Guest guest Posted July 24, 1999 Report Share Posted July 24, 1999 I don't think you're wrong to express your opinions or things that you have been told. This has been a very long and expensive road for us, trying to find how to approach my sons illness. When I saw the show on dateline it sounded like the answer to my prayer. I even located a doctor in my state who was doing the treatments. The information I was sent sounded very promising. Then I started seaching the internet, trying to get as much information as I could. That was when the reality of what really was not known about this, set in. The more I looked the more questions I had, I finally decided that until more was known my son would not be having that treatment. Thankfully, under Dr. Goldbergs care, things are starting to look very good. A good example happened today. Today I took my son to see a movie. For the last several years, he would refuse to go in until the previews were over because he couldn't take the extra noise and fast movements. Sometimes he could not even handle the noise level of a movie and we would have to leave. Today, he was able to handle the previews with no problem. He also was able to whisper comments to me instead of being loud and having to be told constantly to talk quieter. I am truly amazed to see not only the major symptoms going away but also to see how much the sensory issues are changing. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 1999 Report Share Posted July 24, 1999 Maura & Uttiya, My son has had alot of difficulties, although not full autism. When really ill he completely shuts down on schoolwork and is unable to draw, read, etc. He has uncontrollable rages, strange behavior, he gets very sensitive to lights,noise, smells,etc. He feels sick alot, headaches, can hardly ride in the car without feeling carsick. A few years ago he started having alot of fear, panic and went into obsessive compulsive behavior We are doing the type of treatments discussed on Dr. Goldberg's website, addressing different pieces of this to calm his immune system down. Although not the only issue, the viral part of this is a major factor contributing to the symptoms my son has, especially the sensory issues. We are addressing the different pieces of this at this point and hopefully in the future we will have the immune modulators, to make this alot easier. As far as access to Dr. G, Fortunately, I'm only a few hours away from him. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 1999 Report Share Posted July 26, 1999 Margie, We all want to help our children be the best they can be. I think the whole point was to stress that there are questions about secretin that a parent should be aware of. You made your decision based on knowing both the pro's and con's which is how a decision should be made. I just felt that the information I received really didn't give much information on the possible risks only on the possible gains. How does that saying go? The only choice is an informed choice. I'm really glad that things are going well for your son. It really amazes me that my son can still be positive and happy with all that he has been through in the past. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 1999 Report Share Posted July 26, 1999 Cheryl, thanks for your response. You are so lucky that your son is happy. I think one of the things that drives me to research all the interventions out there -- and try most of them -- is that has always been so unhappy. He seems to be feeling much better overall since we began the Secretin but still has times when he seems just so miserable. the difference with Secretin is that now we can talk to him and help him shift gears; he has become consolable for the first time in his life. I agree that the only choice any of us can make is an informed choice. And I have learned over the years to run from any interventions that sound too good to be true or seem to exclude other interventions. The only thing any of us can really do is try the things that we feel in our hearts might help our kids. Good luck to you. Margie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 We just had our first shot 3 weeks ago and another one is planned for next week. the only real sign we saw was he lost his constipation for about 2 weeks. But hey, that's better than nothing. Mel In a message dated 1/3/04 12:12:51 AM, writes: << From: BnCALLIERA@... Subject: secretin Looking for general info about secretin. in what areas does it supposedly help? Is the synthetic secretin as good as non synthetic. any opinions are welcome. kelly >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 Hi there- We are looking for anyone who has experience with Secretin via an IV with your child. Our DAN docotr has recommended this for our little boy and we really need to find out more before we proceed. Any information or advice would be extremely helpful! Thank you! Quote Link to comment Share on other sites More sharing options...
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