Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Good Luck and let us know the good news soon! ________________________________ From: " autism.fight@... " <autism.fight@...> Sent: Mon, January 24, 2011 5:40:13 PM Subject: Calling it quits... Hello.... I've decided to call it quits on the nids protocal. My son has been on nids protocal for 6 months now and no changes. He's been on a lot of meds this past 6 months and now dr wants to add more. I know meds do more damage than good. I'm understanding is that most nids patience recover off the protocal after an average 5-11 years later? And still on meds after that? I can't bear to do this whole thing. It's too much burden on my son to go through and I can't stand going through the years and just hoping that he'll recover. My husband and I need to get him better now. Hes 4 and has been doing bio medical treatment for 2 years now.... And nothing! No improvements as I was promised by doctors. That's why I'm turning to stem cell treatment. I plan to visit the panama clinic and get my son better with immediate permenate results. I wish I could have the patience some of you parents have. These past 2 years feel like an eternity of suffering for me. I breath, eat, sleep and dream " autism " . I can't be at peace until my son is better. I can't wait another 5-11 years in hope while I load my son up in meds. I will keep you posted on my trip to panama. I just got done with the application process so I still need to wait for an appointment. Most likely well be heading there in march. Wish us luck and hope all of your kiddos going through this battle recover soon.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Best of luck,we are in th battle for 5 years and it is exhausting,please let us know how you get on On Tue, Jan 25, 2011 at 1:40 AM, <autism.fight@...> wrote: > > > Hello.... I've decided to call it quits on the nids protocal. My son has > been on nids protocal for 6 months now and no changes. He's been on a lot of > meds this past 6 months and now dr wants to add more. I know meds do more > damage than good. I'm understanding is that most nids patience recover off > the protocal after an average 5-11 years later? And still on meds after > that? I can't bear to do this whole thing. It's too much burden on my son to > go through and I can't stand going through the years and just hoping that > he'll recover. > > My husband and I need to get him better now. Hes 4 and has been doing bio > medical treatment for 2 years now.... And nothing! No improvements as I was > promised by doctors. That's why I'm turning to stem cell treatment. I plan > to visit the panama clinic and get my son better with immediate permenate > results. > > I wish I could have the patience some of you parents have. These past 2 > years feel like an eternity of suffering for me. I breath, eat, sleep and > dream " autism " . I can't be at peace until my son is better. I can't wait > another 5-11 years in hope while I load my son up in meds. > > I will keep you posted on my trip to panama. I just got done with the > application process so I still need to wait for an appointment. Most likely > well be heading there in march. > > Wish us luck and hope all of your kiddos going through this battle recover > soon.... > > > -- Cotter 4 Pollerton Manor Carlow 059 9134964 087 2637921 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 My son has been on Valtrex since last May...9months with very little change or improvement. All of a sudden, he now has a rash and is sleeping better, trying to interact and talk a bit more, and is calmer. He used to be up and running at 6 am, but now I have to wake him up at 8 or he'll miss his bus to school! I am hoping all of this is a good sign that things are starting to work.... Tammy K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Hi, I don't post much, but had to answer to this. I've got news for you. There is no miracle cure. My son went to panama - He is not fixed. I discourage removing your son especially from anti - virals, and anti - fungal treatment - these kids need that, and he won't get better - most likely worse in the future if you stop. (From experience) I am not saying is the only thing you need to do, but I would think twice about quitting. I too have tried everything out there. There is no quick permanent results. Only a lucky few have those. Sheri Calling it quits... Hello.... I've decided to call it quits on the nids protocal. My son has been on nids protocal for 6 months now and no changes. He's been on a lot of meds this past 6 months and now dr wants to add more. I know meds do more damage than good. I'm understanding is that most nids patience recover off the protocal after an average 5-11 years later? And still on meds after that? I can't bear to do this whole thing. It's too much burden on my son to go through and I can't stand going through the years and just hoping that he'll recover. My husband and I need to get him better now. Hes 4 and has been doing bio medical treatment for 2 years now.... And nothing! No improvements as I was promised by doctors. That's why I'm turning to stem cell treatment. I plan to visit the panama clinic and get my son better with immediate permenate results. I wish I could have the patience some of you parents have. These past 2 years feel like an eternity of suffering for me. I breath, eat, sleep and dream " autism " . I can't be at peace until my son is better. I can't wait another 5-11 years in hope while I load my son up in meds. I will keep you posted on my trip to panama. I just got done with the application process so I still need to wait for an appointment. Most likely well be heading there in march. Wish us luck and hope all of your kiddos going through this battle recover soon.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Did you see any positive results from the stem cell treatment? ________________________________ From: " ssteff01@... " <ssteff01@...> Sent: Tue, January 25, 2011 9:46:06 AM Subject: Re: Calling it quits... Hi, I don't post much, but had to answer to this. I've got news for you. There is no miracle cure. My son went to panama - He is not fixed. I discourage removing your son especially from anti - virals, and anti - fungal treatment - these kids need that, and he won't get better - most likely worse in the future if you stop. (From experience) I am not saying is the only thing you need to do, but I would think twice about quitting. I too have tried everything out there. There is no quick permanent results. Only a lucky few have those. Sheri Calling it quits... Hello.... I've decided to call it quits on the nids protocal. My son has been on nids protocal for 6 months now and no changes. He's been on a lot of meds this past 6 months and now dr wants to add more. I know meds do more damage than good. I'm understanding is that most nids patience recover off the protocal after an average 5-11 years later? And still on meds after that? I can't bear to do this whole thing. It's too much burden on my son to go through and I can't stand going through the years and just hoping that he'll recover. My husband and I need to get him better now. Hes 4 and has been doing bio medical treatment for 2 years now.... And nothing! No improvements as I was promised by doctors. That's why I'm turning to stem cell treatment. I plan to visit the panama clinic and get my son better with immediate permenate results. I wish I could have the patience some of you parents have. These past 2 years feel like an eternity of suffering for me. I breath, eat, sleep and dream " autism " . I can't be at peace until my son is better. I can't wait another 5-11 years in hope while I load my son up in meds. I will keep you posted on my trip to panama. I just got done with the application process so I still need to wait for an appointment. Most likely well be heading there in march. Wish us luck and hope all of your kiddos going through this battle recover soon.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Hi.  I think it would be a mistake to quit after 6 months. It takes a long time to heal the immune system.  Dr. G has his book coming out in February which will explain a lot of the why's about meds. Also, along with the diet, meds, the other essential part is speech therapy, ot therapy, play therapy, etc, whatever your child needs to catch up. It takes a long time. Email me if you would like more info about therapy. Good luck.  Lynn From: ssteff01@... <ssteff01@...> Subject: Re: Calling it quits... Date: Tuesday, January 25, 2011, 9:46 AM  Hi, I don't post much, but had to answer to this. I've got news for you. There is no miracle cure. My son went to panama - He is not fixed. I discourage removing your son especially from anti - virals, and anti - fungal treatment - these kids need that, and he won't get better - most likely worse in the future if you stop. (From experience) I am not saying is the only thing you need to do, but I would think twice about quitting. I too have tried everything out there. There is no quick permanent results. Only a lucky few have those. Sheri Calling it quits... Hello.... I've decided to call it quits on the nids protocal. My son has been on nids protocal for 6 months now and no changes. He's been on a lot of meds this past 6 months and now dr wants to add more. I know meds do more damage than good. I'm understanding is that most nids patience recover off the protocal after an average 5-11 years later? And still on meds after that? I can't bear to do this whole thing. It's too much burden on my son to go through and I can't stand going through the years and just hoping that he'll recover. My husband and I need to get him better now. Hes 4 and has been doing bio medical treatment for 2 years now.... And nothing! No improvements as I was promised by doctors. That's why I'm turning to stem cell treatment. I plan to visit the panama clinic and get my son better with immediate permenate results. I wish I could have the patience some of you parents have. These past 2 years feel like an eternity of suffering for me. I breath, eat, sleep and dream " autism " . I can't be at peace until my son is better. I can't wait another 5-11 years in hope while I load my son up in meds. I will keep you posted on my trip to panama. I just got done with the application process so I still need to wait for an appointment. Most likely well be heading there in march. Wish us luck and hope all of your kiddos going through this battle recover soon.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Best of luck and I would appreciate feedback. Thanks, Jerri ---- Original Message ---- From: autism.fight@... Subject: Calling it quits... Date: Tue, 25 Jan 2011 01:40:13 -0000 >Hello.... I've decided to call it quits on the nids protocal. My son >has been on nids protocal for 6 months now and no changes. He's been >on a lot of meds this past 6 months and now dr wants to add more. I >know meds do more damage than good. I'm understanding is that most >nids patience recover off the protocal after an average 5-11 years >later? And still on meds after that? I can't bear to do this whole >thing. It's too much burden on my son to go through and I can't stand >going through the years and just hoping that he'll recover. > >My husband and I need to get him better now. Hes 4 and has been doing >bio medical treatment for 2 years now.... And nothing! No >improvements as I was promised by doctors. That's why I'm turning to >stem cell treatment. I plan to visit the panama clinic and get my son >better with immediate permenate results. > >I wish I could have the patience some of you parents have. These past >2 years feel like an eternity of suffering for me. I breath, eat, >sleep and dream " autism " . I can't be at peace until my son is better. >I can't wait another 5-11 years in hope while I load my son up in >meds. > >I will keep you posted on my trip to panama. I just got done with the >application process so I still need to wait for an appointment. Most >likely well be heading there in march. > >Wish us luck and hope all of your kiddos going through this battle >recover soon.... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 > > > From: ssteff01@... <ssteff01@...> > Subject: Re: Calling it quits... > > Date: Tuesday, January 25, 2011, 9:46 AM > > >  > > > > > Hi, I don't post much, but had to answer to this. > I've got news for you. There is no miracle cure. My son went to panama - He is not fixed. I discourage removing your son especially from anti - virals, and anti - fungal treatment - these kids need that, and he won't get better - most likely worse in the future if you stop. (From experience) > > I am not saying is the only thing you need to do, but I would think twice about quitting. > > I too have tried everything out there. There is no quick permanent results. Only a lucky few have those. > > Sheri > > Calling it quits... > > Hello.... I've decided to call it quits on the nids protocal. My son has been on nids protocal for 6 months now and no changes. He's been on a lot of meds this past 6 months and now dr wants to add more. I know meds do more damage than good. I'm understanding is that most nids patience recover off the protocal after an average 5-11 years later? And still on meds after that? I can't bear to do this whole thing. It's too much burden on my son to go through and I can't stand going through the years and just hoping that he'll recover. > > My husband and I need to get him better now. Hes 4 and has been doing bio medical treatment for 2 years now.... And nothing! No improvements as I was promised by doctors. That's why I'm turning to stem cell treatment. I plan to visit the panama clinic and get my son better with immediate permenate results. > > I wish I could have the patience some of you parents have. These past 2 years feel like an eternity of suffering for me. I breath, eat, sleep and dream " autism " . I can't be at peace until my son is better. I can't wait another 5-11 years in hope while I load my son up in meds. > > I will keep you posted on my trip to panama. I just got done with the application process so I still need to wait for an appointment. Most likely well be heading there in march. > > Wish us luck and hope all of your kiddos going through this battle recover soon.... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Costa Rica wasn't worth it. > > > > > > From: ssteff01@ <ssteff01@> > > Subject: Re: Calling it quits... > > > > Date: Tuesday, January 25, 2011, 9:46 AM > > > > > >  > > > > > > > > > > Hi, I don't post much, but had to answer to this. > > I've got news for you. There is no miracle cure. My son went to panama - He is not fixed. I discourage removing your son especially from anti - virals, and anti - fungal treatment - these kids need that, and he won't get better - most likely worse in the future if you stop. (From experience) > > > > I am not saying is the only thing you need to do, but I would think twice about quitting. > > > > I too have tried everything out there. There is no quick permanent results. Only a lucky few have those. > > > > Sheri > > > > Calling it quits... > > > > Hello.... I've decided to call it quits on the nids protocal. My son has been on nids protocal for 6 months now and no changes. He's been on a lot of meds this past 6 months and now dr wants to add more. I know meds do more damage than good. I'm understanding is that most nids patience recover off the protocal after an average 5-11 years later? And still on meds after that? I can't bear to do this whole thing. It's too much burden on my son to go through and I can't stand going through the years and just hoping that he'll recover. > > > > My husband and I need to get him better now. Hes 4 and has been doing bio medical treatment for 2 years now.... And nothing! No improvements as I was promised by doctors. That's why I'm turning to stem cell treatment. I plan to visit the panama clinic and get my son better with immediate permenate results. > > > > I wish I could have the patience some of you parents have. These past 2 years feel like an eternity of suffering for me. I breath, eat, sleep and dream " autism " . I can't be at peace until my son is better. I can't wait another 5-11 years in hope while I load my son up in meds. > > > > I will keep you posted on my trip to panama. I just got done with the application process so I still need to wait for an appointment. Most likely well be heading there in march. > > > > Wish us luck and hope all of your kiddos going through this battle recover soon.... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Hello all! I hope this finds you well. I've received a lot of feedback in regards to my last post. I had my application in process with the Stem Cell Institute in Panama but decided to put a hold for now... Most of the feedback i received was from parents that explained that calling it quits after 6 months is too early. They all recommend giving it at least another 1-2 years. It has only been 6 months and I guess it is too soon to see any improvements. It took my son at 14 months of age to regress, so I guess itll take about the same amount of time or more for him to do better. I will be beginning Immunivor and Tenix. I've heard wonderful things about these two meds from my replied posts. I guess at times we just get so impatient with ourselves and wish we could get our kids better already. I realize its going to take some blood and sweat to get my son better. I also received many replied posts about trying other remedies on the side besides just sticking with nids. Any helpful ideas from you guys would be appreciated. Again Thank you to all the parents who replied to my post and helped me realize that I need to be more patient and ride out this protocol because it eventually will help better my son. Thanks all and keep in touch! > > > > > > > > > From: ssteff01@ <ssteff01@> > > > Subject: Re: Calling it quits... > > > > > > Date: Tuesday, January 25, 2011, 9:46 AM > > > > > > > > >  > > > > > > > > > > > > > > > Hi, I don't post much, but had to answer to this. > > > I've got news for you. There is no miracle cure. My son went to panama - He is not fixed. I discourage removing your son especially from anti - virals, and anti - fungal treatment - these kids need that, and he won't get better - most likely worse in the future if you stop. (From experience) > > > > > > I am not saying is the only thing you need to do, but I would think twice about quitting. > > > > > > I too have tried everything out there. There is no quick permanent results. Only a lucky few have those. > > > > > > Sheri > > > > > > Calling it quits... > > > > > > Hello.... I've decided to call it quits on the nids protocal. My son has been on nids protocal for 6 months now and no changes. He's been on a lot of meds this past 6 months and now dr wants to add more. I know meds do more damage than good. I'm understanding is that most nids patience recover off the protocal after an average 5-11 years later? And still on meds after that? I can't bear to do this whole thing. It's too much burden on my son to go through and I can't stand going through the years and just hoping that he'll recover. > > > > > > My husband and I need to get him better now. Hes 4 and has been doing bio medical treatment for 2 years now.... And nothing! No improvements as I was promised by doctors. That's why I'm turning to stem cell treatment. I plan to visit the panama clinic and get my son better with immediate permenate results. > > > > > > I wish I could have the patience some of you parents have. These past 2 years feel like an eternity of suffering for me. I breath, eat, sleep and dream " autism " . I can't be at peace until my son is better. I can't wait another 5-11 years in hope while I load my son up in meds. > > > > > > I will keep you posted on my trip to panama. I just got done with the application process so I still need to wait for an appointment. Most likely well be heading there in march. > > > > > > Wish us luck and hope all of your kiddos going through this battle recover soon.... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Not really... I'm getting more response from parents claiming it didn't help compared to a group of kids with slight improvements. Doctor claims that a good candidate for stem cell treatment is one with actual brain damage. Our kids aren't brain damage but instead their system is dysfunctional. A stem cell treatment wouldn't benefit our kids much. This is what I'm told from my nids doctor. On Jan 25, 2011, at 6:50 AM, Rykert <myluke06@...> wrote: > Did you see any positive results from the stem cell treatment? > > ________________________________ > From: " ssteff01@... " <ssteff01@...> > > Sent: Tue, January 25, 2011 9:46:06 AM > Subject: Re: Calling it quits... > > Hi, I don't post much, but had to answer to this. > I've got news for you. There is no miracle cure. My son went to panama - He > is not fixed. I discourage removing your son especially from anti - virals, > and anti - fungal treatment - these kids need that, and he won't get better - > most likely worse in the future if you stop. (From experience) > > I am not saying is the only thing you need to do, but I would think twice > about quitting. > > I too have tried everything out there. There is no quick permanent results. > Only a lucky few have those. > > Sheri > > Calling it quits... > > Hello.... I've decided to call it quits on the nids protocal. My son has been on > nids protocal for 6 months now and no changes. He's been on a lot of meds this > past 6 months and now dr wants to add more. I know meds do more damage than > good. I'm understanding is that most nids patience recover off the protocal > after an average 5-11 years later? And still on meds after that? I can't bear to > do this whole thing. It's too much burden on my son to go through and I can't > stand going through the years and just hoping that he'll recover. > > My husband and I need to get him better now. Hes 4 and has been doing bio > medical treatment for 2 years now.... And nothing! No improvements as I was > promised by doctors. That's why I'm turning to stem cell treatment. I plan to > visit the panama clinic and get my son better with immediate permenate results. > > I wish I could have the patience some of you parents have. These past 2 years > feel like an eternity of suffering for me. I breath, eat, sleep and dream > " autism " . I can't be at peace until my son is better. I can't wait another 5-11 > years in hope while I load my son up in meds. > > I will keep you posted on my trip to panama. I just got done with the > application process so I still need to wait for an appointment. Most likely well > be heading there in march. > > Wish us luck and hope all of your kiddos going through this battle recover > soon.... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 I know I have posted this before, but the thing that helped me was closely following my son's lab results. At first I could see all of the lab counts that were way out of whack. As he progressed through the med treatments and diet changes I saw those blood levels come into reference range. Seeing the actual results showed me he was moving in the right direction from a healthy body standpoint. > > > > > > > > > > > > > > > > > > > > > From: ssteff01@ <ssteff01@> > > > > > > > Subject: Re: Calling it quits... > > > > > > > > > > > > > > Date: Tuesday, January 25, 2011, 9:46 AM > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, I don't post much, but had to answer to this. > > > > > > > I've got news for you. There is no miracle cure. My son went to panama - He > > >is not fixed. I discourage removing your son especially from anti - virals, and > > >anti - fungal treatment - these kids need that, and he won't get better - most > > >likely worse in the future if you stop. (From experience) > > > > > > > > > > > > > > I am not saying is the only thing you need to do, but I would think > > >twice about quitting. > > > > > > > > > > > > > > I too have tried everything out there. There is no quick permanent results. > > >Only a lucky few have those. > > > > > > > > > > > > > > Sheri > > > > > > > > > > > > > > Calling it quits... > > > > > > > > > > > > > > Hello.... I've decided to call it quits on the nids protocal. My son has been > > >on nids protocal for 6 months now and no changes. He's been on a lot of meds > > >this past 6 months and now dr wants to add more. I know meds do more damage than > > >good. I'm understanding is that most nids patience recover off the protocal > > >after an average 5-11 years later? And still on meds after that? I can't bear to > > >do this whole thing. It's too much burden on my son to go through and I can't > > >stand going through the years and just hoping that he'll recover. > > > > > > > > > > > > > > > > > My husband and I need to get him better now. Hes 4 and has been doing bio > > >medical treatment for 2 years now.... And nothing! No improvements as I was > > >promised by doctors. That's why I'm turning to stem cell treatment. I plan to > > >visit the panama clinic and get my son better with immediate permenate results. > > > > > > > > > > > > > > > > > I wish I could have the patience some of you parents have. These past 2 years > > >feel like an eternity of suffering for me. I breath, eat, sleep and dream > > > " autism " . I can't be at peace until my son is better. I can't wait another 5-11 > > >years in hope while I load my son up in meds. > > > > > > > > > > > > > > > > > I will keep you posted on my trip to panama. I just got done with the > > >application process so I still need to wait for an appointment. Most likely well > > >be heading there in march. > > > > > > > > > > > > > > > > > Wish us luck and hope all of your kiddos going through this battle recover > > >soon.... > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 , Sorry to hear you are quitting. Your son's immune system has not been working for a long time and it takes time to get it better. I hope you find what you are looking for but so far there is no magic cure. I suspect there have been changes you don't see because they are subtle and not speech related. Things like changes in bowels and being a little less out of it. I hope you don't see negative changes after you stop the meds. Sometimes we don't see the good accomplished until we stop the meds. I didn't think the Valtrex was doing anything for until we moved and I forgot to get it refilled. That was when the behaviors I hadn't seen for years began and didn't go away until I refilled the prescription. Don't be afraid to start the meds again. And remember it takes a normal child three years to have appropriate speech. For our kids who are dealing with medical issues, it may take longer. Best, Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 , Glad to hear you are sticking with it a while longer. If you are on the ledge, can't take it anymore and need to be talked down, call me. If Dr G makes you crazy, call me. Or if you just need someone to talk to, call me. Been there and know how hard this is when things aren't happening fast enough. Sometimes the only way I realized things were moving in the right direction was when I wrote the teachers at the beginning of every year. I had a list I would send on the things still needed to learn. I was so busy concentrating on the things I still needed to teach him and eliminating the " weird " stuff that I sometimes didn't realize how far he had come until I started crossing things off the list each year. Best Marcia Hinds 805 497-8202 Quote Link to comment Share on other sites More sharing options...
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