tag:blogger.com,1999:blog-655962722302095847.post8765312405886959321..comments2024-03-29T10:24:53.156+01:00Comments on Epiphany: PANDAS, PANS, Penguins and AutismPeter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-655962722302095847.post-64521086162998554942024-03-22T12:54:46.238+01:002024-03-22T12:54:46.238+01:00"Hello Peter. My son is 5 years old and weigh..."Hello Peter. My son is 5 years old and weighs 21 kilos. prednisone. What should be the dose? My son never makes eye contact. He is talking but it is not clear what he is saying. There is no clear word. I suspect Pandas. I want to use prednisone for my son"<br /><br />I suggest using the dose used for an acute asthma attack, which is 1-2 mg/kg for 5 days. This is very safe. Give the drug first thing in the morning to minimize its interaction with the body's own hormones.<br /><br />When given for more than 5 days you have to gradually reduce the dose ("taper" in English).<br /><br />When treating PANS/PANDAS that has been present for a long time, it takes longer to cure it. In these cases a longer course of Prednisone will likely be needed.<br /><br />Some people without access to Prednisone have success using Ibuprofen for a couple of weeks. In some cases a more potent therapy is needed.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-30303243110046865342024-03-21T23:08:16.497+01:002024-03-21T23:08:16.497+01:00Merhaba Peter. Dozunuz nedir. Oğlum 5 yaş 21 kilo....Merhaba Peter. Dozunuz nedir. Oğlum 5 yaş 21 kilo. Hangi mg verilmeliAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-13762172331588476432023-05-15T16:05:19.826+02:002023-05-15T16:05:19.826+02:00PANS treatment would normally include anti-inflamm...PANS treatment would normally include anti-inflammatory medication. This would range from NSAIDs to steroids to more potent therapies like IVIG. Try something simple like Ibuprofen.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-25266758741325486772023-05-15T14:51:14.138+02:002023-05-15T14:51:14.138+02:00Dear Peter, SoS. DS just got cold and cough and pa...Dear Peter, SoS. DS just got cold and cough and pans pandas came back severely. We have started Azythromicine 250 mg but its not controlling anxiety. He needs 24hrs car ride. Any thoughts for reducing anxiety please. Sudhakar Vankamamidinoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-62807047123929199702023-04-20T18:55:19.564+02:002023-04-20T18:55:19.564+02:00Prednisone is taken once a day, ideally early in t...Prednisone is taken once a day, ideally early in the morning to minimize its effect on the body's own hormones.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-61063252160724691572023-04-20T18:22:46.666+02:002023-04-20T18:22:46.666+02:00Peter, did you used Prednisone morning and night o...Peter, did you used Prednisone morning and night or only once in a day. Thanks Sudhakar Sudhakar Vankamamidinoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-85317814398912614702019-11-03T11:26:38.626+01:002019-11-03T11:26:38.626+01:00It is an interesting substance. It is another subs...It is an interesting substance. It is another substance which is an existing research chemical which they will make into a hugely expensive drug.<br /><br />If you have autism and respond to the gluten free diet, you would very likely respond to larazotide acetate.<br /><br />Will most people with autism/PANDAS respond to larazotide acetate? I doubt it.<br /><br />I think for sure a number of people with autism and GI problems would benefit. For the moment you would have to buy the chemical and make your own pills.<br /><br />For those with celiac disease:-<br /><br />"Larazotide acetate 0.5 mg reduced signs and symptoms in CeD patients on a gluten-free diet better than a gluten-free diet alone,"<br /><br />Biochem/physiol Actions<br />Larazotide acetate (AT1001) is a Zonulin receptor antagonist, a tight junction modulator. Larazotide inhibition of zonulin results in reducing trafficking across epithelial cells in the intestines and reducing intestinal permeability and "leaky gut," thought to be a gateway to multiple autoimmune diseases, including celiac disease, irritable bowel syndrome (IBS), inflammatory bowel diseases (IBD, Crohn′s and ulcerative colitis), type 1 diabetes mellitus (T1DM), nonalcoholic steatohepatitis (NASH), chronic kidney disease (CKD) and several others. It has been shown to inhibit the effect of inflammatory cytokines such as tumor necrosis factor (TNF-alpha) and interleukin (IL-4), blocking their increase of intestinal epithelial permeability.<br /><br /><br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-77813328544727019892019-11-03T05:16:22.140+01:002019-11-03T05:16:22.140+01:00I am curious if you have kept up with the research...I am curious if you have kept up with the research on zonulin and larazotide acetate to regulate zonulin. I see they are in phase 3 clinical trials for celiac disease but I was curious what you thought about using it to repair the gut barrier for children with autism and PANDAS.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-33037534032713765842016-06-10T10:49:18.530+02:002016-06-10T10:49:18.530+02:00Petra, some probiotics do seem to help certain peo...Petra, some probiotics do seem to help certain people, but it is not easy to know which might help a particular person.<br />One medical reader of this blog uses biogaia-gastrus, to down regulate TH1 and upregulate IL-10.<br /> http://www.biogaia.com/product/biogaia-gastrus<br />There is another clever one from Japan called BIO-THREE<br />http://www.bio-three.com/human.php<br />The ones that increase Tregs (reulatoty T cells) and increase IL-10 may well be helpful.<br />Probiotics are unlikely to do any harm and so you might as well try different ones to see if there is benefit. The benefit may not be in reducing OCD.<br />The other thing is to look at treatments used for tics and Tourette's. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-55877778019571830512016-06-10T09:22:56.619+02:002016-06-10T09:22:56.619+02:00Hi Peter, would you trust a probiotic (VSL#3) with...Hi Peter, would you trust a probiotic (VSL#3) with streptococcus thermophilus for an Asperger's with severe OCD like behaviours?Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-82462066223155630702014-07-01T12:19:07.566+02:002014-07-01T12:19:07.566+02:00There do seem to be very many different causes/typ...There do seem to be very many different causes/types of regressive autism. I hope one day they will be given their own names and therapies. For the time being, the parent has to be the medical detective. It worked for me.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-356138634964845472014-06-30T05:21:12.295+02:002014-06-30T05:21:12.295+02:00This is incredibly interesting to me. My little b...This is incredibly interesting to me. My little boy, who is 7, is so attached to me. In fact, he is sitting here on my lap as I type this. He brought me his elephant and giraffe earlier and said, "Owies. Doctor." And, proceeded to show me where they needed their tape bandages. He is an avid swimmer. Can dive down to 10 feet deep. Can jump up and grab a pull up bar and do a flip around it. There are times when he is much "stimmier" than others. And, I'll go through what I am giving him to see if I forgot anything. And, when I say stimmy, it's a very brief jumping up and down and flapping his hands. His main form of stimming is a higher pitched tone of voice where he'll just kind of hold a high "c" note. One of his favorite things is to make me draw for him. I take a minute and type then go to drawing what he wants me to, which is RARELY the same thing. He wasn't a little baby, at least, as long as you aren't counting an 8.5 pound baby as small. And, he crawled and walked, and to me, is still physically on target with his peers. Bike riding is a little slow, but so is his big brother who is not autistic. He is in the regressive autism category, but cares very much where I am at all times.Anonymousnoreply@blogger.com