Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 I don't know what VSL#3 is. We are going to start on colostrum - with the casein removed - soon. So I can't help with that yet. We may be taking folopro at one point. xo > > Is anyone using vsl#3, Folapro, phoscol, colostrum, evening primrose oil, or Bio Body Oil? Any input would be great. These are all things I have not tried yet. The Spectrum Supplements website is a great one! It has almost everything. Also, is everyone out there doing a minimum of 150 billion org./day with probioitcs? I havn't. Maybe that's one reason why we are still having gut issues. He definitely is a gut kid. We did metrodiazonole and diflucan almost 2 years ago for his diarrhea. It helped tremendously. Stool was still not quite normal until we started SCD. I didn't start it right away because he wouldn't eat anything. So, I did gf/cf. If I could have done SCD right away, I think he would be alot better today than what he is. He is now doing oral DMSA, which I question only because I wonder if it is to much for his gi. I am thinking about trying TD DMPS. We have a DAN! Dr. and we like her alot, but I don't > think we are doing enough. > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Don't most probiotics have strep and casein strains of bacteria in them? My son is not PANDAS. Should I still be concerned about these strains? Amy To: mb12 valtrex Sent: Thursday, November 20, 2008 12:29:26 PMSubject: Re: VSL#3 probiotic yes if you are chelating you want a good strong base of probotics to keep from yeast flares and to keep the gut in shape VSL3 has casein in it and I believe strep as well Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace. com/christelkinghttp://foggyrock. com/MyPage/ recoveringwisheshttp://www.facebook .com/profile. php?id=677063169 VSL#3 probiotic Is anyone using vsl#3, Folapro, phoscol, colostrum, evening primrose oil, or Bio Body Oil? Any input would be great. These are all things I have not tried yet. The Spectrum Supplements website is a great one! It has almost everything. Also, is everyone out there doing a minimum of 150 billion org./day with probioitcs? I havn't. Maybe that's one reason why we are still having gut issues. He definitely is a gut kid. We did metrodiazonole and diflucan almost 2 years ago for his diarrhea. It helped tremendously. Stool was still not quite normal until we started SCD. I didn't start it right away because he wouldn't eat anything. So, I did gf/cf. If I could have done SCD right away, I think he would be alot better today than what he is. He is now doing oral DMSA, which I question only because I wonder if it is to much for his gi. I am thinking about trying TD DMPS. We have a DAN! Dr. and we like her alot, but I don't think we are doing enough. Amy No virus found in this incoming message.Checked by AVG - http://www.avg. com Version: 8.0.175 / Virus Database: 270.9.7/1798 - Release Date: 11/18/2008 8:59 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Hi Amy, The most common varieties of probiotics are Acidophilus/Bifidus. This is made with and without dairy, depending on the brand (some have casein, some do not). As more and more strains of bacteria are added to the mix, you will begin to see healthy (non-pathogenic) strains of streptococcus (but not always - there are several full-bodied probiotics that omit strep). Additionally, just like yogurt starter cultures, probiotics are available in non-dairy (vegan). > > Don't most probiotics have strep and casein strains of bacteria in them? My son is not PANDAS. Should I still be concerned about these strains? > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 I missed part of your question... If you are following a casein-free diet, you may want to look for non-dairy (or vegan) sources of probiotics, but the decision is a personal one. Some families use probiotics derived from dairy sources without incident, others need to completely avoid all sources of casein, including trace amounts in probiotics. Go with your Mommy gut. When it comes to non-pathogenic strains of streptococcus, this is used to restore the healthy, naturally existing streptococcus flora required for a healthy intestinal tract. It's not Group A strep that causes infection. Many people fear the word " strep " because of it's negative associations, others families report reactions in conjunction with products that contain many bacterium including non-pathogenic strep. Again, you will hear some parents say it's safe, others are convinced it's not safe for PANDAS in particular. Go with your Mommy gut again... And finally, enterococcus faecalis is controversial. Some families love it because it's a strong strain and helps crowd out bad bacteria, others find that this bacteria can overpopulate and become problematic on its own. Antibiotics are then used to treat the overgrowth. I personally don't think this risk is worth it... and there are many other choices that don't carry this associated risk. HTH! P.S. This article is not about probiotics specifically, but discusses our natural healthy flora and why bacteria is important: http://tinyurl.com/5l93ne > > Don't most probiotics have strep and casein strains of bacteria in them? My son is not PANDAS. Should I still be concerned about these strains? > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Creon 10/20, Pancreacarb, and Sucraid....--- how do you go about obtaining those?? when I last looked into Sucraid (sounded very promising for us) it was rx only, has something changed? (we don't have anyone to prescribe)nx> >> > Is anyone using vsl#3, Folapro, phoscol, colostrum, evening > primrose oil, or Bio Body Oil? Any input would be great. These are > all things I have not tried yet. The Spectrum Supplements website is > a great one! It has almost everything. Also, is everyone out there > doing a minimum of 150 billion org./day with probioitcs? I havn't. > Maybe that's one reason why we are still having gut issues. He > definitely is a gut kid. We did metrodiazonole and diflucan almost 2 > years ago for his diarrhea. It helped tremendously. Stool was still > not quite normal until we started SCD. I didn't start it right away > because he wouldn't eat anything. So, I did gf/cf. If I could have > done SCD right away, I think he would be alot better today than what > he is. He is now doing oral DMSA, which I question only because I > wonder if it is to much for his gi. I am thinking about trying TD > DMPS. We have a DAN! Dr. and we like her alot, but I don't> > think we are doing enough. > > > > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 All are prescription and all are heavy duty. My son has sucrase/isomaltase deficiency dx by a Buie endoscopy and while he failed to prescribe it, I found another doctor who would. Problem is that it costs 5k a month!!!! Can you believe that??? I all but gave up hope but then I kept asking folks at the company, how do poor folks get this (as many autistic parents indeed qualify as " financially challenged " )? Where do they go??? Again, poor folks are the " professionals " who know how to get a lot for a little. So what the real poor folks have in many of these companies is a program where they get to pay a copay and the company handles the rest with their insurance, that is, if they have insurance. When it was all said and done, we got Sucraid for 75 dollars a month. A far cry from the 5k they straight-faced quoted us intially. > > > > > > Is anyone using vsl#3, Folapro, phoscol, colostrum, evening > > primrose oil, or Bio Body Oil? Any input would be great. These > are > > all things I have not tried yet. The Spectrum Supplements website > is > > a great one! It has almost everything. Also, is everyone out there > > doing a minimum of 150 billion org./day with probioitcs? I > havn't. > > Maybe that's one reason why we are still having gut issues. He > > definitely is a gut kid. We did metrodiazonole and diflucan almost > 2 > > years ago for his diarrhea. It helped tremendously. Stool was > still > > not quite normal until we started SCD. I didn't start it right > away > > because he wouldn't eat anything. So, I did gf/cf. If I could > have > > done SCD right away, I think he would be alot better today than what > > he is. He is now doing oral DMSA, which I question only because > I > > wonder if it is to much for his gi. I am thinking about trying > TD > > DMPS. We have a DAN! Dr. and we like her alot, but I don't > > > think we are doing enough. > > > > > > Amy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 All are prescription and all are heavy duty. My son has sucrase/isomaltase deficiency dx by a Buie endoscopy and while he failed to prescribe it, I found another doctor who would. Problem is that it costs 5k a month!!!! Can you believe that??? I all but gave up hope but then I kept asking folks at the company, how do poor folks get this (as many autistic parents indeed qualify as " financially challenged " )? Where do they go??? Again, poor folks are the " professionals " who know how to get a lot for a little. So what the real poor folks have in many of these companies is a program where they get to pay a copay and the company handles the rest with their insurance, that is, if they have insurance. When it was all said and done, we got Sucraid for 75 dollars a month. A far cry from the 5k they straight-faced quoted us intially. > > > > > > Is anyone using vsl#3, Folapro, phoscol, colostrum, evening > > primrose oil, or Bio Body Oil? Any input would be great. These > are > > all things I have not tried yet. The Spectrum Supplements website > is > > a great one! It has almost everything. Also, is everyone out there > > doing a minimum of 150 billion org./day with probioitcs? I > havn't. > > Maybe that's one reason why we are still having gut issues. He > > definitely is a gut kid. We did metrodiazonole and diflucan almost > 2 > > years ago for his diarrhea. It helped tremendously. Stool was > still > > not quite normal until we started SCD. I didn't start it right > away > > because he wouldn't eat anything. So, I did gf/cf. If I could > have > > done SCD right away, I think he would be alot better today than what > > he is. He is now doing oral DMSA, which I question only because > I > > wonder if it is to much for his gi. I am thinking about trying > TD > > DMPS. We have a DAN! Dr. and we like her alot, but I don't > > > think we are doing enough. > > > > > > Amy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 If your child is off milk is the lactic acid bacteria bad? VSL #3: Ingredients: Lactic acid bacteria, microcrystalline cellulose, stearic acid, silicon dioxide. > > > > Is anyone using vsl#3, Folapro, phoscol, colostrum, evening > primrose oil, or Bio Body Oil? Any input would be great. These are > all things I have not tried yet. The Spectrum Supplements website is > a great one! It has almost everything. Also, is everyone out there > doing a minimum of 150 billion org./day with probioitcs? I havn't. > Maybe that's one reason why we are still having gut issues. He > definitely is a gut kid. We did metrodiazonole and diflucan almost 2 > years ago for his diarrhea. It helped tremendously. Stool was still > not quite normal until we started SCD. I didn't start it right away > because he wouldn't eat anything. So, I did gf/cf. If I could have > done SCD right away, I think he would be alot better today than what > he is. He is now doing oral DMSA, which I question only because I > wonder if it is to much for his gi. I am thinking about trying TD > DMPS. We have a DAN! Dr. and we like her alot, but I don't > > think we are doing enough. > > > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 No problem Amy. One more thing you might want to keep in mind. You mentioned folopro which is folinic acid or 5mthf. Here again, the same principle applies as above except there are a couple exceptions. Most 5mthf pills contain anywhere from 800mcg (Folapro) to 1000mcg (Thorne) which are .8 mg and 1mg respectively. For a significant number of autistic parents these levels of supplement are not even in the ball park. Here again, the professional clients in the folinic acid business are those folks with Cerebral Folate Deficiency. Most of these children are being supplemented 10, 20, and even 40 mg a day of Leucovorin. Before I knew my son's CSF folate numbers where low normal, I was giving my son 1mg of Thorne and thinking that was enough. Once I got the test results back and went to the forums and pubmed studies, I quickly found that standard treatment for raising the folate numbers was 10 to 15 times the supplement amount that I had been giving. Literally, the second day of supplementing my son with three 5 mg tablets of Leucovorin, we began to see increases in speech and articulation. One huge caveat about this though comes from the work of Amy Yasko. There are some folks who need larger doses of 5mtfh but because of CBS upregulations (see ammonia on yasko forums) and other methylation cycle defects, they are unable to tolerate them without first addressing some of the underlying genetic predispositions to elevated ammonia production. All the best to you. > > > > Is anyone using vsl#3, Folapro, phoscol, colostrum, evening > primrose oil, or Bio Body Oil? Any input would be great. These are > all things I have not tried yet. The Spectrum Supplements website is > a great one! It has almost everything. Also, is everyone out there > doing a minimum of 150 billion org./day with probioitcs? I havn't. > Maybe that's one reason why we are still having gut issues. He > definitely is a gut kid. We did metrodiazonole and diflucan almost 2 > years ago for his diarrhea. It helped tremendously. Stool was still > not quite normal until we started SCD. I didn't start it right away > because he wouldn't eat anything. So, I did gf/cf. If I could have > done SCD right away, I think he would be alot better today than what > he is. He is now doing oral DMSA, which I question only because I > wonder if it is to much for his gi. I am thinking about trying TD > DMPS. We have a DAN! Dr. and we like her alot, but I don't > > think we are doing enough. > > > > Amy > > > Quote Link to comment Share on other sites More sharing options...
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