Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Hi, I was wondering if any of you have used a product called Secrenase on your child? I just read about it on http://www.secrenase.citymax.com/page/page/1019203.htm and it's a nasal spray that, I believe, delivers secretin. It costs $80.00 for about a five-week supply. They have a really good article on Autism and Bacteria, which is how I was originally led to the site. Would appreciate hearing from any parents who have experience with it. Thanks! Mom to Noah Partha, 29 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Be careful here. First of all, secretin is a hormone that exerts its actions primarily on the gut. And although receptors for secretin appear to show up in the brain, no one has determined what function secretin has in the brain. Secretin delivered nasally would be subject to conditions in the nose and lung not favorable for stability of a peptide hormone. Plus it would have to be absorbed systemically to reach the brain or any other site of action. Also, there are a number of things on the website that raise red flags to me. First, their email address is an AOL mailbox, rather strange that they don't have their own domain. The message board is a little strange, most of the messages seem to be of about the same lenght, and seem to have the same " tone " to them. People's writings are like a signature, they are distinct. Those messages seem too similar to me. I'm not saying not to try it, but please keep investigating. > Hi, I was wondering if any of you have used a product called Secrenase > on your child? I just read about it on > http://www.secrenase.citymax.com/page/page/1019203.htm and it's a > nasal spray that, I believe, delivers secretin. It costs $80.00 for > about a five-week supply. They have a really good article on Autism > and Bacteria, which is how I was originally led to the site. > > Would appreciate hearing from any parents who have experience with it. > Thanks! > > > Mom to Noah Partha, 29 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 I agree with Devin, be careful. The chap behind this sed to pratise in the UK (GP) but has now 'left the country'. There was bad press about him using substandard vaccine in his single MMR clinics (expenisve) and this clain of some 40,000 usingf the Secrenase - I have been on these lists for nearly 5 years, I've yet to find anybody thats used it - how is that possible if the only way to find out about it is on the net? And I have asked around several times On the flip side, I met half a dozen very happy mums whose kids were receiving Secrelux - the injection synthetic secretin - by the same guy, who used to fly around the UK in a small plane and do clinics in peoples back rooms. 4 of these mums reported sprontaneous and retained speech (monthly inj) within hours of a treatment. I met them 4 years ago at a conference. It appears he's in Oz permanently now since the bad press on the clinic Mandi in UK > > First of all, secretin is a hormone that exerts its actions > primarily on the gut. And although receptors for secretin appear to > show up in the brain, no one has determined what function secretin > has in the brain. > > Secretin delivered nasally would be subject to conditions in the > nose and lung not favorable for stability of a peptide hormone. Plus > it would have to be absorbed systemically to reach the brain or any > other site of action. > > Also, there are a number of things on the website that raise red > flags to me. First, their email address is an AOL mailbox, rather > strange that they don't have their own domain. The message board is > a little strange, most of the messages seem to be of about the same > lenght, and seem to have the same " tone " to them. People's writings > are like a signature, they are distinct. Those messages seem too > similar to me. > I'm not saying not to try it, but please keep investigating. > > > >Hi, I was wondering if any of you have used a product called > Secrenase > >on your child? I just read about it on > >http://www.secrenase.citymax.com/page/page/1019203.htm and it's a > >nasal spray that, I believe, delivers secretin. It costs $80.00 for > >about a five-week supply. They have a really good article on Autism > >and Bacteria, which is how I was originally led to the site. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Thanks, Devin! I've searched the net and can't find much info on it. It probably is too good to be true - and if it is a scam, then shame on them! As a parent, it's so easy to get led into something that you think will help your child. It's hard to weed out the good from the bad. You brought up some very interesting points in your email, and I really appreciate it. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 , Keep in mind that there haven't been successful studies on secretin anyway after years of trying. Study after study has failed to find secretin of any value over placebo. Even Repligen's last trial failed to show it worked over placebo. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 i sent off for their " info packet " and that was all i needed to do to see that it was not a good thing. i am all for secretin but not getting it in a nasal spray and DEFINATELY not through them. their packet was telling the story of parker beck that most people in the autism community are familiar with. well, it was HIS story and they changed the name to Tommy Beck. i have read about parker beck because my son was in the phase three trial study for repligen's secretin. their packet is not even a packet. no letterhead, just some papers stapled together. their address is a po box number in austrailia and a po box in united kingdom but the bottom of the paper states that secrenase is a division of secrenase LLC Delaware USA. by the way, there are several mispelled words all over the packet. too many to just be a mistake, its like the person is not educated or acquainted with american dialect. there were just many bad things that made me think that it was a hoax. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 thats not completely true. my son was in the phase three trial study of secretin. with the " part " of the study they unblinded, they did fail to see " significant " change from the placebo kiddos. on the other hand, might i add that there were two groups in this study. one with children with gastrointestinal issues diagnosed with autism like yeast, bacteria, imtolerance to gluten, casein and other food allergies, chronic diarrea, constipation, reflux etc.. and then there was a group of children with no apparent gastro problems. The group unblinded early for the fda was the group with no gastrointestinal problems. the other group, which my son is in, hasnt been unblinded yet. however, eventhough the results of whether my son got the placebo or not arent in, i know he got the secretin. we went from horrible problems (behavior and gastrointestinal) to minimal problems with no other interventions while on the study. since stopping the secretin because of the hold on the study(which is not over contrary to what people believe based on initial results) my sons gastro problems returned after about 6 weeks of no secretin. while they have improved somewhat since then with enzymes and the start of chelation, we are not where we were while on secretin. just my two cents. if we believed all studies were accurate and gave us a definate yes or no answer on things, then the mmr and thirmosal theories would be out the window. or any " vaccine related " theory for that matter. and if that happened, it would be telling people like me (who had a normal child who received the mmr and within 15 minutes was rushed to childrens hospital and has never been the same since) that what i saw happen to my PERFECT child right after the vaccine was a figment of my imagination. im not saying all treatments work for all kids and that all our children got on the spectrum the same way, i believe every case is so completely individual, but if i based all opinions on studies, my son could have had a booster mmr at 4 and i might not have him. furthermore, without secretin i wouldnt have seen that there is something more in him that he can return to. thanks for listening to my opinion. ps......i dont know what i would do without houston enzymes. thank goodness for houstons. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 I have used transdermal secretin (obtained by Rx) from Hopewell Pharmacy and secrenase. They seem to work the same. Secrenase? > Hi, I was wondering if any of you have used a product called Secrenase > on your child? I just read about it on > http://www.secrenase.citymax.com/page/page/1019203.htm and it's a > nasal spray that, I believe, delivers secretin. It costs $80.00 for > about a five-week supply. They have a really good article on Autism > and Bacteria, which is how I was originally led to the site. > > Would appreciate hearing from any parents who have experience with it. > Thanks! > > > Mom to Noah Partha, 29 months > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Dr Pugh is a qualified Doctor, he practised here in the UK for many years as an NHS GP. He left under a bit of a cloud - there was an on-going investigation into his single MMR clinic. However, bear in mind British gvernment hates that anybody is offering single doses of MMR Mandi in UK > I attended a seminar approximately 18 months ago, at which a Dr > Pugh spoke on nasal secretin. I believe he said he was going to be > based on the Gold Coast (Queensland). There was one woman in the > audience who had used it on her son, with good results. If you wanted > to check the bona fides of this doctor/company, you may wish to > contact Autism Behavioural Intervention Queensland which organised > this seminar. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Hi , I attended a seminar approximately 18 months ago, at which a Dr Pugh spoke on nasal secretin. I believe he said he was going to be based on the Gold Coast (Queensland). There was one woman in the audience who had used it on her son, with good results. If you wanted to check the bona fides of this doctor/company, you may wish to contact Autism Behavioural Intervention Queensland which organised this seminar. http://www.abiq.org/ , Australia. > Hi, I was wondering if any of you have used a product called Secrenase > on your child? I just read about it on > http://www.secrenase.citymax.com/page/page/1019203.htm and it's a > nasal spray that, I believe, delivers secretin. It costs $80.00 for > about a five-week supply. They have a really good article on Autism > and Bacteria, which is how I was originally led to the site. > > Would appreciate hearing from any parents who have experience with it. > Thanks! > > > Mom to Noah Partha, 29 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Thanks , Is this considered a pretty safe thing I can just try and see if it helps? Marie > > Does anyone have any thoughts on this? I was thinking about asking > our DAN if we could try a transdermal but if anyone was getting good > results thought I might order this as a try and see. Anyone know how > much it costs? > Thanks, > Marie > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.