my son

[Guest guest]

To everyone below(and not who has boy with ASD or autism, you're reading from someone who is dx'ed with AS(adult man now) and yes, you are all correct. I have faced those situations already as adult. It is so frusterating when combination of lack of autism education to the public and for it to be visually hidden to them. Symptoms of ASD and autism to neurotypicals are judged as inappropriate, violent, disruptive, aggressive, etc., etc. That's when NTs think ASDs are doing it intentionally, and arrest them.

I'm in the middle of constant reviews by probation officer and court judge when I'll be allowed to use public services (I need) with NTs. It's been over twice as long as initially suspended for to go back. If wondering, that service is public transportation(bus) as I can't drive with seizures.(double whamie)

Some advice from personal experience - Beg(if not enforce) teachers to give your child more social time with classmates. If classmates act scared, not understanding why child has these different personalities, ask teacher to explain to them. Then classmates may accept(if not already) how your child is different and be more open to socialize.

It abuses any child not to gain and practice social skills through all 12 years in grade school. Otherwise problems and bigger penalties will erupt in adulthood. That's my advice from personal experiences with AS.(and seizures) Tom

From: Chambers <missjen0124@...>Subject: Re: ( ) My son Date: Tuesday, October 13, 2009, 9:58 AM

It absolutely terrifies me to think of his rages as a 12, 16, 21 year old! what then? People don't care about a diagnosis if he's just spazzing for "no reason" or so they think at least. When you're an adult and start throwing things in public, I'm pretty sure you might get arrested. My neighbor is a paranoid schizofrenic( sp?) and he is a wonderful man on his meds..off his meds, he ends up scaring people and gets locked up all the time! I pray that my son won't ever go through that.

From: Jen Marks <barefootmamma@ sbcglobal. net> Sent: Mon, October 12, 2009 8:30:21 PMSubject: Re: ( ) My son

Oh boy, do I know exactly what you're saying. I've worried about not being able to handle my son in the future-- as he gets bigger and stronger. I'm just putting a whole lot of hope into what we have started now. (((hugs)))

Jen

From: Chambers <missjen0124> Sent: Sunday, October 11, 2009 12:33:28 PMSubject: Re: ( ) My son

I'm pretty much in the same boat as you. Just today my son was mad that he didn't earn a small prize at Walmart, so he began throwing things off the shelves. I didn't want to scream or yell, so I thought he might stop if I didn't show him attention for it. Boy was I wrong! I asked him to put the things back like he found it, and he began to throw more. I'm not sure what to do either. He's getting worse and worse everyday, where I'm not even sure that I can handle him anymore, and he's only 7. What's going to happen when he's doing this at 12 and 13, or even as an adult. I'm definitely sinking more and more into a depression over this, because I have no one who knows what I'm going through. People say "oh, he's not that bad" but I know they're just being nice. What do you do when you're just so tired, and feel like you have nothing left to give?

From: "barefootmamma@ sbcglobal. net" <barefootmamma@ sbcglobal. net> Sent: Sun, October 11, 2009 11:19:36 AMSubject: ( ) My son

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

[Guest guest]

What homeopathic remedy did you/do you use instead of Prozac, if I might ask?

Robin

From: barefootmamma@ sbcglobal. net <barefootmamma@ sbcglobal. net>Subject: ( ) My son Date: Sunday, October 11, 2009, 9:19 AM

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

[Guest guest]

Robin,I am using Veratrum album.  But it is a remedy that is specific to my son's symptoms.  Two people with the exact same diagnosis would likely need two different remedies.  I found it myself (I'm a homeopath), but it's very difficult to find remedies for ones own family, regardless of knowledge and experience.  It was almost a fluke how I found it.  JenFrom: and/or Robin Lemke

<jrisjs@...> Sent: Tuesday, October 13, 2009 7:59:16 PMSubject: Re: ( ) My son

 

What homeopathic remedy did you/do you use instead of Prozac, if I might ask?

Robin

From: barefootmamma@ sbcglobal. net <barefootmamma@ sbcglobal. net>Subject: ( ) My son Date: Sunday, October 11, 2009, 9:19 AM

 

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

[Guest guest]

Thanks, Tom. Wonderful words.....

Robin

From: Chambers <missjen0124>Subject: Re: ( ) My son Date: Tuesday, October 13, 2009, 9:58 AM

It absolutely terrifies me to think of his rages as a 12, 16, 21 year old! what then? People don't care about a diagnosis if he's just spazzing for "no reason" or so they think at least. When you're an adult and start throwing things in public, I'm pretty sure you might get arrested. My neighbor is a paranoid schizofrenic( sp?) and he is a wonderful man on his meds..off his meds, he ends up scaring people and gets locked up all the time! I pray that my son won't ever go through that.

From: Jen Marks <barefootmamma@ sbcglobal. net> Sent: Mon, October 12, 2009 8:30:21 PMSubject: Re: ( ) My son

Oh boy, do I know exactly what you're saying. I've worried about not being able to handle my son in the future-- as he gets bigger and stronger. I'm just putting a whole lot of hope into what we have started now. (((hugs)))

Jen

From: Chambers <missjen0124> Sent: Sunday, October 11, 2009 12:33:28 PMSubject: Re: ( ) My son

I'm pretty much in the same boat as you. Just today my son was mad that he didn't earn a small prize at Walmart, so he began throwing things off the shelves. I didn't want to scream or yell, so I thought he might stop if I didn't show him attention for it. Boy was I wrong! I asked him to put the things back like he found it, and he began to throw more. I'm not sure what to do either. He's getting worse and worse everyday, where I'm not even sure that I can handle him anymore, and he's only 7. What's going to happen when he's doing this at 12 and 13, or even as an adult. I'm definitely sinking more and more into a depression over this, because I have no one who knows what I'm going through. People say "oh, he's not that bad" but I know they're just being nice. What do you do when you're just so tired, and feel like you have nothing left to give?

From: "barefootmamma@ sbcglobal. net" <barefootmamma@ sbcglobal. net> Sent: Sun, October 11, 2009 11:19:36 AMSubject: ( ) My son

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

[Guest guest]

Oh Jen,,,,would I love to pick your brain!!!!!So,,,,when you say you "found it",,,,,,,did you find it by trial and error or by research?

From: barefootmamma@ sbcglobal. net <barefootmamma@ sbcglobal. net>Subject: ( ) My son Date: Sunday, October 11, 2009, 9:19 AM

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

[Guest guest]

Thank you for this!  I make mistakes with all my kids, it just seems that the ones I make with my AS son are magnified.JenFrom: kell_corg1 <kell_corg1@...> Sent: Tuesday, October 13, 2009 10:39:32 AMSubject: Re:

( ) My son

 

Although I took my son out of kidergarten before I knew what was going on to wait a year, he was also restrained a couple of times and it was awful...thank goodness kids are resilient and I am sure he will be fine. It is heartbraking to picture them with a virtual stranger be restarined into a chair, but they like me had no idea what to do. He was not yet even diagnosed with asperger's, I thought he was just very strong willed. He would throw things, hit kick tear stuff off of the walls, and essentially was a danger to those around him. I cried everday and finally just pulled him out and started researching like crazya nd took him to his ped who confirmed that he probably had aspergers and set us up with a behavioral pediatrician and Easter Seals program that will now help train his teachers and staff with how to handle him, YAY!!

Anyway, we can't beat ourselves up for this...it is so hard to always know what to do and how much infor to give about our kids. They do require special skills and frankly I don't always handle it right. I try to give the teachers and staff the benefit of the doubt and to their credit they were ALWAYS very up front with me about EVERYTHING. Sometimes I would wish I knew less, LOL!

>

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > >

> >>

> >My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.

> >

> >>We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in general.

> >

> >>Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!

> >

> >>I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something.

> >

> >>So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?

> >

> >>At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.

> >

> >>Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE transition of moving several states away.

> >

> >>I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

> >

> >

>

[Guest guest]

I was actually doing a case for someone else.  Their remedy turned out to be Veratrum, and something clicked in me and I knew it was the right one for my son.  So I wasn't studying for him specifically, but I was looking at that remedy at the time.  I hope that doesn't sound too odd.  That's the best way I can explain it.JenFrom: and/or Robin Lemke <jrisjs@...> Sent: Tuesday, October 13, 2009 10:58:19 PMSubject: Re: ( ) My son

 

Oh Jen,,,,would I love to pick your brain!!!!!So,,,,when you say you "found it",,,,,,,did you find it by trial and error or by research?

From: barefootmamma@ sbcglobal. net <barefootmamma@ sbcglobal. net>Subject: ( ) My son Date: Sunday, October 11, 2009, 9:19 AM

 

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

[Guest guest]

Dear jo,After reading Dr. -McBride's book, I also blamed myself for my son's issues but now understand it's not my fault. We were all raised in the environment where Mc's, processed food and overuse of antibiotics are the norm.What I also found helpful for my son was delayed food sensitivity testing (IgE) and acute allergy testing. Like your son, he also had dark circles under his eyes, which can be a symptom of food allergy. We discovered he has an acute allergy to eggs and numerous food sensitivities (apples, coconut, wheat, dairy, rice). The food sensitivities will heal, thankfully, but he's been on a very restricted diet for almost 2 years. A comprehensive stool analysis also helped us understand the imbalances in his gut so that we could address them. It really seems that dairy is an issue for your son given the intolerance to yogurt. I would take him off all dairy.What I found helpful for me is a probiotic called Syntol. I had problems with yeast and this clears out the yeast and will help repopulate the gut and detox the body. If your son can swallow pills, this could be helpful to him. I actually take it with the Bio-Kult made by Dr. -McBride. Syntol is widely available for purchase on the Internet.I haven't done many fermented foods with my son. People who have an overgrowth of yeast in their gut often have trouble tolerating fermented foods. I do give him raw fermented fruit juice from Whole Foods (Kombucha, the Synergy brand). He really likes the grape one. He also eats Miso from South River Miso Company (the only organic, handmade miso available).I've learned that it really takes time to heal. Kids and adults who don't have the healthy bacteria in their gut first have to get rid of yeast and inflammation before the gut can heal and then once the gut heals it takes time to build up the 5 lbs. or so of healthy bacteria that should be living there. I've been doing this with my son for about 2 years now and only now in the last few months have we finally healed the gut and the good bacteria is starting to live there (we know this from recent stool analysis).I've also learned that trying different probiotics is helpful. Like I mentioned, the Syntol was helpful for me to take with the Bio-Kult.Dr. Cambell-McBride and Donna Gates have a 6 part series on youtube. Here's part 1: http://www.youtube.com/watch?v=nLP0Ijo2CK4There are lots of us out there struggling but improving, although it seems like a long, slow slog. There is a path to healing whether it is GAPS or BED. I believe that multiple approaches are helpful and that there isn't a single approach that works for everyone.On Nov 13, 2009, at 6:01 AM, maryjos wrote:

I will just answer everything and respond here.

My son is 11 and was not vaccinated. I believe exposure to mold did not help matters. He started having seizures at age 3 and regressed. He now has hardly any speech and does not do much, he is severe. He has seizures and allergies which I always thought triggered the seizures although now I know it is probably more because he cannot digest his food.

At age 5 he was having seizures every minute with 17 grand mals a day. He was in and out of the hospitals and stayed sometimes for a month at a time. No one helped.

We finally went to a Homeopathic dr who had him 85% seizure free in 3 days. We had to learn that Mc's could not be a part of his diet....

He has been eating a perfect diet since and does not even know what fries, cake or pop are. No nuggets, no pizza...

We have been to 2 DANS and many holistic drs. We have tried the biomedical route and were spending $800-$1000 a month on supplements. We did this for years.

I bought the book Breaking the Vicious Cycle and was very excited about that. We were diligent about it for at least 6 months maybe closer to a year and saw no changes. I was on the groups and had personal help. I had a hard time getting the yogurt in him without causing seizures though. I was milking our own goats and making him yogurt from that. I was crushed that the diet didn't work, I had such high hopes.

I tried the fermenting thing and learned a little about GAPS and BED. Unfortunately we lived in a house with mold problems and fermenting in this atmosphere was a disaster. Plus my kitchen was very tiny and there was no where to put anything.

He is a very docile sweet sweet child. He is actually beautiful and I get told that quite a bit. He has beautiful skin although he usually has circle under his eyes. He is very thin. He never has a bloated stomach and I never see him curled up with cramps. He seems to have normal stools and I did read quickly last night on Danna's website what they are supposed to look like. He will not communicate with me if he doesn't feel good. Many days he just wants to sit on the couch and sometimes nap.

I use Bentonite Clay for my son since it detoxes mold. he had increase speech with the first dose. He may have messed up stools but the clay tends to firm them up, so I don't know.

Anyhow, I think all of you are very caring people and I appreciate the time all of you have taken to read and respond to my earlier posts.

I am going to do this diet and I know it will help, with all of our health issues. I cried when I heard dr natasha and donna explaining how it comes from the mother. I have been sick my entire life and it got passed on to my children. It just makes so much sense.

jo

I had ordered the BED book when I found GAPS so I am going to do BED. Dr Natasha has a fermented oil I am going to get on her website and her probiotic.

=

[Guest guest]

I also forgot to mention that the fermented cod liver oil tastes yucky. I would recommend getting the capsules that have the X-Factor Gold butter oil (lactose and casein free) and cod liver oil in them by Green Pastures. The X Factor Gold oil is essential for absorption of the cod liver oil.On Nov 13, 2009, at 6:01 AM, maryjos wrote:

I will just answer everything and respond here.

My son is 11 and was not vaccinated. I believe exposure to mold did not help matters. He started having seizures at age 3 and regressed. He now has hardly any speech and does not do much, he is severe. He has seizures and allergies which I always thought triggered the seizures although now I know it is probably more because he cannot digest his food.

At age 5 he was having seizures every minute with 17 grand mals a day. He was in and out of the hospitals and stayed sometimes for a month at a time. No one helped.

We finally went to a Homeopathic dr who had him 85% seizure free in 3 days. We had to learn that Mc's could not be a part of his diet....

He has been eating a perfect diet since and does not even know what fries, cake or pop are. No nuggets, no pizza...

We have been to 2 DANS and many holistic drs. We have tried the biomedical route and were spending $800-$1000 a month on supplements. We did this for years.

I bought the book Breaking the Vicious Cycle and was very excited about that. We were diligent about it for at least 6 months maybe closer to a year and saw no changes. I was on the groups and had personal help. I had a hard time getting the yogurt in him without causing seizures though. I was milking our own goats and making him yogurt from that. I was crushed that the diet didn't work, I had such high hopes.

I tried the fermenting thing and learned a little about GAPS and BED. Unfortunately we lived in a house with mold problems and fermenting in this atmosphere was a disaster. Plus my kitchen was very tiny and there was no where to put anything.

He is a very docile sweet sweet child. He is actually beautiful and I get told that quite a bit. He has beautiful skin although he usually has circle under his eyes. He is very thin. He never has a bloated stomach and I never see him curled up with cramps. He seems to have normal stools and I did read quickly last night on Danna's website what they are supposed to look like. He will not communicate with me if he doesn't feel good. Many days he just wants to sit on the couch and sometimes nap.

I use Bentonite Clay for my son since it detoxes mold. he had increase speech with the first dose. He may have messed up stools but the clay tends to firm them up, so I don't know.

Anyhow, I think all of you are very caring people and I appreciate the time all of you have taken to read and respond to my earlier posts.

I am going to do this diet and I know it will help, with all of our health issues. I cried when I heard dr natasha and donna explaining how it comes from the mother. I have been sick my entire life and it got passed on to my children. It just makes so much sense.

jo

I had ordered the BED book when I found GAPS so I am going to do BED. Dr Natasha has a fermented oil I am going to get on her website and her probiotic.

=

[Guest guest]

Too late, already ordered the oil but I did order the biokult too. We did the

allergy testing and the stools etc... I think we have done it all. We do the x

factor butter but we get it fresh from an organic farm nearby. Sally Fallon

from Nourishing Traditions actually visited this farm. I am pretty lucky.

I did NAET for my son and he went from being able to eat 3 foods to eating many.

Before that he would have a seizure from even many of the supplements.

I am a holistic dog breeder and have a page on NAET if anyone is interested in

reading about it.

jo

www.buttercuppuppies.com

>

> > I will just answer everything and respond here.

> >

> > My son is 11 and was not vaccinated. I believe exposure to mold did

> > not help matters. He started having seizures at age 3 and regressed.

> > He now has hardly any speech and does not do much, he is severe. He

> > has seizures and allergies which I always thought triggered the

> > seizures although now I know it is probably more because he cannot

> > digest his food.

> >

> > At age 5 he was having seizures every minute with 17 grand mals a

> > day. He was in and out of the hospitals and stayed sometimes for a

> > month at a time. No one helped.

> >

> > We finally went to a Homeopathic dr who had him 85% seizure free in

> > 3 days. We had to learn that Mc's could not be a part of his

> > diet....

> >

> > He has been eating a perfect diet since and does not even know what

> > fries, cake or pop are. No nuggets, no pizza...

> >

> > We have been to 2 DANS and many holistic drs. We have tried the

> > biomedical route and were spending $800-$1000 a month on

> > supplements. We did this for years.

> >

> > I bought the book Breaking the Vicious Cycle and was very excited

> > about that. We were diligent about it for at least 6 months maybe

> > closer to a year and saw no changes. I was on the groups and had

> > personal help. I had a hard time getting the yogurt in him without

> > causing seizures though. I was milking our own goats and making him

> > yogurt from that. I was crushed that the diet didn't work, I had

> > such high hopes.

> >

> > I tried the fermenting thing and learned a little about GAPS and

> > BED. Unfortunately we lived in a house with mold problems and

> > fermenting in this atmosphere was a disaster. Plus my kitchen was

> > very tiny and there was no where to put anything.

> >

> > He is a very docile sweet sweet child. He is actually beautiful and

> > I get told that quite a bit. He has beautiful skin although he

> > usually has circle under his eyes. He is very thin. He never has a

> > bloated stomach and I never see him curled up with cramps. He seems

> > to have normal stools and I did read quickly last night on Danna's

> > website what they are supposed to look like. He will not communicate

> > with me if he doesn't feel good. Many days he just wants to sit on

> > the couch and sometimes nap.

> >

> > I use Bentonite Clay for my son since it detoxes mold. he had

> > increase speech with the first dose. He may have messed up stools

> > but the clay tends to firm them up, so I don't know.

> >

> > Anyhow, I think all of you are very caring people and I appreciate

> > the time all of you have taken to read and respond to my earlier

> > posts.

> >

> > I am going to do this diet and I know it will help, with all of our

> > health issues. I cried when I heard dr natasha and donna explaining

> > how it comes from the mother. I have been sick my entire life and it

> > got passed on to my children. It just makes so much sense.

> >

> > jo

> >

> > I had ordered the BED book when I found GAPS so I am going to do

> > BED. Dr Natasha has a fermented oil I am going to get on her website

> > and her probiotic.

> >

> >

>

[Guest guest]

jo,

My heat breaks for your son, but he is lucky to have a dedicated

mom like you who doesn’t give up on him!

Too, I am wondering, where do you get the stool and allergy

testing done? A regular doctor or a specialist? What do they test for? I think

my kids are okay, but they are pretty little and my oldest is a super picky

eater – so, I wonder if that means anything. I have personally had issues,

which led me to the GAPS stuff. So, I figure maybe I could pass stuff on and

maybe better get a baseline for yeast etc? but have no idea how do that.

Thanks

kelly

From:

[mailto: ] On

Behalf Of maryjos

Sent: Friday, November 13, 2009 10:58 PM

Subject: [ ] Re: My Son

Too late, already ordered the oil but I did

order the biokult too. We did the allergy testing and the stools etc... I think

we have done it all. We do the x factor butter but we get it fresh from an

organic farm nearby. Sally Fallon from Nourishing Traditions actually visited

this farm. I am pretty lucky.

I did NAET for my son and he went from being able to eat 3 foods to eating

many. Before that he would have a seizure from even many of the supplements.

I am a holistic dog breeder and have a page on NAET if anyone is interested in

reading about it.

jo

www.buttercuppuppies.com

>

> > I will just answer everything and respond here.

> >

> > My son is 11 and was not vaccinated. I believe exposure to mold did

> > not help matters. He started having seizures at age 3 and regressed.

> > He now has hardly any speech and does not do much, he is severe. He

> > has seizures and allergies which I always thought triggered the

> > seizures although now I know it is probably more because he cannot

> > digest his food.

> >

> > At age 5 he was having seizures every minute with 17 grand mals a

> > day. He was in and out of the hospitals and stayed sometimes for a

> > month at a time. No one helped.

> >

> > We finally went to a Homeopathic dr who had him 85% seizure free in

> > 3 days. We had to learn that Mc's could not be a part of his

> > diet....

> >

> > He has been eating a perfect diet since and does not even know what

> > fries, cake or pop are. No nuggets, no pizza...

> >

> > We have been to 2 DANS and many holistic drs. We have tried the

> > biomedical route and were spending $800-$1000 a month on

> > supplements. We did this for years.

> >

> > I bought the book Breaking the Vicious Cycle and was very excited

> > about that. We were diligent about it for at least 6 months maybe

> > closer to a year and saw no changes. I was on the groups and had

> > personal help. I had a hard time getting the yogurt in him without

> > causing seizures though. I was milking our own goats and making him

> > yogurt from that. I was crushed that the diet didn't work, I had

> > such high hopes.

> >

> > I tried the fermenting thing and learned a little about GAPS and

> > BED. Unfortunately we lived in a house with mold problems and

> > fermenting in this atmosphere was a disaster. Plus my kitchen was

> > very tiny and there was no where to put anything.

> >

> > He is a very docile sweet sweet child. He is actually beautiful and

> > I get told that quite a bit. He has beautiful skin although he

> > usually has circle under his eyes. He is very thin. He never has a

> > bloated stomach and I never see him curled up with cramps. He seems

> > to have normal stools and I did read quickly last night on Danna's

> > website what they are supposed to look like. He will not communicate

> > with me if he doesn't feel good. Many days he just wants to sit on

> > the couch and sometimes nap.

> >

> > I use Bentonite Clay for my son since it detoxes mold. he had

> > increase speech with the first dose. He may have messed up stools

> > but the clay tends to firm them up, so I don't know.

> >

> > Anyhow, I think all of you are very caring people and I appreciate

> > the time all of you have taken to read and respond to my earlier

> > posts.

> >

> > I am going to do this diet and I know it will help, with all of our

> > health issues. I cried when I heard dr natasha and donna explaining

> > how it comes from the mother. I have been sick my entire life and it

> > got passed on to my children. It just makes so much sense.

> >

> > jo

> >

> > I had ordered the BED book when I found GAPS so I am going to do

> > BED. Dr Natasha has a fermented oil I am going to get on her website

> > and her probiotic.

> >

> >

>

[Guest guest]

I would love to read about NAET if you can post the link to your page! I'm determined to try everything to heal my son's egg allergy.On Nov 13, 2009, at 7:57 PM, maryjos wrote:

Too late, already ordered the oil but I did order the biokult too. We did the allergy testing and the stools etc... I think we have done it all. We do the x factor butter but we get it fresh from an organic farm nearby. Sally Fallon from Nourishing Traditions actually visited this farm. I am pretty lucky.

I did NAET for my son and he went from being able to eat 3 foods to eating many. Before that he would have a seizure from even many of the supplements.

I am a holistic dog breeder and have a page on NAET if anyone is interested in reading about it.

jo

www.buttercuppuppies.com

>

> > I will just answer everything and respond here.

> >

> > My son is 11 and was not vaccinated. I believe exposure to mold did

> > not help matters. He started having seizures at age 3 and regressed.

> > He now has hardly any speech and does not do much, he is severe. He

> > has seizures and allergies which I always thought triggered the

> > seizures although now I know it is probably more because he cannot

> > digest his food.

> >

> > At age 5 he was having seizures every minute with 17 grand mals a

> > day. He was in and out of the hospitals and stayed sometimes for a

> > month at a time. No one helped.

> >

> > We finally went to a Homeopathic dr who had him 85% seizure free in

> > 3 days. We had to learn that Mc's could not be a part of his

> > diet....

> >

> > He has been eating a perfect diet since and does not even know what

> > fries, cake or pop are. No nuggets, no pizza...

> >

> > We have been to 2 DANS and many holistic drs. We have tried the

> > biomedical route and were spending $800-$1000 a month on

> > supplements. We did this for years.

> >

> > I bought the book Breaking the Vicious Cycle and was very excited

> > about that. We were diligent about it for at least 6 months maybe

> > closer to a year and saw no changes. I was on the groups and had

> > personal help. I had a hard time getting the yogurt in him without

> > causing seizures though. I was milking our own goats and making him

> > yogurt from that. I was crushed that the diet didn't work, I had

> > such high hopes.

> >

> > I tried the fermenting thing and learned a little about GAPS and

> > BED. Unfortunately we lived in a house with mold problems and

> > fermenting in this atmosphere was a disaster. Plus my kitchen was

> > very tiny and there was no where to put anything.

> >

> > He is a very docile sweet sweet child. He is actually beautiful and

> > I get told that quite a bit. He has beautiful skin although he

> > usually has circle under his eyes. He is very thin. He never has a

> > bloated stomach and I never see him curled up with cramps. He seems

> > to have normal stools and I did read quickly last night on Danna's

> > website what they are supposed to look like. He will not communicate

> > with me if he doesn't feel good. Many days he just wants to sit on

> > the couch and sometimes nap.

> >

> > I use Bentonite Clay for my son since it detoxes mold. he had

> > increase speech with the first dose. He may have messed up stools

> > but the clay tends to firm them up, so I don't know.

> >

> > Anyhow, I think all of you are very caring people and I appreciate

> > the time all of you have taken to read and respond to my earlier

> > posts.

> >

> > I am going to do this diet and I know it will help, with all of our

> > health issues. I cried when I heard dr natasha and donna explaining

> > how it comes from the mother. I have been sick my entire life and it

> > got passed on to my children. It just makes so much sense.

> >

> > jo

> >

> > I had ordered the BED book when I found GAPS so I am going to do

> > BED. Dr Natasha has a fermented oil I am going to get on her website

> > and her probiotic.

> >

> >

>

=

[Guest guest]

The NAET info is on my website. I am a holistic dog breeder but I had to do a

page on NAET I was so excited about how it works. I do think it is temporary

though as we do have to heal our intestines. I also do muscle testing for us

and it is an invalyuable tool. One of our DANS taught us.

Thank you for your kind words . I know many of us are full of love and

dedicated or we wouldn't be on these groups.

I had any stool testing done through a DAN and the allergy testing through our

family dr. It is a simple blood draw. Boy were we shocked when it came back

allergic to everything we tested for.

jo

> >

> > > I will just answer everything and respond here.

> > >

> > > My son is 11 and was not vaccinated. I believe exposure to mold did

> > > not help matters. He started having seizures at age 3 and regressed.

> > > He now has hardly any speech and does not do much, he is severe. He

> > > has seizures and allergies which I always thought triggered the

> > > seizures although now I know it is probably more because he cannot

> > > digest his food.

> > >

> > > At age 5 he was having seizures every minute with 17 grand mals a

> > > day. He was in and out of the hospitals and stayed sometimes for a

> > > month at a time. No one helped.

> > >

> > > We finally went to a Homeopathic dr who had him 85% seizure free in

> > > 3 days. We had to learn that Mc's could not be a part of his

> > > diet....

> > >

> > > He has been eating a perfect diet since and does not even know what

> > > fries, cake or pop are. No nuggets, no pizza...

> > >

> > > We have been to 2 DANS and many holistic drs. We have tried the

> > > biomedical route and were spending $800-$1000 a month on

> > > supplements. We did this for years.

> > >

> > > I bought the book Breaking the Vicious Cycle and was very excited

> > > about that. We were diligent about it for at least 6 months maybe

> > > closer to a year and saw no changes. I was on the groups and had

> > > personal help. I had a hard time getting the yogurt in him without

> > > causing seizures though. I was milking our own goats and making him

> > > yogurt from that. I was crushed that the diet didn't work, I had

> > > such high hopes.

> > >

> > > I tried the fermenting thing and learned a little about GAPS and

> > > BED. Unfortunately we lived in a house with mold problems and

> > > fermenting in this atmosphere was a disaster. Plus my kitchen was

> > > very tiny and there was no where to put anything.

> > >

> > > He is a very docile sweet sweet child. He is actually beautiful and

> > > I get told that quite a bit. He has beautiful skin although he

> > > usually has circle under his eyes. He is very thin. He never has a

> > > bloated stomach and I never see him curled up with cramps. He seems

> > > to have normal stools and I did read quickly last night on Danna's

> > > website what they are supposed to look like. He will not communicate

> > > with me if he doesn't feel good. Many days he just wants to sit on

> > > the couch and sometimes nap.

> > >

> > > I use Bentonite Clay for my son since it detoxes mold. he had

> > > increase speech with the first dose. He may have messed up stools

> > > but the clay tends to firm them up, so I don't know.

> > >

> > > Anyhow, I think all of you are very caring people and I appreciate

> > > the time all of you have taken to read and respond to my earlier

> > > posts.

> > >

> > > I am going to do this diet and I know it will help, with all of our

> > > health issues. I cried when I heard dr natasha and donna explaining

> > > how it comes from the mother. I have been sick my entire life and it

> > > got passed on to my children. It just makes so much sense.

> > >

> > > jo

> > >

> > > I had ordered the BED book when I found GAPS so I am going to do

> > > BED. Dr Natasha has a fermented oil I am going to get on her website

> > > and her probiotic.

> > >

> > >

> >

>

[Guest guest]

Hi ,

The people on this group are far more experienced than I am.

I am just wondering how old is your son?

Kathe

<><

my son

Hi, I'm new to this group. Could you please help me? I'm having to decide

between 2 surgeons. Has anyone heard of Dr. Stasikelis, or Dr.

Frino. My son needs a spinal fusion. Thanks for your help. Sincerely,

[Guest guest]

Hi Kathe,

My son is almost 13 years old. He has 2 curves. One curve is already at 53

degrees, and the other curve is around 25 degrees. This is all new to me and

very scary. Thanks for your help Kathe.

>

> Hi ,

> The people on this group are far more experienced than I am.

> I am just wondering how old is your son?

> Kathe

> <><

>

> my son

>

> Hi, I'm new to this group. Could you please help me? I'm having to decide

between 2 surgeons. Has anyone heard of Dr. Stasikelis, or Dr.

Frino. My son needs a spinal fusion. Thanks for your help. Sincerely,

>

>

>

>

>

[Guest guest]

,

I am a 50 year old male. I wore a Milwaukee Brace (rarely used anymore except

for very high thoracic curves), and a TLSO (widely used since the late 1970's)

while a teenager from 1976 -- 1980. A TLSO is often referred to as a " Boston

Brace " .

I had a spinal fusion surgery at age 26. Spinal fusion surgeries are very

difference since the mid 1980's from surgeries performed in the 1960's, 1970's,

and early 1980's due to the instrumentation used (earlier instrumentation, i.e.

Harrington Rods, are now known to cause problems in adults who had such

surgeries). Hence, adults with scoliosis are very different from children/teens.

Adults often have pain relating to scoliosis. Children/teens rarely do.

Therefore, you (and/or your son) may find a number of other

scoliosis lists of value: MOMSUPPORT, Scoliosis-In-Children, Teenscoliosis, and

scoliosisteens. Go to , and search for " scoliosis " to find many

other groups.

As far as finding doctors, go to WWW.SRS.ORG. This is the Scoliosis Research

Society's web site. SRS members are orthopedic surgeons who sub specialize in

the treatment of scoliosis. Click on " Find A Specialist " (I just did a " Quick

Search " , and found J. Stasikelis, MD; but, not Frinco, M.D.) . FYI:

Don't take the SRS web site as an end all in finding a surgeon as many very good

spinal orthopedic surgeons are not members; however, it is a GREAT place to

start!!

Hope

this helps!!

S.

********************************************************************************\

**********************************************************************

In a message dated 11/23/09 18:07:37 Eastern Standard Time,

susanbscurlock@... writes:

Hi, I'm new to this group. Could you please help me? I'm having to decide

between 2 surgeons. Has anyone heard of Dr. Stasikelis, or Dr. Frino.

My son needs a spinal fusion. Thanks for your help. Sincerely,

[Guest guest]

>Hello ,

It's SO important to go to an experienced scoliosis surgeon. If you live in

North Carolina, the doctor you should contact is Lloyd Hey – www.lloydhey.com or

919-790-1717. He is on 3404 Wake Forest Road, #203, Raleigh 27609.

On the other hand, your son would certainly benefit from an intensive exercise

program, called Schroth (www.scoliosisrehab.com), but he has to be EXTREMELY

motivated and committed to doing the exercises daily and forever. Ideally, it's

best to avoid surgery, but with such a severe curve, it's understandable if he

chooses the surgery. Just be aware that surgery may result in complications

later in his life.

I had my first surgery, for a 56 degree lumbar curve in the 1970s when I was 18.

As you may know, the technology used back then (Harrington rods) caused a

problem called Flatback Syndrome, and everyone who had that surgery (between the

late 1960s and late 1990s) requires revision surgery. I had 20 good years

post-surgery, but then the fusion began breaking down and I developed Flatback.

I got to the point where I was in so much pain I couldn't function (and had to

quit my job). I had my revision in 2003 in NY by Dr. Boachie. I'm much better

now though limited in my activities….The newer rod system is an improvement and

so your son, if he does undergo a fusion, will hopefully NOT have the problems I

had. But I've been hearing that even the new rod system can develop problems.

I hope this has been helpful. I wish you and your family the best of luck.

Andy Stanton

Boulder CO

[Guest guest]

Andy,

I have to correct something you said. Harrington Rods have not been used since

the late 1980's/early 1990's. NOT the late 1990's. I had my surgeries in 1996.

My instrumentation is Acromed. A generic version of TSRH Instrumentation. Hence,

the newer methods had been used long enough that generic version were then

available.

S.

********************************************************************************\

********************************************************************

In a message dated 11/26/09 16:49:41 Eastern Standard Time,

andrastanton@... writes:

>Hello ,

It's SO important to go to an experienced scoliosis surgeon. If you live in

North Carolina, the doctor you should contact is Lloyd Hey – www.lloydhey.com

or 919-790-1717. He is on 3404 Wake Forest Road, #203, Raleigh 27609.

On the other hand, your son would certainly benefit from an intensive exercise

program, called Schroth (www.scoliosisrehab.com), but he has to be EXTREMELY

motivated and committed to doing the exercises daily and forever. Ideally, it's

best to avoid surgery, but with such a severe curve, it's understandable if he

chooses the surgery. Just be aware that surgery may result in complications

later in his life.

I had my first surgery, for a 56 degree lumbar curve in the 1970s when I was 18.

As you may know, the technology used back then (Harrington rods) caused a

problem called Flatback Syndrome, and everyone who had that surgery (between the

late 1960s and late 1990s) requires revision surgery. I had 20 good years

post-surgery, but then the fusion began breaking down and I developed Flatback.

I got to the point where I was in so much pain I couldn't function (and had to

quit my job). I had my revision in 2003 in NY by Dr. Boachie. I'm much better

now though limited in my activitiesÂ….The newer rod system is an improvement and

so your son, if he does undergo a fusion, will hopefully NOT have the problems I

had. But I've been hearing that even the new rod system can develop problems.

I hope this has been helpful. I wish you and your family the best of luck.

Andy Stanton

Boulder CO

[Guest guest]

Andy,

I know you were trying to be supportive to in her situation with

facing surgery for her son, but I think you do a great disservice to state that

you've been hearing that " even the new rod system can develop problems. "

Where have you 'heard' this? Is this fact? Is there a study stating

this? ANY surgery can have complications no matter where it is on the body, is

that what you were referring to?

A parent facing the most difficult decision doesn't need more fear, just

facts. On this site so many of us old-timers write about problems 30 years

out from our very dated spinal fusion surgeries that parents of teens might

think the Harrington and other techniques use before 15 years ago are

still in effect and will happen to their teen. Not true.

Parents don't realize the progression that will continue after 45% if left

untreated like daily pain, limitations, and lung compromise as we age as

well as health insurance that many of us can't get. If I recall 's

son has a 50+ curve. She can not go forward without facing his surgery with

strength and determination. Using exercise only on his advanced curve is

not dodging the bullet, it is negligence.

Jolene...fusion 1960

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

Very well stated, Jolene!! The methods (instrumentations) used and the

recuperation from Harrington Rod days (pre-1984) vs post-1984 is a walk in the

park compared to what patients with Harrington Rods endured. Six to eight months

on total bed rest while in a body cast vs out of bed within one to two days

walking the halls of the hospital floor with NO body cast, and are out of the

hospital within 5 to 7 days (Adults often wear a TLSO brace for a number of

months. Children / teens generally do not). Although there have been limited

advances since my 1996 surgeries, one major advance is in the area of spinal

cord monitoring. The only " real " complication to speak of that is true today as

during Harrington Rod days is pseudoarthrosis (area of non-fusion), and that

happens in well less than 5% of all cases.

FYI: Even in the area of bracing there have been numerous advances. When I got

my Milwaukee Brace in 1975 that was the brace most widely used to treat

mild/moderate scoliosis in children/teen. During the early 1970's a " new " brace

became available, the TLSO (thoracic-lumbar-sacral orthosis), often known as the

" Boston Brace " ; however, it was not widely used until the late 1970's (it is now

the standard in brace treatment). I got the TLSO in 1978 and wore it during the

day, and the Milwaukee at night until the weaning period started. Since that

time, the ton Bending Brace became available. It is often referred to as

" the nighttime " brace as it is only worn while sleeping.

S.

********************************************************************************\

*****************************************************************************

In a message dated 11/28/09 20:29:34 Eastern Standard Time, Buttonjo writes:

Andy,

I know you were trying to be supportive to in her situation with

facing surgery for her son, but I think you do a great disservice to state that

you've been hearing that " even the new rod system can develop problems. "

Where have you 'heard' this? Is this fact? Is there a study stating

this? ANY surgery can have complications no matter where it is on the body, is

that what you were referring to?

A parent facing the most difficult decision doesn't need more fear, just

facts. On this site so many of us old-timers write about problems 30 years

out from our very dated spinal fusion surgeries that parents of teens might

think the Harrington and other techniques use before 15 years ago are

still in effect and will happen to their teen. Not true.

Parents don't realize the progression that will continue after 45% if left

untreated like daily pain, limitations, and lung compromise as we age as

well as health insurance that many of us can't get. If I recall 's

son has a 50+ curve. She can not go forward without facing his surgery with

strength and determination. Using exercise only on his advanced curve is

not dodging the bullet, it is negligence.

Jolene...fusion 1960

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

Greetings,

While I can not give you names of studies or patients/families that are

unsatisfied with surgery, I will tell you that to think they are not out there

is plain naive.

My daughter was diagnosed in December last year, and I have talked to many

parents who are seeking any and all alternatives to surgery and bracing as are

we.

It is common sense that there are risks and possible complications with any

surgery.

There are people who do not subscribe to standard or mainstream " medicine " .

There is a whole side to scoliosis therapy, treatment and reversal, that does

not require surgery.

I doubt anyone is purposely trying to frighten anyone, but perhaps feel

compelled to make people aware of risks and that there are options to surgery.

This of course while frightening could be thought provoking and life/lifestyle

saving as well.

I certainly would NOT call anyone who tries or recommends trying exercise, or

alternative therapies before surgery neglectful.

Perhaps it is not what you would do or recommend, but people don't join these

groups to get one opinion. We can go to any orthopedist for the one aided

Scoliosis story.

I know I joined to hear different stories and experiences and to pick and choose

what is best for me and my child.

To stifle someone from expressing their thoughts, feelings or experiences will

not benefit any of us.

Peace,

Kathe

<><

Re: my son

Andy,

I know you were trying to be supportive to in her situation with

facing surgery for her son, but I think you do a great disservice to state that

you've been hearing that " even the new rod system can develop problems. "

Where have you 'heard' this? Is this fact? Is there a study stating

this? ANY surgery can have complications no matter where it is on the body, is

that what you were referring to?

A parent facing the most difficult decision doesn't need more fear, just

facts. On this site so many of us old-timers write about problems 30 years

out from our very dated spinal fusion surgeries that parents of teens might

think the Harrington and other techniques use before 15 years ago are

still in effect and will happen to their teen. Not true.

Parents don't realize the progression that will continue after 45% if left

untreated like daily pain, limitations, and lung compromise as we age as

well as health insurance that many of us can't get. If I recall 's

son has a 50+ curve. She can not go forward without facing his surgery with

strength and determination. Using exercise only on his advanced curve is

not dodging the bullet, it is negligence.

Jolene...fusion 1960

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

The new rods can and do most certainly develop all kinds of problems. I'm not

saying this to scare you, but it is a very iffy procedure. I've just finished my

5th surgery which was a partial hardware removal. I had an iliac screw placed in

my joint. For a year and a half I felt like dying, the pain was so extreme. And

I've had lots of pain over the years. I finally had it removed once the discs

that had been re-fused were prenounced fused. Now I'm praying that I haven't

been so damaged that the area won't heal. It's been 8 weeks and I'm still in a

significant amount of pain. Better than when the screw was there, but still not

good.

I had my whole spine fused in 2005. T4-L4 (I'd already been fused L4-L5 the

previous year. My surgeon was very conservative and did as little as possible. I

was doing great. I felt better than I had in years. Then, my rods broke. As it

turned out, I didn't fuse in the L2-L4 area. My ribcage started moving to the

left and the pain was getting bad. I went in for a revision, this time with a

different but highly recommended surgeon, as I'd moved across country. I had to

travel, but not too far. This surgeon ended up doing a 2-part surgery, first

through my front to fuse the remaining disc, S1, because he said it wasn't

looking good, and in through my side to fuse my through the front. 5 days later

he went in through my back. I was in the hospital 10 days and rehab for awhile.

I lost a great deal of weight, which, at 5'11 and only 130 lbs, I couldn't

afford. I dropped to 120. It took a year to gain back 10 lbs. I became extremely

depressed and was in pain

all the time. And there was nothing that could be done until the fusion had

completed. I wish so much that I hadn't let him fuse me to my sacrum, but once

it's done there's no turning back.

I can't know why I didn't fuse-which was why my rods broke. Maybe I did too much

too soon, maybe I didn't eat right or I drank too much wine, too much

stress--I'll never know. But the surgeon's all tell you before they go in, there

are no guarantees. They say " you might feel better, you might feel worse, there

may be no change " . I was warned not to do it unless my quality of life was so

diminished that I felt this was my only option. After 13 years of constant pain

I'd reached that point. I wish more than anything I hadn't had to do it. My body

doesn't move fluidly. I can't reach down to pick things up. My life is forever

changed and I never know if something will happen and I'll be back under the

knife again. Each time I say I can't stand to go through it again, but I do. I

feel like I have no choice, now that I started. This is not to be taken lightly.

And there are most certainly problems that can occur with the rods, the screws

(they found a loose

screw in my thoracic when I had the CT scan before the surgery). Plus I had the

connector removed because it hurt me. So for the 5th time in 5 years I'm

recovering. I'm not the same person I was before all this started.

________________________________

From: S. Sogg <RSSSCOLIOSIS@...>

Scoliosis Treatment

Sent: Thu, November 26, 2009 3:12:26 PM

Subject: Re: Re: my son

 

Andy,

I have to correct something you said. Harrington Rods have not been used since

the late 1980's/early 1990's. NOT the late 1990's. I had my surgeries in 1996.

My instrumentation is Acromed. A generic version of TSRH Instrumentation. Hence,

the newer methods had been used long enough that generic version were then

available.

S.

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* *

In a message dated 11/26/09 16:49:41 Eastern Standard Time, andrastanton@

rocketmail. com writes:

>Hello ,

It's SO important to go to an experienced scoliosis surgeon. If you live in

North Carolina, the doctor you should contact is Lloyd Hey www.lloydhey. com or

919-790-1717. He is on 3404 Wake Forest Road, #203, Raleigh 27609.

On the other hand, your son would certainly benefit from an intensive exercise

program, called Schroth (www.scoliosisrehab .com), but he has to be EXTREMELY

motivated and committed to doing the exercises daily and forever. Ideally, it's

best to avoid surgery, but with such a severe curve, it's understandable if he

chooses the surgery. Just be aware that surgery may result in complications

later in his life.

I had my first surgery, for a 56 degree lumbar curve in the 1970s when I was 18.

As you may know, the technology used back then (Harrington rods) caused a

problem called Flatback Syndrome, and everyone who had that surgery (between the

late 1960s and late 1990s) requires revision surgery. I had 20 good years

post-surgery, but then the fusion began breaking down and I developed Flatback.

I got to the point where I was in so much pain I couldn't function (and had to

quit my job). I had my revision in 2003 in NY by Dr. Boachie. I'm much better

now though limited in my activitiesÂ….The newer rod system is an improvement and

so your son, if he does undergo a fusion, will hopefully NOT have the problems I

had. But I've been hearing that even the new rod system can develop problems.

I hope this has been helpful. I wish you and your family the best of luck.

Andy Stanton

Boulder CO

[Guest guest]

For those that try other methods should do so with an orthopedist checking at

the same time. Llweyn

Sent from my BlackBerry device on the Wireless Network

Re: my son

Andy,

I know you were trying to be supportive to in her situation with

facing surgery for her son, but I think you do a great disservice to state that

you've been hearing that " even the new rod system can develop problems. "

Where have you 'heard' this? Is this fact? Is there a study stating

this? ANY surgery can have complications no matter where it is on the body, is

that what you were referring to?

A parent facing the most difficult decision doesn't need more fear, just

facts. On this site so many of us old-timers write about problems 30 years

out from our very dated spinal fusion surgeries that parents of teens might

think the Harrington and other techniques use before 15 years ago are

still in effect and will happen to their teen. Not true.

Parents don't realize the progression that will continue after 45% if left

untreated like daily pain, limitations, and lung compromise as we age as

well as health insurance that many of us can't get. If I recall 's

son has a 50+ curve. She can not go forward without facing his surgery with

strength and determination. Using exercise only on his advanced curve is

not dodging the bullet, it is negligence.

Jolene...fusion 1960

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

Hahaha! One of the top pediatric orthopedists at a Chicago hospital completely

missed my daughters scoliosis for 8 weeks, while searching for why she was

having knee pain and her gate was funny.

He had reports sent to him by PT's stating leg length difference, muscle

imbalance, etc.

Never once looked at her back or hips.

I'd do better checking with a veterinarian!

Ha!

Best wishes,

Kathe

<><

Re: my son

Andy,

I know you were trying to be supportive to in her situation with

facing surgery for her son, but I think you do a great disservice to state that

you've been hearing that " even the new rod system can develop problems. "

Where have you 'heard' this? Is this fact? Is there a study stating

this? ANY surgery can have complications no matter where it is on the body, is

that what you were referring to?

A parent facing the most difficult decision doesn't need more fear, just

facts. On this site so many of us old-timers write about problems 30 years

out from our very dated spinal fusion surgeries that parents of teens might

think the Harrington and other techniques use before 15 years ago are

still in effect and will happen to their teen. Not true.

Parents don't realize the progression that will continue after 45% if left

untreated like daily pain, limitations, and lung compromise as we age as

well as health insurance that many of us can't get. If I recall 's

son has a 50+ curve. She can not go forward without facing his surgery with

strength and determination. Using exercise only on his advanced curve is

not dodging the bullet, it is negligence.

Jolene...fusion 1960

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

I will add more to this. Not only did I have my rods break 2 years after

surgery, but my 15 year old nephew did too. He's now doing fine, about 10 years

later, but he had to have 2 major and very painful surgeries before he was 18.

Now when I see him and ask how he's feeling, he says he has just a " normal

amount of back pain. " At 28, no back pain is normal. I used to say the same

thing. But I hadn't had the surgery. I used alternative methods that worked to

some degree for many years. So, bottom line is, when you have scoliosis having

or not having surgery is a toss up. You have to go with your intuition. My

nephew opted for the surgery. My brother gave him the choice. I on the other

hand didn't want surgery. And I'm glad I waited as long as I did. Maybe things

would've been better if I'd had it when I was younger, but I don't think so. I

was discouraged from it, due to my age and the fact that they didn't know as

much and surgery was much higher risk.

But don't think for a moment that there aren't many risks to this surgery. Some

people feel just fine. Some are fine for awhile and then decline or have

hardware problems, as I did. You can't know how it will turn out, and any good

surgeon will tell you that. My surgeon was very hesistant about performing the

full spinal fusion, but I told him I'd reached my pain limit and I was ready to

die if I couldn't have some relief. So I am better than before the surgery. It's

a shame my rods broke, because I was doing so well up until that happened. So if

your son has surgery, do EVERYTHING possible to prevent stress and strain.

________________________________

From: " mad.monk@... " <mad.monk@...>

Scoliosis Treatment

Sent: Sun, November 29, 2009 3:18:16 PM

Subject: Re: Re: my son

 

For those that try other methods should do so with an orthopedist checking at

the same time. Llweyn

Sent from my BlackBerry device on the Wireless Network

Re: my son

Andy,

I know you were trying to be supportive to in her situation with

facing surgery for her son, but I think you do a great disservice to state that

you've been hearing that " even the new rod system can develop problems. "

Where have you 'heard' this? Is this fact? Is there a study stating

this? ANY surgery can have complications no matter where it is on the body, is

that what you were referring to?

A parent facing the most difficult decision doesn't need more fear, just

facts. On this site so many of us old-timers write about problems 30 years

out from our very dated spinal fusion surgeries that parents of teens might

think the Harrington and other techniques use before 15 years ago are

still in effect and will happen to their teen. Not true.

Parents don't realize the progression that will continue after 45% if left

untreated like daily pain, limitations, and lung compromise as we age as

well as health insurance that many of us can't get. If I recall 's

son has a 50+ curve. She can not go forward without facing his surgery with

strength and determination. Using exercise only on his advanced curve is

not dodging the bullet, it is negligence.

Jolene...fusion 1960

Jolene Morell

Shop online at _www.InheritedButto ns.com_

(http://www.inherite dbuttons. com/)