Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 > Hi Anyone have any experience with this drug on their autistic child? Any positives/negatives while on it? Thanks. I am curious too if people wish to discuss this publicly. I have discussed results with a lot of adults (it is faddish in MS treatment) and there are a lot more negatives than are generally admitted to by the doctors. Andy . . . . . .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 I cut & pasted this for myself from a recent post- I think from Dr. McCandless- from the LDN list: Dr. Marvin Boris and his Physician-Assistant Allan Goldblatt now have 350 ASD kids in a study with very good lab testing before and during the study with the majority of kids showing positive results in terms of cognition, calmness, verbal ability, and socialization, with decrease in diarrhea and aggression. The most exciting news to me is that they have shown remyelination on testing starting to appear after about 8 months for some of the children on this medicine. (I have these kind of studies on very few of the kids on LDN, but hope to start getting them). Ages are from 2-1/2 up to teen-agers. After stopping at the 8 month point they have not yet noted regression in the kids who stopped, though I don't believe too many have reached that point yet. They have been adding kids all along, rather than starting them all at once, so results are not all in yet. As this is a preliminary study, they do not have controls in any formal system - (not blinded); that will come eventually. The good results are happening with adults, too. Side effects of Actos: Hyperactivity Agitation 22/350 Periorbital Edema 9/350 Weight Gain 34/350, with 10% increase in height and weight Abnormal CBC's, Liver Function 0/350 Hypoglycemia, Hyperinsulinemia 0/350 The disadvantages of Actos are the relatively few but significant side effects, the fact that blood tests need to precede and accompany its use, and it is an expensive medication which is difficult for those who do not have good insurance. A group of my patients found a place on the internet where we can get it for $100 a month, but I had to send them a great deal of information to get them to be willing to give it to the children - a prescription is required of course, even on internet pharmacies. Anyway, these two new " kids on the block " for autism are exciting and need to be studied for long term effects. My inclination is to start LDN first due to its simplicity and low-cost and also that it may show some behavioral side effects quite soon and doses can be moderated to stabilize the child before adding Actos. Some are responding so well that they do not need to add the Actos, and of course many of the kids in Dr. B/AG's study have only been on Actos. They are starting to add this more now after hearing my presentations at the conference and think tank. The obvious effects are not so prevalent in the Actos, but the metabolic side effects must be tested for, as it is designed to affect the carbohydrate metabolism and the fat-cells, and this definitely needs to be checked for long-term effects. Our hope is that both meds will help the immune system normalize and operate more beneficially for our kids. Though all of Drs. B & AG's as well as my patients are encouraged to stay on a good dietary restriction regime, diet may be more of a factor with LDN, as a few kids have shown a strong response to the blockage function with what looks like (opioid or caseo-gluteomorphine) withdrawal symptoms. This has led some parents to resume their dietary restriction so as to get better results with the LDN and with success in some and not in others - these few have had to forego the use of LDN. As leaky guts heal, this may not be a factor, and some kids who have left the diet are having good results with the medication. Message: 15 Date: Mon, 07 Nov 2005 14:17:47 -0000 From: " rlyrio " <rlyrio@...> Subject: ACTOS - PPAR Has anyone had any experience with ACTOS-PPAR ? I heard it was mentioned during the last DAN! and was wondering if anyone has more information on it. Tks a lot -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.362 / Virus Database: 267.12.8/162 - Release Date: 11/5/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 In a message dated 16/11/2005 02:49:54 GMT Standard Time, tryfonas@... writes: Has anyone heard of Actos? >>>>yes if you go back a day or two I posted some info from Dr McCandless on it. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 I think i may have deleted it my mistake. could it be possible for someone to resend it to me about Actos Kind regards Chriso ---- Original Message ----- From: Mum231ASD@... TreatingAutism-Biomedical Sent: Tuesday, November 15, 2005 11:48 PM Subject: Re: Actos In a message dated 16/11/2005 02:49:54 GMT Standard Time, tryfonas@... writes: Has anyone heard of Actos? >>>>yes if you go back a day or two I posted some info from Dr McCandless on it. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 In a message dated 13/02/2006 18:30:35 GMT Standard Time, peta_catherine@... writes: We use 1/4 tablet every day and I don't know what exactly it has done but no real negatives. He is on rather a lot so it is difficult to know - but language and understaning is steadily improving. His ABA teacher said today can you write number 2 and Charlie said "no but I can do number 1". He couldn't answer a question like that a month ago and he was non verbal 11/2 years ago ( he is 41/2). >>Awesome He has come a LOOOOONG way in such a short time - congratulations! Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 We started Actos several months ago. We started with 15 mg once per day and then increased to 30 mg after one month. During the second month, we saw great improvements in language. Unfortunately, my son developed priapism (Sp?) a vasodilatation of the penis. We had to drop the dose back to 15 mg. Drs Boris, Goldblatt and Ellis report that they have about 1000 kids on Acots right now. They recommend insulin and glucose tests every three months while on it, though they haven't seen any problems with blood sugar so far. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 May I ask what " priapism " of the penis is? My son is on Actos and has 2 urologic related surgeries in the past. Who might be a candidate for this condition? Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Hi, all. Regarding Actos, my ds has been on it about three months and I can tell he is calmer and more able to listen to direction. I don't like pharma solutions, but I really have no choice he has so much neuro-inflamation. ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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