Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Got on the scale - first 14 pounds gone - woohooo Sandee 12/28/05 Dr. P-Houston, TX 338/324 > > In the week between Christmas and New Years Dr Peraglie added three more > to his list of successful MGB surgeries. All three ladies are doing > beautifully and well on their way to a healthier New Year. It was a > pleasure and a privilege to be there with them, I know you ladies all > toasted 2006 with your favorite flavor Gatorade, can't wait to hear your > success stories. > > A. LeRoy > CELOS Corporate Offices > clr@c... > 704-871-0031 > 704-682-8009 cell > 704-871-0148 fax > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Congrats Sandee...It gets better and better. Monroe Human Resource Administrator 704-682-0260 (cell) 704-871-0031 npm@... www.clos.net Re: UPDATES Got on the scale - first 14 pounds gone - woohooo Sandee 12/28/05 Dr. P-Houston, TX 338/324 > > In the week between Christmas and New Years Dr Peraglie added three more > to his list of successful MGB surgeries. All three ladies are doing > beautifully and well on their way to a healthier New Year. It was a > pleasure and a privilege to be there with them, I know you ladies all > toasted 2006 with your favorite flavor Gatorade, can't wait to hear your > success stories. > > A. LeRoy > CELOS Corporate Offices > clr@c... > 704-871-0031 > 704-682-8009 cell > 704-871-0148 fax > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Congrat's Sandee, I had my surgery in July by DrP and down 73 lbs. Here's to a Healthy New Years. Neighbors Enchanted Glass Creations Stained and Leaded Glass ---------- Original Message ---------------------------------- From: " rican_sandee " <rican_sandee@...> Reply- Date: Thu, 05 Jan 2006 18:09:40 -0000 >Got on the scale - first 14 pounds gone - woohooo > >Sandee >12/28/05 >Dr. P-Houston, TX >338/324 > > >> >> In the week between Christmas and New Years Dr Peraglie added three >more >> to his list of successful MGB surgeries. All three ladies are doing >> beautifully and well on their way to a healthier New Year. It was a >> pleasure and a privilege to be there with them, I know you ladies all >> toasted 2006 with your favorite flavor Gatorade, can't wait to hear >your >> success stories. >> >> A. LeRoy >> CELOS Corporate Offices >> clr@c... >> 704-871-0031 >> 704-682-8009 cell >> 704-871-0148 fax >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2006 Report Share Posted February 18, 2006 > Hi Anne-Marie How interesting to hear of and inspiring to read of his fantastic progress. Some aspects of his profile seem similar to we also have been using Buttar td-dmps for 6 mths and ABA prog for a year- wondered if you had any feedback/suggestions is verbal - just turned four, no longer echolalic but verbal stims, asks questions, uses appropriate language often with adults but not unless prompted with peers IQ - betw 100- 131 depending on test and verbal /non verbal, MUSIC has perfect pitch - identifies notes from human voice, can identify three notes played simultaneously on piano , it's a c a d and an f etc., - can do chords when shown just once G7, Cmajor, minor,f major and minor e major/minor, etc., - unintelligible to his tone-deaf, musical philistine parents .... has been taught these in a few sessions with some ABA input from Music undergrad who does sessions 1 monthly . Have tried to start piano lessons with conventional teacher - don't know how it will work as he needs to introduce more rewards and fun- difficult for non-ABA person to acquire.He does say that J's ability to read rythm from page - ta tati etc. - don;'t have a clue myself is at 8 yr old level - twice chron age. J has also made up tunes, can play with all fingers of r hand (when he wants) and chords simultaneously w left hand. How do you encourage this? Have you any experience of techniues for four yr old? Maths J seems to identify w numbers counts out loud to 100 since about 3, recognises series of numbers, multiples of ten, eleven, knows couple of times tables, knows some basic addition, etc., counting items always been strong, Reading single words at 6.5 yr old level- reads handwriting, incidental signs, books never seen before etc., can read music notes from flashcards We are keen to encourage music to motivate him, give him self-esteem, ability to stay on task and more important- enjoyment! Do you have any ideas? Any input welcome Rhona > Hello all, > > This is an update on (turned 6 in December). > > Chelation: we had 6 months on Buttar protocol TD-DMPS, slow, steady > gains. When I changed the protocol to low, frequent dosing, he went > to pieces. Same with DMSA oral low fequent dosing. Our hands are > fairly tied as far as riding out regressive behaviour is concerned > because school is not very tolerant of these glitches, and we are > hoping to phase out the shadow this year, both for his sake and > because the cost is beyond the joke. So no consistent chelation > since end August. > > > LDN: The last time I posted an update, I think, was after we had > started LDN at 1/5 of full dose and what we were seeing was nothing > short of miraculous - to the extent that I was convinced that this > was his 'magic bullet'. There was little to distinguish him from any > happy bright NT kid his age. This was, alas, a honeymoon period, but > worthwhile nonetheless as it provided a very welcome glimpse of 'the > other side'. > > We are now on LDN full dose on McC's recommendation and is > coming down with bronchitis on a regular basis. Just back on the > aerolin, again.Why this is interesting is because when he was a > baby, he was hospitalised for a month with acute bronchitis and had > a number of relapses after that, none of which was severe, however. > When he regressed at 2 yrs, his repsiratory tract problems vanished > and he was rarely unwell. Now they seem to be coming back, always > the same thing - mild bronchitis. It's almost as though his immune > system is picking up where it left off? > > > VALTREX: During the Christmas break, I started N on valtrex, because > of his obvious post chicken pox freefall into autism and his > repeated attacks of mouth ulcers [controlled by Lysine]. He has > no 'hard signs' per Kurtz. > > Ist 10 days: 2 x 500 mg - much calmer, happier, more talkative.More > with us. Here's an illustration: > loves the itunes programme, and makes his own compilations, > imports songs, and burns his own cd's etc. My mother asked him to > make her a Mp3, which he dutifully did. He brought it to me when it > was ready and said " Here's grandma's MP3. Put it in an envelope. " I > did and handed it to her. He intercepted it and said " Can I give it > to grandma, Mummy? " Ahhhh. > He had a big regression when we went up to full dose - 3 x 250 - > started wandering around with his tongue hanging out, very vacant- > looking and irascible, stimming on videos. > This only lasted 3 days, thankfully. > > Back to school and wonderful - independent, responsive, doing all > his work without excessive prodding. School has agreed to do without > shadow 1x per week and we'll take it from there.He's had four such > days and he's been fine and so has his teacher. And when his shadow > is at school, she is rarely needed. They are putting him into a > higher year for maths - this had always been mooted but the teachers > in question were resistant. Now we have a volunteer! He no longer > tries to bolt at playtime and his piano teacher is very pleased > with his progress and says it's amazing to see a child that age able > to play and sing at the same time, because young kids can't focus on > both activities simultaneously. > > He is opening up to the other kids much more - playing snakes and > ladders - ball games etc, and even got annoyed when he didn't get a > response out of a boy he greeted. Slight improvement re eye contact - > always a BIG problem. Made a Valentine's card unprompted for a > little girl in his class this morning. Makes up jokes, puns etc. > alternate lyrics to songs, eg. REM's 'Wake up bomb' goes form > saying 'I look good in a glass pack' to 'I look good in the > sandpit'!! Lots of happiness coming through, lots of overtures to > play, read to and sing with him. Even made cookies together > yesterday. > > Another change is that I have reduced his billion supplements to > basic vitamins, b12 shots, minerals, amino acids, and fish oils with > no problems. Added Houston Enzymes about 6 weeks ago - had been > using Kirkman prior to that. > > > We had a livid red rash on the front of the knee last week - exactly > like the 2nd degree burn type rashes that we experienced when we > started td-dmps. ????? detox??? > > All in all we are very optimisitc at this point. Of course, in my > usual scientific way, I can't tell whether it's the valtrex or the > LDN or a combination of the two that is doing this! > > We'll be starting the nasal spray when our shots run out, and keep > you posted. We are also seeing Dr Heard for the first time on March > 8th. > > Also we're having his annual WISC assesment doen this week - if he's > well enough - and will post results in terms of progress from this > time last year. > > Slightly unsure how to proceed chelation wise. Lead, more than > mercury being the problem. > > > Anne-Marie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2006 Report Share Posted February 18, 2006 > Hi Anne-Marie How interesting to hear of and inspiring to read of his fantastic progress. Some aspects of his profile seem similar to we also have been using Buttar td-dmps for 6 mths and ABA prog for a year- wondered if you had any feedback/suggestions is verbal - just turned four, no longer echolalic but verbal stims, asks questions, uses appropriate language often with adults but not unless prompted with peers IQ - betw 100- 131 depending on test and verbal /non verbal, MUSIC has perfect pitch - identifies notes from human voice, can identify three notes played simultaneously on piano , it's a c a d and an f etc., - can do chords when shown just once G7, Cmajor, minor,f major and minor e major/minor, etc., - unintelligible to his tone-deaf, musical philistine parents .... has been taught these in a few sessions with some ABA input from Music undergrad who does sessions 1 monthly . Have tried to start piano lessons with conventional teacher - don't know how it will work as he needs to introduce more rewards and fun- difficult for non-ABA person to acquire.He does say that J's ability to read rythm from page - ta tati etc. - don;'t have a clue myself is at 8 yr old level - twice chron age. J has also made up tunes, can play with all fingers of r hand (when he wants) and chords simultaneously w left hand. How do you encourage this? Have you any experience of techniues for four yr old? Maths J seems to identify w numbers counts out loud to 100 since about 3, recognises series of numbers, multiples of ten, eleven, knows couple of times tables, knows some basic addition, etc., counting items always been strong, Reading single words at 6.5 yr old level- reads handwriting, incidental signs, books never seen before etc., can read music notes from flashcards We are keen to encourage music to motivate him, give him self-esteem, ability to stay on task and more important- enjoyment! Do you have any ideas? Any input welcome Rhona > Hello all, > > This is an update on (turned 6 in December). > > Chelation: we had 6 months on Buttar protocol TD-DMPS, slow, steady > gains. When I changed the protocol to low, frequent dosing, he went > to pieces. Same with DMSA oral low fequent dosing. Our hands are > fairly tied as far as riding out regressive behaviour is concerned > because school is not very tolerant of these glitches, and we are > hoping to phase out the shadow this year, both for his sake and > because the cost is beyond the joke. So no consistent chelation > since end August. > > > LDN: The last time I posted an update, I think, was after we had > started LDN at 1/5 of full dose and what we were seeing was nothing > short of miraculous - to the extent that I was convinced that this > was his 'magic bullet'. There was little to distinguish him from any > happy bright NT kid his age. This was, alas, a honeymoon period, but > worthwhile nonetheless as it provided a very welcome glimpse of 'the > other side'. > > We are now on LDN full dose on McC's recommendation and is > coming down with bronchitis on a regular basis. Just back on the > aerolin, again.Why this is interesting is because when he was a > baby, he was hospitalised for a month with acute bronchitis and had > a number of relapses after that, none of which was severe, however. > When he regressed at 2 yrs, his repsiratory tract problems vanished > and he was rarely unwell. Now they seem to be coming back, always > the same thing - mild bronchitis. It's almost as though his immune > system is picking up where it left off? > > > VALTREX: During the Christmas break, I started N on valtrex, because > of his obvious post chicken pox freefall into autism and his > repeated attacks of mouth ulcers [controlled by Lysine]. He has > no 'hard signs' per Kurtz. > > Ist 10 days: 2 x 500 mg - much calmer, happier, more talkative.More > with us. Here's an illustration: > loves the itunes programme, and makes his own compilations, > imports songs, and burns his own cd's etc. My mother asked him to > make her a Mp3, which he dutifully did. He brought it to me when it > was ready and said " Here's grandma's MP3. Put it in an envelope. " I > did and handed it to her. He intercepted it and said " Can I give it > to grandma, Mummy? " Ahhhh. > He had a big regression when we went up to full dose - 3 x 250 - > started wandering around with his tongue hanging out, very vacant- > looking and irascible, stimming on videos. > This only lasted 3 days, thankfully. > > Back to school and wonderful - independent, responsive, doing all > his work without excessive prodding. School has agreed to do without > shadow 1x per week and we'll take it from there.He's had four such > days and he's been fine and so has his teacher. And when his shadow > is at school, she is rarely needed. They are putting him into a > higher year for maths - this had always been mooted but the teachers > in question were resistant. Now we have a volunteer! He no longer > tries to bolt at playtime and his piano teacher is very pleased > with his progress and says it's amazing to see a child that age able > to play and sing at the same time, because young kids can't focus on > both activities simultaneously. > > He is opening up to the other kids much more - playing snakes and > ladders - ball games etc, and even got annoyed when he didn't get a > response out of a boy he greeted. Slight improvement re eye contact - > always a BIG problem. Made a Valentine's card unprompted for a > little girl in his class this morning. Makes up jokes, puns etc. > alternate lyrics to songs, eg. REM's 'Wake up bomb' goes form > saying 'I look good in a glass pack' to 'I look good in the > sandpit'!! Lots of happiness coming through, lots of overtures to > play, read to and sing with him. Even made cookies together > yesterday. > > Another change is that I have reduced his billion supplements to > basic vitamins, b12 shots, minerals, amino acids, and fish oils with > no problems. Added Houston Enzymes about 6 weeks ago - had been > using Kirkman prior to that. > > > We had a livid red rash on the front of the knee last week - exactly > like the 2nd degree burn type rashes that we experienced when we > started td-dmps. ????? detox??? > > All in all we are very optimisitc at this point. Of course, in my > usual scientific way, I can't tell whether it's the valtrex or the > LDN or a combination of the two that is doing this! > > We'll be starting the nasal spray when our shots run out, and keep > you posted. We are also seeing Dr Heard for the first time on March > 8th. > > Also we're having his annual WISC assesment doen this week - if he's > well enough - and will post results in terms of progress from this > time last year. > > Slightly unsure how to proceed chelation wise. Lead, more than > mercury being the problem. > > > Anne-Marie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2006 Report Share Posted February 18, 2006 --- wow your boys are well ahead. how where they before they were diagnosed. nasreen > > > Hi Anne-Marie > How interesting to hear of and inspiring to read of his > fantastic progress. Some aspects of his profile seem similar to > we also have been using Buttar td-dmps for 6 mths and ABA prog for a > year- wondered if you had any feedback/suggestions > > is verbal - just turned four, no longer echolalic but verbal > stims, asks questions, uses appropriate language often with adults > but not unless prompted with peers IQ - betw 100- 131 depending on > test and verbal /non verbal, > > MUSIC > has perfect pitch - identifies notes from human voice, can > identify three notes played simultaneously on piano , it's a c a d > and an f etc., - can do chords when shown just once G7, Cmajor, > minor,f major and minor e major/minor, etc., - unintelligible to his > tone-deaf, musical philistine parents .... has been taught these in a > few sessions with some ABA input from Music undergrad who does > sessions 1 monthly . Have tried to start piano lessons with > conventional teacher - don't know how it will work as he needs to > introduce more rewards and fun- difficult for non-ABA person to > acquire.He does say that J's ability to read rythm from page - ta > tati etc. - don;'t have a clue myself is at 8 yr old level - twice > chron age. J has also made up tunes, can play with all fingers of r > hand (when he wants) and chords simultaneously w left hand. How do > you encourage this? Have you any experience of techniues for four yr > old? > > Maths > J seems to identify w numbers counts out loud to 100 since about 3, > recognises series of numbers, multiples of ten, eleven, knows couple > of times tables, knows some basic addition, etc., counting items > always been strong, > Reading > single words at 6.5 yr old level- reads handwriting, incidental > signs, books never seen before etc., can read music notes from > flashcards > We are keen to encourage music to motivate him, give him self-esteem, > ability to stay on task and more important- enjoyment! > Do you have any ideas? > Any input welcome > > Rhona > > > Hello all, > > > > This is an update on (turned 6 in December). > > > > Chelation: we had 6 months on Buttar protocol TD-DMPS, slow, steady > > gains. When I changed the protocol to low, frequent dosing, he went > > to pieces. Same with DMSA oral low fequent dosing. Our hands are > > fairly tied as far as riding out regressive behaviour is concerned > > because school is not very tolerant of these glitches, and we are > > hoping to phase out the shadow this year, both for his sake and > > because the cost is beyond the joke. So no consistent chelation > > since end August. > > > > > > LDN: The last time I posted an update, I think, was after we had > > started LDN at 1/5 of full dose and what we were seeing was > nothing > > short of miraculous - to the extent that I was convinced that this > > was his 'magic bullet'. There was little to distinguish him from > any > > happy bright NT kid his age. This was, alas, a honeymoon period, > but > > worthwhile nonetheless as it provided a very welcome glimpse > of 'the > > other side'. > > > > We are now on LDN full dose on McC's recommendation and is > > coming down with bronchitis on a regular basis. Just back on the > > aerolin, again.Why this is interesting is because when he was a > > baby, he was hospitalised for a month with acute bronchitis and had > > a number of relapses after that, none of which was severe, however. > > When he regressed at 2 yrs, his repsiratory tract problems vanished > > and he was rarely unwell. Now they seem to be coming back, always > > the same thing - mild bronchitis. It's almost as though his immune > > system is picking up where it left off? > > > > > > VALTREX: During the Christmas break, I started N on valtrex, > because > > of his obvious post chicken pox freefall into autism and his > > repeated attacks of mouth ulcers [controlled by Lysine]. He has > > no 'hard signs' per Kurtz. > > > > Ist 10 days: 2 x 500 mg - much calmer, happier, more talkative.More > > with us. Here's an illustration: > > loves the itunes programme, and makes his own > compilations, > > imports songs, and burns his own cd's etc. My mother asked him to > > make her a Mp3, which he dutifully did. He brought it to me when it > > was ready and said " Here's grandma's MP3. Put it in an envelope. " I > > did and handed it to her. He intercepted it and said " Can I give it > > to grandma, Mummy? " Ahhhh. > > He had a big regression when we went up to full dose - 3 x 250 - > > started wandering around with his tongue hanging out, very vacant- > > looking and irascible, stimming on videos. > > This only lasted 3 days, thankfully. > > > > Back to school and wonderful - independent, responsive, doing all > > his work without excessive prodding. School has agreed to do > without > > shadow 1x per week and we'll take it from there.He's had four such > > days and he's been fine and so has his teacher. And when his shadow > > is at school, she is rarely needed. They are putting him into a > > higher year for maths - this had always been mooted but the > teachers > > in question were resistant. Now we have a volunteer! He no longer > > tries to bolt at playtime and his piano teacher is very pleased > > with his progress and says it's amazing to see a child that age > able > > to play and sing at the same time, because young kids can't focus > on > > both activities simultaneously. > > > > He is opening up to the other kids much more - playing snakes and > > ladders - ball games etc, and even got annoyed when he didn't get a > > response out of a boy he greeted. Slight improvement re eye > contact - > > always a BIG problem. Made a Valentine's card unprompted for a > > little girl in his class this morning. Makes up jokes, puns etc. > > alternate lyrics to songs, eg. REM's 'Wake up bomb' goes form > > saying 'I look good in a glass pack' to 'I look good in the > > sandpit'!! Lots of happiness coming through, lots of overtures to > > play, read to and sing with him. Even made cookies together > > yesterday. > > > > Another change is that I have reduced his billion supplements to > > basic vitamins, b12 shots, minerals, amino acids, and fish oils > with > > no problems. Added Houston Enzymes about 6 weeks ago - had been > > using Kirkman prior to that. > > > > > > We had a livid red rash on the front of the knee last week - > exactly > > like the 2nd degree burn type rashes that we experienced when we > > started td-dmps. ????? detox??? > > > > All in all we are very optimisitc at this point. Of course, in my > > usual scientific way, I can't tell whether it's the valtrex or the > > LDN or a combination of the two that is doing this! > > > > We'll be starting the nasal spray when our shots run out, and keep > > you posted. We are also seeing Dr Heard for the first time on March > > 8th. > > > > Also we're having his annual WISC assesment doen this week - if > he's > > well enough - and will post results in terms of progress from this > > time last year. > > > > Slightly unsure how to proceed chelation wise. Lead, more than > > mercury being the problem. > > > > > > Anne-Marie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 > > > Hi Anne-Marie > > How interesting to hear of and inspiring to read of his > > fantastic progress. Some aspects of his profile seem similar to > > we also have been using Buttar td-dmps for 6 mths and ABA prog for a > > year- wondered if you had any feedback/suggestions > > > > is verbal - just turned four, no longer echolalic but verbal > > stims, asks questions, uses appropriate language often with adults > > but not unless prompted with peers IQ - betw 100- 131 depending on > > test and verbal /non verbal, > > > > MUSIC > > has perfect pitch - identifies notes from human voice, can > > identify three notes played simultaneously on piano , it's a c a d > > and an f etc., - can do chords when shown just once G7, Cmajor, > > minor,f major and minor e major/minor, etc., - unintelligible to his > > tone-deaf, musical philistine parents .... has been taught these in a > > few sessions with some ABA input from Music undergrad who does > > sessions 1 monthly . Have tried to start piano lessons with > > conventional teacher - don't know how it will work as he needs to > > introduce more rewards and fun- difficult for non-ABA person to > > acquire.He does say that J's ability to read rythm from page - ta > > tati etc. - don;'t have a clue myself is at 8 yr old level - twice > > chron age. J has also made up tunes, can play with all fingers of r > > hand (when he wants) and chords simultaneously w left hand. How do > > you encourage this? Have you any experience of techniues for four yr > > old? > > > > Maths > > J seems to identify w numbers counts out loud to 100 since about 3, > > recognises series of numbers, multiples of ten, eleven, knows couple > > of times tables, knows some basic addition, etc., counting items > > always been strong, > > Reading > > single words at 6.5 yr old level- reads handwriting, incidental > > signs, books never seen before etc., can read music notes from > > flashcards > > We are keen to encourage music to motivate him, give him self- esteem, > > ability to stay on task and more important- enjoyment! > > Do you have any ideas? > > Any input welcome > > > > Rhona > > > > > Hello all, > > > > > > This is an update on (turned 6 in December). > > > > > > Chelation: we had 6 months on Buttar protocol TD-DMPS, slow, steady > > > gains. When I changed the protocol to low, frequent dosing, he went > > > to pieces. Same with DMSA oral low fequent dosing. Our hands are > > > fairly tied as far as riding out regressive behaviour is concerned > > > because school is not very tolerant of these glitches, and we are > > > hoping to phase out the shadow this year, both for his sake and > > > because the cost is beyond the joke. So no consistent chelation > > > since end August. > > > > > > > > > LDN: The last time I posted an update, I think, was after we had > > > started LDN at 1/5 of full dose and what we were seeing was > > nothing > > > short of miraculous - to the extent that I was convinced that this > > > was his 'magic bullet'. There was little to distinguish him from > > any > > > happy bright NT kid his age. This was, alas, a honeymoon period, > > but > > > worthwhile nonetheless as it provided a very welcome glimpse > > of 'the > > > other side'. > > > > > > We are now on LDN full dose on McC's recommendation and is > > > coming down with bronchitis on a regular basis. Just back on the > > > aerolin, again.Why this is interesting is because when he was a > > > baby, he was hospitalised for a month with acute bronchitis and had > > > a number of relapses after that, none of which was severe, however. > > > When he regressed at 2 yrs, his repsiratory tract problems vanished > > > and he was rarely unwell. Now they seem to be coming back, always > > > the same thing - mild bronchitis. It's almost as though his immune > > > system is picking up where it left off? > > > > > > > > > VALTREX: During the Christmas break, I started N on valtrex, > > because > > > of his obvious post chicken pox freefall into autism and his > > > repeated attacks of mouth ulcers [controlled by Lysine]. He has > > > no 'hard signs' per Kurtz. > > > > > > Ist 10 days: 2 x 500 mg - much calmer, happier, more talkative.More > > > with us. Here's an illustration: > > > loves the itunes programme, and makes his own > > compilations, > > > imports songs, and burns his own cd's etc. My mother asked him to > > > make her a Mp3, which he dutifully did. He brought it to me when it > > > was ready and said " Here's grandma's MP3. Put it in an envelope. " I > > > did and handed it to her. He intercepted it and said " Can I give it > > > to grandma, Mummy? " Ahhhh. > > > He had a big regression when we went up to full dose - 3 x 250 - > > > started wandering around with his tongue hanging out, very vacant- > > > looking and irascible, stimming on videos. > > > This only lasted 3 days, thankfully. > > > > > > Back to school and wonderful - independent, responsive, doing all > > > his work without excessive prodding. School has agreed to do > > without > > > shadow 1x per week and we'll take it from there.He's had four such > > > days and he's been fine and so has his teacher. And when his shadow > > > is at school, she is rarely needed. They are putting him into a > > > higher year for maths - this had always been mooted but the > > teachers > > > in question were resistant. Now we have a volunteer! He no longer > > > tries to bolt at playtime and his piano teacher is very pleased > > > with his progress and says it's amazing to see a child that age > > able > > > to play and sing at the same time, because young kids can't focus > > on > > > both activities simultaneously. > > > > > > He is opening up to the other kids much more - playing snakes and > > > ladders - ball games etc, and even got annoyed when he didn't get a > > > response out of a boy he greeted. Slight improvement re eye > > contact - > > > always a BIG problem. Made a Valentine's card unprompted for a > > > little girl in his class this morning. Makes up jokes, puns etc. > > > alternate lyrics to songs, eg. REM's 'Wake up bomb' goes form > > > saying 'I look good in a glass pack' to 'I look good in the > > > sandpit'!! Lots of happiness coming through, lots of overtures to > > > play, read to and sing with him. Even made cookies together > > > yesterday. > > > > > > Another change is that I have reduced his billion supplements to > > > basic vitamins, b12 shots, minerals, amino acids, and fish oils > > with > > > no problems. Added Houston Enzymes about 6 weeks ago - had been > > > using Kirkman prior to that. > > > > > > > > > We had a livid red rash on the front of the knee last week - > > exactly > > > like the 2nd degree burn type rashes that we experienced when we > > > started td-dmps. ????? detox??? > > > > > > All in all we are very optimisitc at this point. Of course, in my > > > usual scientific way, I can't tell whether it's the valtrex or the > > > LDN or a combination of the two that is doing this! > > > > > > We'll be starting the nasal spray when our shots run out, and keep > > > you posted. We are also seeing Dr Heard for the first time on March > > > 8th. > > > > > > Also we're having his annual WISC assesment doen this week - if > > he's > > > well enough - and will post results in terms of progress from this > > > time last year. > > > > > > Slightly unsure how to proceed chelation wise. Lead, more than > > > mercury being the problem. > > > > > > > > > Anne-Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Rhona, did your GP prescribe the Vancomycin? Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 >Hi Margaret Yes he did!. He is literally one GP in a million- can't rave enough about him. He comes to our house over his lunch break to take 's blood samples, rather than have the ordeal of going to the surgery, has supported applications to the PCT, is interested in the Biomedical side,etc., - Almost unbelievable, I know, but true!! Rhona > Rhona, did your GP prescribe the Vancomycin? > Margaret > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Wow, your doctor sounds wonderful. Where is he ?? Re: Updates >Hi Margaret Yes he did!. He is literally one GP in a million- can't rave enough about him. He comes to our house over his lunch break to take 's blood samples, rather than have the ordeal of going to the surgery, has supported applications to the PCT, is interested in the Biomedical side,etc., - Almost unbelievable, I know, but true!!Rhona > Rhona, did your GP prescribe the Vancomycin?> Margaret> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 > >Hi Margaret > > Yes he did!. He is literally one GP in a million- can't rave enough > about him. He comes to our house over his lunch break to take 's > blood samples, rather than have the ordeal of going to the surgery, has > supported applications to the PCT, is interested in the Biomedical > side,etc., - Almost unbelievable, I know, but true!! > Rhona > > Rhona, did your GP prescribe the Vancomycin? > > Margaret > > > > > > > > > > DISCLAIMER > No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 There's much too much time wasted cloning sheep, someone clone this doctor and fast! > > Hello all, > > This is an update on (turned 6 in December). > > Chelation: we had 6 months on Buttar protocol TD-DMPS, slow, steady > gains. When I changed the protocol to low, frequent dosing, he went > to pieces. Same with DMSA oral low fequent dosing. Our hands are > fairly tied as far as riding out regressive behaviour is concerned > because school is not very tolerant of these glitches, and we are > hoping to phase out the shadow this year, both for his sake and > because the cost is beyond the joke. So no consistent chelation > since end August. > > > LDN: The last time I posted an update, I think, was after we had > started LDN at 1/5 of full dose and what we were seeing was nothing > short of miraculous - to the extent that I was convinced that this > was his 'magic bullet'. There was little to distinguish him from any > happy bright NT kid his age. This was, alas, a honeymoon period, but > worthwhile nonetheless as it provided a very welcome glimpse of 'the > other side'. > > We are now on LDN full dose on McC's recommendation and is > coming down with bronchitis on a regular basis. Just back on the > aerolin, again.Why this is interesting is because when he was a > baby, he was hospitalised for a month with acute bronchitis and had > a number of relapses after that, none of which was severe, however. > When he regressed at 2 yrs, his repsiratory tract problems vanished > and he was rarely unwell. Now they seem to be coming back, always > the same thing - mild bronchitis. It's almost as though his immune > system is picking up where it left off? > > > VALTREX: During the Christmas break, I started N on valtrex, because > of his obvious post chicken pox freefall into autism and his > repeated attacks of mouth ulcers [controlled by Lysine]. He has > no 'hard signs' per Kurtz. > > Ist 10 days: 2 x 500 mg - much calmer, happier, more talkative.More > with us. Here's an illustration: > loves the itunes programme, and makes his own compilations, > imports songs, and burns his own cd's etc. My mother asked him to > make her a Mp3, which he dutifully did. He brought it to me when it > was ready and said " Here's grandma's MP3. Put it in an envelope. " I > did and handed it to her. He intercepted it and said " Can I give it > to grandma, Mummy? " Ahhhh. > He had a big regression when we went up to full dose - 3 x 250 - > started wandering around with his tongue hanging out, very vacant- > looking and irascible, stimming on videos. > This only lasted 3 days, thankfully. > > Back to school and wonderful - independent, responsive, doing all > his work without excessive prodding. School has agreed to do without > shadow 1x per week and we'll take it from there.He's had four such > days and he's been fine and so has his teacher. And when his shadow > is at school, she is rarely needed. They are putting him into a > higher year for maths - this had always been mooted but the teachers > in question were resistant. Now we have a volunteer! He no longer > tries to bolt at playtime and his piano teacher is very pleased > with his progress and says it's amazing to see a child that age able > to play and sing at the same time, because young kids can't focus on > both activities simultaneously. > > He is opening up to the other kids much more - playing snakes and > ladders - ball games etc, and even got annoyed when he didn't get a > response out of a boy he greeted. Slight improvement re eye contact - > always a BIG problem. Made a Valentine's card unprompted for a > little girl in his class this morning. Makes up jokes, puns etc. > alternate lyrics to songs, eg. REM's 'Wake up bomb' goes form > saying 'I look good in a glass pack' to 'I look good in the > sandpit'!! Lots of happiness coming through, lots of overtures to > play, read to and sing with him. Even made cookies together > yesterday. > > Another change is that I have reduced his billion supplements to > basic vitamins, b12 shots, minerals, amino acids, and fish oils with > no problems. Added Houston Enzymes about 6 weeks ago - had been > using Kirkman prior to that. > > > We had a livid red rash on the front of the knee last week - exactly > like the 2nd degree burn type rashes that we experienced when we > started td-dmps. ????? detox??? > > All in all we are very optimisitc at this point. Of course, in my > usual scientific way, I can't tell whether it's the valtrex or the > LDN or a combination of the two that is doing this! > > We'll be starting the nasal spray when our shots run out, and keep > you posted. We are also seeing Dr Heard for the first time on March > 8th. > > Also we're having his annual WISC assesment doen this week - if he's > well enough - and will post results in terms of progress from this > time last year. > > Slightly unsure how to proceed chelation wise. Lead, more than > mercury being the problem. > > > Anne-Marie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Could he be the next UK Dan! Dr ? Re: Updates > >Hi Margaret > > Yes he did!. He is literally one GP in a million- can't rave enough > about him. He comes to our house over his lunch break to take 's > blood samples, rather than have the ordeal of going to the surgery, has > supported applications to the PCT, is interested in the Biomedical > side,etc., - Almost unbelievable, I know, but true!!> Rhona > > Rhona, did your GP prescribe the Vancomycin?> > Margaret> >> > > > > > > > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 HI Karin, Thanks for the updates. Can you expound on the 'situation' or is that confidential? Was that a TPN? How did any one find out that there were two strengths of same drug in one bottle? one bottle of what? If this is confidential I do understand. If it is, then can you give us an example that did NOT happen that is similar. Perhaps two different drugs. Thanks so much Jeanetta karin h <hockeykatbird_27@...> wrote: I said I would update about which drug we carried, and here it is. we got rid one one of the products entirely and the product we now carry is Calcium Disodium Versenate (edetate calcium disodium) as for the root cause analasis i was in on, it was about how 2 different strengths of a drug got into the same bottle--and the issues resulting from that. " If the world were perfect, it wouldn't be. " - Yogi Berra ONLY AFTER YOU'VE LOST EVERYTHING ARE YOU FREE TO DO ANYTHING if you have the time to click on an e-mail link like this one: http://www.sendmoreinfo.com/ID/2425657 you really can earn some extra cash! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 it was trazodone 50mg and 100mg in the same bottle. some of it got cut in half to be prepacked to go onto the floor, and some was in the out patient part to go into someone's prescriptions. it got discovered when a nurse noticed that the halves were different sizes--like they didn't match different. so yeah te pre-pak got hecked by a pharmacist too! At some point an astute tech opened the bottle to count and noticed that the pilles were different sizes. the phone ringing (and need to answer) combined with the bell at the window (and needing to answer it) was deemed distraction enough to not notice the difference from the tech packing. no answer on why the pharmacist didn't notice, and no answer on how it got into the bottle in the first place. --- Jeanetta Mastron <rxjm2002@...> wrote: HI Karin, Thanks for the updates. Can you expound on the 'situation' or is that confidential? Was that a TPN? How did any one find out that there were two strengths of same drug in one bottle? one bottle of what? If this is confidential I do understand. If it is, then can you give us an example that did NOT happen that is similar. Perhaps two different drugs. Thanks so much Jeanetta > > karin h <hockeykatbird_27@...> wrote: > I said I would update about > which drug we carried, and > here it is. > we got rid one one of the products entirely and the > product we now carry is Calcium Disodium Versenate > (edetate calcium disodium) > > as for the root cause analasis i was in on, it was > about how 2 different strengths of a drug got into > the > same bottle--and the issues resulting from that. > > " If the world were perfect, it wouldn't be. " > - Yogi > Berra > > ONLY AFTER YOU'VE LOST EVERYTHING ARE YOU FREE TO > DO ANYTHING > > if you have the time to click on an e-mail link > like this one: > http://www.sendmoreinfo.com/ID/2425657 you really > can earn some extra cash! > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 Hi Debileni, My hep is autoimmune disease, so I'm no expert on Hep C. The moderator, LeighAnn, and the others in the group will help with all the nitty gritty. So sorry to hear of how the side affects are putting you down. Keep your chin up, I understand the misery doesn't last. Best Wishes, *^Annette Meisner ;~> ~~~~~ Re: Updates Hi Annette, I don't know where to begin ,I have hepc 1a,stage 3, and other chronic blood disorders. But at the moment my blood test are being retested,and retested. do to white blood ,platletslymphocytes,monocytes,hdl,vitamin d so low that i'm taking 50,000 (yikes) units perMONTH,and then the highs are my triglycerides AFP ,AST are up there.... does all this go with the hep c catagory:? I sure don't know ,am going Mon.march 5 for mri (mra) for stomach pain ,cuz ,i also have diviticlious, and cryofibrinogenemia... chronic blood disorder. but, besides that. on the blood test is that all do to the hep c... did you ever take any of the meds.. and what stage and type do you have to associate with.. sure isn't no fun.... i'm sick more and more and up on my feet. no fun..... gotta get myself back to myself.... thanks for any info and hopefully we'll be talking more.... thanks Annette,,, debileni... enjoy > -- In Hepatitis C , Annette Meisner <treeoflifebiblestudy@...> wrote: > > How is everyone's health? > Mine is still improving ... I have lotsa energy and jaundice seems to be gone. My last enzymes were in the 200's ... sure better than October's 1500's. We'll see what next week's tests bring. > > Have a great weekend everyone. > *^*^*^*^*^*^*^*^*^*^*^*^*^*^* > Annette Meisner ;~> > http://www.angelfire.com/or/TREEOFLIFE > Bible lessons > *^*^*^*^*^*^*^*^*^*^*^*^*^*^* ________________________________________________________________________________\ ____ Expecting? Get great news right away with email Auto-Check. Try the Beta. http://advision.webevents./mailbeta/newmail_tools.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 In a message dated 4/13/2007 2:58:57 PM Eastern Daylight Time, madideas@... writes: However, now, with 1-1 tutoring for all his classes, he is getting such wonderful grades! He is making all A's and B's in everything. He just got an A for Algebra 2. That is awesome news!!!! you should be proud JoanneSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 Roxanna, this is wonderful news. I am very glad to hear it. Pam :)See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 I really am proud of him. He doesn't do any homework nor does he study! He does all his work during his tutoring time. So he does all that from his head and not from actually "working" at it. Roxanna Re: ( ) Updates In a message dated 4/13/2007 2:58:57 PM Eastern Daylight Time, madideaszoominternet (DOT) net writes: However, now, with 1-1 tutoring for all his classes, he is getting such wonderful grades! He is making all A's and B's in everything. He just got an A for Algebra 2. That is awesome news!!!! you should be proud Joanne See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 Congratulations to you Roxanna, and Congratulations to your son. That is great news!!!! *smile*Roxanna <madideas@...> wrote: I want to apologize to everyone for some of the posts being marked "SPAM" in the titles. It's all my fault. I got a new protection program from McAfee and I have not figured out how to get it to stop marking every email I get as "SPAM." I've done all the logical things already and still, half the posts end up marked SPAM. I try to delete that before I send but I forget sometimes! It's been nice to have a lull in posts lately. I was able to catch up with all the mail and even have time to write some answers and posts to people. The person who was writing me hate mail over moderating another person said that their group had over 600 posts since the night before. I think this was supposed to make me feel bad but I am just relieved it's not on our list! I don't mind a lot of posts but it gets tedious if they are all from the same people and some not even related to AS. I know Pam and I work hard to keep things going on here and sometimes it is not always fun. But gosh, we've been here for so long I don't think we are allowed to leave anymore, are we? lol And now a moment of bragging since sometimes people want good news, I have some. My oldest ds is 18 (HFA, dyslexic) and as you may know, he doesn't attend regular school. He couldn't cope with dealing with all the people and the supports provided (what supports?) were not sufficient and not done in time to keep him at school. Therefore, he gets tutored by the school twice a week. He is taking all his classes and will have the credits to graduate this June just like everyone else. Well, he always struggles in school. He has problems hearing (capd issues still), problems reading (dyslexia) and then all the social problems (he is selectively mute) cause even more anxiety. His grades have always reflected his disabilities rather than abilities. However, now, with 1-1 tutoring for all his classes, he is getting such wonderful grades! He is making all A's and B's in everything. He just got an A for Algebra 2. I am so happy for him finding success in learning. So while I was very upset when he had to leave the school and it still upsets me that they did not work to keep him there, in the end, he is doing so much better. Finally he is getting grades that reflect what he knows. So it's a good thing, as Martha says! <GG> Roxanna Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 some not even related to AS. He is making all A's and B's in everything. He just got an A for Algebra 2. I am so happy for him finding success in learning. > Roxanna > WOW! How awesome! Good work to your son (and to Mom!) - Velvet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2007 Report Share Posted April 21, 2007 Congratulations for finding out what works for ds and for sticking with it. Not everyone learns in the same way. (Just how many times have I learned this lesson???)LizOn Apr 13, 2007, at 2:53 PM, Roxanna wrote:I want to apologize to everyone for some of the posts being marked "SPAM" in the titles. It's all my fault. I got a new protection program from McAfee and I have not figured out how to get it to stop marking every email I get as "SPAM." I've done all the logical things already and still, half the posts end up marked SPAM. I try to delete that before I send but I forget sometimes! It's been nice to have a lull in posts lately. I was able to catch up with all the mail and even have time to write some answers and posts to people. The person who was writing me hate mail over moderating another person said that their group had over 600 posts since the night before. I think this was supposed to make me feel bad but I am just relieved it's not on our list! I don't mind a lot of posts but it gets tedious if they are all from the same people and some not even related to AS.  I know Pam and I work hard to keep things going on here and sometimes it is not always fun. But gosh, we've been here for so long I don't think we are allowed to leave anymore, are we? lol And now a moment of bragging since sometimes people want good news, I have some. My oldest ds is 18 (HFA, dyslexic) and as you may know, he doesn't attend regular school. He couldn't cope with dealing with all the people and the supports provided (what supports?) were not sufficient and not done in time to keep him at school. Therefore, he gets tutored by the school twice a week. He is taking all his classes and will have the credits to graduate this June just like everyone else.  Well, he always struggles in school. He has problems hearing (capd issues still), problems reading (dyslexia) and then all the social problems (he is selectively mute) cause even more anxiety. His grades have always reflected his disabilities rather than abilities. However, now, with 1-1 tutoring for all his classes, he is getting such wonderful grades! He is making all A's and B's in everything. He just got an A for Algebra 2. I am so happy for him finding success in learning. So while I was very upset when he had to leave the school and it still upsets me that they did not work to keep him there, in the end, he is doing so much better. Finally he is getting grades that reflect what he knows. So it's a good thing, as Martha says! <GG> Roxanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 I am Karyn, mom to three boys ( 19 on Jan 5, 7, and r 3 1/2) and a girl (, 14mo.). My husband is Ken. We've been together 19 years and married for 13 years. is my reason for being on the list. He has down syndrome along with autism, ADHD, artificial mitral valve, hypothyroid, misc. other medical issues, and some mental health issues. came to us at age 8 and has issues due to early abuse and neglect. requires one on one support but is a really fun guy. He loves rock and roll, sledding, playing practical jokes, snuggling his sister for as long as she will allow, swinging, and swimming. His favorite staff are female, young, and blonde. LOL!! His bachelor uncle is very jealous. He is currently residing in a supported living arrangement with one house mate. He was in a group home before that but that came to a screeching halt one day last spring. I have a lot of anger about the group home situation that I'm having a hard time letting go of but working on it. 's current arrangement is working fairly well. He moved in there the end of August so it is still new. They are struggling with staff shortages still and can't seem to get a full team in place. is doing very well in school and is working at a vocational site a few hours a week with school staff and hopefully transition there as his school career comes to a close. He spent time there this summer with limited success but hopefully the school support will give them the support to help be successful. The rest of the family is doing well. As some may remember had feeding issues as an infant and was a late talker. He is now a great first grader who makes sure we all follow the(his) rules. r was also a late talker and is diagnosed with profound phonological disorder (I think it is more apraxia) and attends preschool class taught by a very good SLP who works well with him. He is my shy guy. is very busy keeping up with her brothers. She already knows how to make a tinker toy into a gun and make shooting sounds. ARGGGG!!!!!!!!!!! She also loves cuddling her baby dolls and snuggling. OK, There is my not so short update. hope all are doing well. I don't post much but enjoy hearing all the successes of the kids and keeping track of how everyone is growing up. Karyn (Wisconsin) **************************************See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Send a letter to the doctor asking him or her is you can start some kind of massage therapy..Not sure of Insurance but some companys do pay for part of it. You can also massage your arms and legs if the doctor says yes. You can use lotion and see if this helps..stroke toward the heart ...ask first ask ask and give MD either your address or phone number, they will get back to you...I am annoyed how difficult it is in contacting doctors. They act like they did not get call...so write..receipt requested..ha hha ha or that kind of mail they have to sign for..they;ll get back to you that's my plan hugs Liz **************Vote for your city's best dining and nightlife. City's Best 2008. (http://citysbest.aol.com?ncid=aolacg00050000000102) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 In a message dated 6/12/2008 3:24:48 P.M. Eastern Daylight Time, stills_stinks@... writes: a frog is in the mouth of a bird yet the frog has the bird by the throat and is trying to strangle the bird that caption is never give up . for us with stills how true is that because if we give up no one will fight for us so never ever give up and keep at it . just substitute " dragon " for " frog " and that's me!!!! Thanks Marty. Carole in Hollywood FL **************Vote for your city's best dining and nightlife. City's Best 2008. (http://citysbest.aol.com?ncid=aolacg00050000000102) Quote Link to comment Share on other sites More sharing options...
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