibitors, for example? Bacopa? Tyler had a few posts on regulating brain dopamine here somewhere on the blog... <br />Of course, dopamine could be a downstream effect (and if so usually with serotonin abnormalities - serotonin is linked to aggression). So it might not be the ultimate answer, but one that will help normalize life.<br /><br />If NAC or antioxidants in general are not working as you wish, maybe try a few interventions aimed at energy/mitochondrial function. NAD? keto? And then as a third step try things for neuroinflammation. <br /><br />Some of it will work.<br /><br />My best wishes to you,<br />/Ling<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-89252955500125714752024-03-12T14:37:24.973+01:002024-03-12T14:37:24.973+01:00Sorry, I think it ends in .org (not .com)
bestpri...Sorry, I think it ends in .org (not .com)<br /><br />bestprice4you.orgAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-34488299744476741602024-03-12T14:33:35.329+01:002024-03-12T14:33:35.329+01:00Peter, thank you, I will give it to him at 3:00 in...Peter, thank you, I will give it to him at 3:00 in the afternoon (or 6:00 pm, on the days that he has ABA after school). We restarted 1 mg on Saturday and I plan to increase the dose to 2 mg once a day after a week or so. <br /><br />I’m curious about chloride levels and bumetanide’s short half-life—How quickly do chloride levels start to rise back up again after the bumetanide has been excreted? Can bumetanide lower the chloride levels incrementally over time, even though it’s eliminated from the body within a few hours? Or is it more like, say, acetaminophen or Ritalin, where symptoms return to baseline soon as the medication wears off? Meaning, if my son were to take bumetanide once a day at 3:00 pm (or 6:00 pm, on the days he has ABA), over time would he still reap the benefits during the school day? <br /><br />And Peter, thank you so much for the info on milk teeth and cytokines. I was poring over your posts yesterday and learned that cytokines are often higher in ASD; and that they can cause (Neuro? systemic?) inflammation when the adult teeth start to come in. This could explain my son’s catatonia-like behaviors that have been on the rise recently. He had his front baby tooth extracted over a year ago, and the adult tooth only started growing in about two months ago, which is when his molars also started to erupt. So after reading your post, I gave him ibuprofen last night and he seemed a bit better, more lively and responsive then he’s been in a couple of weeks! I gave him another dose of ibuprofen this morning before school, hopefully it helps! Thank you again, Peter!<br /><br />Katynoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-43413967474813269122024-03-12T14:14:16.005+01:002024-03-12T14:14:16.005+01:00https://www.cheapmedicineshop.com/faq
Here is the...https://www.cheapmedicineshop.com/faq<br /><br />Here is their website if the whats app is not working. Unknownhttps://www.blogger.com/profile/04570315027088928366noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-43724921886216154182024-03-12T10:23:24.544+01:002024-03-12T10:23:24.544+01:00@Katy,
That domain is for sale bestprice4you.com@Katy,<br /><br />That domain is for sale bestprice4you.comAspie83noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-8074060257044178222024-03-12T10:22:40.934+01:002024-03-12T10:22:40.934+01:00@Unknown,
Unfortunately that phone number does no...@Unknown,<br /><br />Unfortunately that phone number does not exist on whats app. I entered it on my phone and it said the number is not on whatsapp.Aspie83noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-66379530048553567042024-03-12T02:50:32.618+01:002024-03-12T02:50:32.618+01:00I have tried it in the past on myself. More recent...I have tried it in the past on myself. More recently I've tried zeolites (also on my son) which have a similar effect but do not merely stay in the digestive tract but can go throughout the body and remove heavy metals. I passed a bunch of parasites a couple days after taking only a few sprays.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-34569615396142316712024-03-11T21:56:38.228+01:002024-03-11T21:56:38.228+01:00In the early years I think that oxidative stress a...In the early years I think that oxidative stress and neuroinflammation disrupt how the brain develops. If you can "put out the fire" normal development should be more likely. <br /><br />In some countries they have NAC as a powder to dissolve in water. One brand is Fluimucil and it is given to babies. Regular NAC in gelatin capsules does taste bad, but you could add it to apple sauce or jam. You will need to see what works best.<br /><br />Regarding Ramaekers, if you get a diagnosis from him you should be able to take it to your child's doctor. Since he is a professor, your doctor will hopefully note his advice and prescribe the suggested drugs. Then you may well get the drugs for free.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.com