Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Is immunovir an injection or an antiviral? I don't think I've heard of that one. Barb Katsaros barbkatsaros@... From: thefamily007 <donnaaron@...> Subject: IMGG and Immunovir Date: Wednesday, December 17, 2008, 12:55 AM Hello, listmates, I'm curious as to how the kiddos who have had IMGG and Immunovir have responded to them. My son has been getting IMGG shots every three weeks to treat low NK cells and a low white count. He had his fifth injection last Thursday. Each time, he seems " off " for a few days, and then we start to notice some incremental improvements, but nothing huge. Then, in the week before the next injection, he starts to lose his " edge " , for lack of a better way to put it. He's " on " for a couple of weeks, and then he's " off " for a week. It's disappointing, to say the least, because the improvements (at least in terms of behavior and cognitive functioning) don't seem to last, and the IMGG shots won't go on forever. I haven't heard yet if the last blood work-up yielded any improved NK or white cell results. If IMGg doesn't do the trick, we will bite the bullet and spend the $$ on Immunivir. To those with kids on Immunivir -- how are they doing? What improvements, if any, are you seeing? And are they lasting? TIA, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 It's an immune modulator, currently being used with some success in CFIDS patients, specifically addressing NK issues. It's made in Ireland and is currently not available in the U.S. because of political, not safety, reasons. (Insert " rolling eyes " emoticon here!) U.S. patients have to purchase it from Canadian pharmacies, and it's expensive. Dr. G suggested that we try it a while back, but we opted to try IMGG first because our insurance will cover it. > From: thefamily007 <donnaaron@...> > Subject: IMGG and Immunovir > > Date: Wednesday, December 17, 2008, 12:55 AM > > > > > > > > > > > > Hello, listmates, > > > > I'm curious as to how the kiddos who have had IMGG and Immunovir have > > responded to them. > > > > My son has been getting IMGG shots every three weeks to treat low NK > > cells and a low white count. He had his fifth injection last > > Thursday. Each time, he seems " off " for a few days, and then we start > > to notice some incremental improvements, but nothing huge. Then, in > > the week before the next injection, he starts to lose his " edge " , for > > lack of a better way to put it. He's " on " for a couple of weeks, and > > then he's " off " for a week. It's disappointing, to say the least, > > because the improvements (at least in terms of behavior and cognitive > > functioning) don't seem to last, and the IMGG shots won't go on forever. > > > > I haven't heard yet if the last blood work-up yielded any improved NK > > or white cell results. If IMGg doesn't do the trick, we will bite the > > bullet and spend the $$ on Immunivir. > > > > To those with kids on Immunivir -- how are they doing? What > > improvements, if any, are you seeing? And are they lasting? > > > > TIA, > > > > Donna > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Is it over the counter? Is that the one which is 250 a month or so? Anyone know what is in it or how it works? Barb Katsaros barbkatsaros@... From: thefamily007 <donnaaron@...> Subject: Re: IMGG and Immunovir Date: Wednesday, December 17, 2008, 1:16 AM It's an immune modulator, currently being used with some success in CFIDS patients, specifically addressing NK issues. It's made in Ireland and is currently not available in the U.S. because of political, not safety, reasons. (Insert " rolling eyes " emoticon here!) U.S. patients have to purchase it from Canadian pharmacies, and it's expensive. Dr. G suggested that we try it a while back, but we opted to try IMGG first because our insurance will cover it. > From: thefamily007 <donnaaron@. ..> > Subject: IMGG and Immunovir > groups (DOT) com > Date: Wednesday, December 17, 2008, 12:55 AM > > > > > > > > > > > > Hello, listmates, > > > > I'm curious as to how the kiddos who have had IMGG and Immunovir have > > responded to them. > > > > My son has been getting IMGG shots every three weeks to treat low NK > > cells and a low white count. He had his fifth injection last > > Thursday. Each time, he seems " off " for a few days, and then we start > > to notice some incremental improvements, but nothing huge. Then, in > > the week before the next injection, he starts to lose his " edge " , for > > lack of a better way to put it. He's " on " for a couple of weeks, and > > then he's " off " for a week. It's disappointing, to say the least, > > because the improvements (at least in terms of behavior and cognitive > > functioning) don't seem to last, and the IMGG shots won't go on forever. > > > > I haven't heard yet if the last blood work-up yielded any improved NK > > or white cell results. If IMGg doesn't do the trick, we will bite the > > bullet and spend the $$ on Immunivir. > > > > To those with kids on Immunivir -- how are they doing? What > > improvements, if any, are you seeing? And are they lasting? > > > > TIA, > > > > Donna > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 It's Isoprinosine and yes, it's expensive and you have to order it outside of the US as it's not available here. Cheryl ~Check out my blog: http://www.gryffins-tail.blogspot.com/ On Dec 17, 2008, at 7:24 AM, Barb Katsaros wrote: > Is it over the counter? Is that the one which is 250 a month or > so? Anyone know what is in it or how it works? > > Barb Katsaros > > barbkatsaros@... > > > From: thefamily007 <donnaaron@...> > Subject: Re: IMGG and Immunovir > > Date: Wednesday, December 17, 2008, 1:16 AM > > > > > > > > > > > > It's an immune modulator, currently being used with > some success in > > CFIDS patients, specifically addressing NK issues. It's made in > > Ireland and is currently not available in the U.S. because of > > political, not safety, reasons. (Insert " rolling eyes " emoticon here!) > > U.S. patients have to purchase it from Canadian pharmacies, and it's > > expensive. Dr. G suggested that we try it a while back, but we opted > > to try IMGG first because our insurance will cover it. > > > > > >> From: thefamily007 <donnaaron@. ..> > >> Subject: IMGG and Immunovir > >> groups (DOT) com > >> Date: Wednesday, December 17, 2008, 12:55 AM > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Hello, listmates, > >> > >> > >> > >> I'm curious as to how the kiddos who have had IMGG and Immunovir have > >> > >> responded to them. > >> > >> > >> > >> My son has been getting IMGG shots every three weeks to treat low NK > >> > >> cells and a low white count. He had his fifth injection last > >> > >> Thursday. Each time, he seems " off " for a few days, and then we >> start > >> > >> to notice some incremental improvements, but nothing huge. Then, in > >> > >> the week before the next injection, he starts to lose his " edge " , for > >> > >> lack of a better way to put it. He's " on " for a couple of weeks, and > >> > >> then he's " off " for a week. It's disappointing, to say the least, > >> > >> because the improvements (at least in terms of behavior and cognitive > >> > >> functioning) don't seem to last, and the IMGG shots won't go on > > forever. > >> > >> > >> > >> I haven't heard yet if the last blood work-up yielded any improved NK > >> > >> or white cell results. If IMGg doesn't do the trick, we will bite >> the > >> > >> bullet and spend the $$ on Immunivir. > >> > >> > >> > >> To those with kids on Immunivir -- how are they doing? What > >> > >> improvements, if any, are you seeing? And are they lasting? > >> > >> > >> > >> TIA, > >> > >> > >> > >> Donna > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Why dont he aprove of IVIG?? A lot of SDS kids are on it! Sent on the Now Network™ from my Sprint® BlackBerry Re: IMGG and Immunovir We saw nothing with the IMGG shots and we did it for almost a year (I think, give or take a month or two). I actually asked Dr. G once if we should move on to IVIG and since he doesn't approve of it, he said no (I wasn't surprised but had to ask). Cheryl ~Check out my blog: http://www.gryffins-tail.blogspot.com/ On Dec 16, 2008, at 10:55 PM, thefamily007 wrote: > Hello, listmates, > > I'm curious as to how the kiddos who have had IMGG and Immunovir have > responded to them. > > My son has been getting IMGG shots every three weeks to treat low NK > cells and a low white count. He had his fifth injection last > Thursday. Each time, he seems " off " for a few days, and then we start > to notice some incremental improvements, but nothing huge. Then, in > the week before the next injection, he starts to lose his " edge " , for > lack of a better way to put it. He's " on " for a couple of weeks, and > then he's " off " for a week. It's disappointing, to say the least, > because the improvements (at least in terms of behavior and cognitive > functioning) don't seem to last, and the IMGG shots won't go on > forever. > > I haven't heard yet if the last blood work-up yielded any improved NK > or white cell results. If IMGg doesn't do the trick, we will bite the > bullet and spend the $$ on Immunivir. > > To those with kids on Immunivir -- how are they doing? What > improvements, if any, are you seeing? And are they lasting? > > TIA, > > Donna > > > ------------------------------------ > > Responsibility for the content of this message lies strictly with > the original author(s), and is not necessarily endorsed by or the > opinion of the Research Institute, the Parent Coalition, > or the list moderator(s). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 We saw nothing with the IMGG shots and we did it for almost a year (I think, give or take a month or two). I actually asked Dr. G once if we should move on to IVIG and since he doesn't approve of it, he said no (I wasn't surprised but had to ask). Cheryl ~Check out my blog: http://www.gryffins-tail.blogspot.com/ On Dec 16, 2008, at 10:55 PM, thefamily007 wrote: > Hello, listmates, > > I'm curious as to how the kiddos who have had IMGG and Immunovir have > responded to them. > > My son has been getting IMGG shots every three weeks to treat low NK > cells and a low white count. He had his fifth injection last > Thursday. Each time, he seems " off " for a few days, and then we start > to notice some incremental improvements, but nothing huge. Then, in > the week before the next injection, he starts to lose his " edge " , for > lack of a better way to put it. He's " on " for a couple of weeks, and > then he's " off " for a week. It's disappointing, to say the least, > because the improvements (at least in terms of behavior and cognitive > functioning) don't seem to last, and the IMGG shots won't go on > forever. > > I haven't heard yet if the last blood work-up yielded any improved NK > or white cell results. If IMGg doesn't do the trick, we will bite the > bullet and spend the $$ on Immunivir. > > To those with kids on Immunivir -- how are they doing? What > improvements, if any, are you seeing? And are they lasting? > > TIA, > > Donna > > > ------------------------------------ > > Responsibility for the content of this message lies strictly with > the original author(s), and is not necessarily endorsed by or the > opinion of the Research Institute, the Parent Coalition, > or the list moderator(s). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 My child is on immunovir, he is doing really well, we have been on it for about 6 months now. He is definately becoming healthier.....not falling to pieces when he does become ill. I buy it from a pharmacy in Canada. We also did IVIG for 10 mons. I would not do it again. He would get really out of whack, and vomit, headaches for days...etc...I would definately spend the money on immunovir.... Sincerely Noel From: thefamily007 <donnaaron@...> Subject: IMGG and Immunovir Date: Tuesday, December 16, 2008, 10:55 PM Hello, listmates, I'm curious as to how the kiddos who have had IMGG and Immunovir have responded to them. My son has been getting IMGG shots every three weeks to treat low NK cells and a low white count. He had his fifth injection last Thursday. Each time, he seems " off " for a few days, and then we start to notice some incremental improvements, but nothing huge. Then, in the week before the next injection, he starts to lose his " edge " , for lack of a better way to put it. He's " on " for a couple of weeks, and then he's " off " for a week. It's disappointing, to say the least, because the improvements (at least in terms of behavior and cognitive functioning) don't seem to last, and the IMGG shots won't go on forever. I haven't heard yet if the last blood work-up yielded any improved NK or white cell results. If IMGg doesn't do the trick, we will bite the bullet and spend the $$ on Immunivir. To those with kids on Immunivir -- how are they doing? What improvements, if any, are you seeing? And are they lasting? TIA, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 My son is 5 1/2 years and we have been with Dr. G for about 2 years. While he is making some improvements, we still do not have language! It's very concerning to us and we are wondering if we should look at alternatives such as sign language or something as a means for communication. Has anyone had a similar experience? We are getting desparate. Thanks for your input. > Hello, listmates, > > I'm curious as to how the kiddos who have had IMGG and Immunovir have > responded to them. > > My son has been getting IMGG shots every three weeks to treat low NK > cells and a low white count. He had his fifth injection last > Thursday. Each time, he seems " off " for a few days, and then we start > to notice some incremental improvements, but nothing huge. Then, in > the week before the next injection, he starts to lose his " edge " , for > lack of a better way to put it. He's " on " for a couple of weeks, and > then he's " off " for a week. It's disappointing, to say the least, > because the improvements (at least in terms of behavior and cognitive > functioning) don't seem to last, and the IMGG shots won't go on > forever. > > I haven't heard yet if the last blood work-up yielded any improved NK > or white cell results. If IMGg doesn't do the trick, we will bite the > bullet and spend the $$ on Immunivir. > > To those with kids on Immunivir -- how are they doing? What > improvements, if any, are you seeing? And are they lasting? > > TIA, > > Donna > > > ------------ --------- --------- ------ > > Responsibility for the content of this message lies strictly with > the original author(s), and is not necessarily endorsed by or the > opinion of the Research Institute, the Parent Coalition, > or the list moderator(s) . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Hi . My son did not put two words together until he could read. Doctor Goldberg often recommends seeing Dr. Margaret Fosnot in Woodland Hills, CA for speech. We saw her when my son was five. She was a great resource. Other resources are from speech and development companies such as Super Duper Inc., Linquisystems, and Great Ideas for Teaching. Most kids on the spectrum are strong visual learners and if you get the catalogs from these companies, you could find products either by CD programs or others that will be able to help your son. With my son, I had to read up on behavioral therapy from books from Shira Richman and others to help motivate him. Shira Richman has a book called a Parents Guide to Behavioral Analysis (it sounds worse than it is), it would be very helpful for any typical child also. It is easy to read and makes a lot of sense. My son has improved a lot, but it hasn't been easy and we have a long way to go. So possibly, be ready to devote a lot of time over the years to either doing therapy yourself outside of school or hiring someone if you can. Also, if you have any kids in your neighborhood who can play with him, that will help too. Because your son is so young, there is much time for improvement. Good luck. I hope this helped. Lynn On Wed, 12/17/08, Curtis and Hackler <thehacks@...> wrote: From: Curtis and Hackler <thehacks@...> Subject: Re: IMGG and Immunovir Date: Wednesday, December 17, 2008, 4:42 PM My son is 5 1/2 years and we have been with Dr. G for about 2 years. While he is making some improvements, we still do not have language! It's very concerning to us and we are wondering if we should look at alternatives such as sign language or something as a means for communication. Has anyone had a similar experience? We are getting desparate. Thanks for your input. > Hello, listmates, > > I'm curious as to how the kiddos who have had IMGG and Immunovir have > responded to them. > > My son has been getting IMGG shots every three weeks to treat low NK > cells and a low white count. He had his fifth injection last > Thursday. Each time, he seems " off " for a few days, and then we start > to notice some incremental improvements, but nothing huge. Then, in > the week before the next injection, he starts to lose his " edge " , for > lack of a better way to put it. He's " on " for a couple of weeks, and > then he's " off " for a week. It's disappointing, to say the least, > because the improvements (at least in terms of behavior and cognitive > functioning) don't seem to last, and the IMGG shots won't go on > forever. > > I haven't heard yet if the last blood work-up yielded any improved NK > or white cell results. If IMGg doesn't do the trick, we will bite the > bullet and spend the $$ on Immunivir. > > To those with kids on Immunivir -- how are they doing? What > improvements, if any, are you seeing? And are they lasting? > > TIA, > > Donna > > > ------------ --------- --------- ------ > > Responsibility for the content of this message lies strictly with > the original author(s), and is not necessarily endorsed by or the > opinion of the Research Institute, the Parent Coalition, > or the list moderator(s) . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 I have heard that signing is a good transition before speech improves. It also lessens their frustration of not being able to communicate. Barb Katsaros barbkatsaros@... > Hello, listmates, > > I'm curious as to how the kiddos who have had IMGG and Immunovir have > responded to them. > > My son has been getting IMGG shots every three weeks to treat low NK > cells and a low white count. He had his fifth injection last > Thursday. Each time, he seems " off " for a few days, and then we start > to notice some incremental improvements, but nothing huge. Then, in > the week before the next injection, he starts to lose his " edge " , for > lack of a better way to put it. He's " on " for a couple of weeks, and > then he's " off " for a week. It's disappointing, to say the least, > because the improvements (at least in terms of behavior and cognitive > functioning) don't seem to last, and the IMGG shots won't go on > forever. > > I haven't heard yet if the last blood work-up yielded any improved NK > or white cell results. If IMGg doesn't do the trick, we will bite the > bullet and spend the $$ on Immunivir. > > To those with kids on Immunivir -- how are they doing? What > improvements, if any, are you seeing? And are they lasting? > > TIA, > > Donna > > > ------------ --------- --------- ------ > > Responsibility for the content of this message lies strictly with > the original author(s), and is not necessarily endorsed by or the > opinion of the Research Institute, the Parent Coalition, > or the list moderator(s) . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Does anyone know of any good programs to teach sign to kids on the spectrum? We've used some sign with Noah and it does help to get him started when answering a question. With the switch to Famvir, we're seeing more expressive language but he is still severely delayed. We've tried PECS but he stops verbalizing completely when we use it. I would definitely be interested in pursuing sign language with him. Robyn > > > > > Hello, listmates, > > > > > > I'm curious as to how the kiddos who have had IMGG > and Immunovir have > > > responded to them. > > > > > > My son has been getting IMGG shots every three weeks > to treat low NK > > > cells and a low white count. He had his fifth > injection last > > > Thursday. Each time, he seems " off " for a > few days, and then we start > > > to notice some incremental improvements, but nothing > huge. Then, in > > > the week before the next injection, he starts to lose > his " edge " , for > > > lack of a better way to put it. He's > " on " for a couple of weeks, and > > > then he's " off " for a week. It's > disappointing, to say the least, > > > because the improvements (at least in terms of > behavior and cognitive > > > functioning) don't seem to last, and the IMGG > shots won't go on > > > forever. > > > > > > I haven't heard yet if the last blood work-up > yielded any improved NK > > > or white cell results. If IMGg doesn't do the > trick, we will bite the > > > bullet and spend the $$ on Immunivir. > > > > > > To those with kids on Immunivir -- how are they doing? > What > > > improvements, if any, are you seeing? And are they > lasting? > > > > > > TIA, > > > > > > Donna > > > > > > > > > ------------ --------- --------- ------ > > > > > > Responsibility for the content of this message lies > strictly with > > > the original author(s), and is not necessarily > endorsed by or the > > > opinion of the Research Institute, the > Parent Coalition, > > > or the list moderator(s) . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Your child sounds nonverbal? An awesome method beyond PECS is the Rapid Prompting Method by Halo. Sincerely, L. Juarez, PhD Candidate, M.S., Marriage and Family Therapist On Thu, Dec 18, 2008 at 9:48 AM, Robyn & Greg Coggins wrote: Does anyone know of any good programs to teach sign to kids on the spectrum? We've used some sign with Noah and it does help to get him started when answering a question. With the switch to Famvir, we're seeing more expressive language but he is still severely delayed. We've tried PECS but he stops verbalizing completely when we use it. I would definitely be interested in pursuing sign language with him. Robyn > > >> Hello, listmates, > >> > >> I'm curious as to how the kiddos who have had IMGG > and Immunovir have >> responded to them. > >> > >> My son has been getting IMGG shots every three weeks > to treat low NK >> cells and a low white count. He had his fifth > injection last >> Thursday. Each time, he seems " off " for a > few days, and then we start >> to notice some incremental improvements, but nothing > huge. Then, in >> the week before the next injection, he starts to lose > his " edge " , for >> lack of a better way to put it. He's > " on " for a couple of weeks, and >> then he's " off " for a week. It's > disappointing, to say the least, >> because the improvements (at least in terms of > behavior and cognitive >> functioning) don't seem to last, and the IMGG > shots won't go on >> forever. > >> > >> I haven't heard yet if the last blood work-up > yielded any improved NK >> or white cell results. If IMGg doesn't do the > trick, we will bite the >> bullet and spend the $$ on Immunivir. > >> > >> To those with kids on Immunivir -- how are they doing? > What >> improvements, if any, are you seeing? And are they > lasting? >> > >> TIA, > >> > >> Donna > >> > >> > >> ------------ --------- --------- ------ > >> > >> Responsibility for the content of this message lies > strictly with >> the original author(s), and is not necessarily > endorsed by or the >> opinion of the Research Institute, the > Parent Coalition, >> or the list moderator(s) . > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Noah has limited verbal skills, but we've seen a remarkable improvement in the last few months. He is seeking out language-based activities more often and he's blossoming socially. His actual expressive language is still very much geared to wants and needs. Thanks for the input on the Rapid Prompting Method. I'll look into it. What has been your experience with teaching kids such as Noah to learn sign language? If so, what professional (SLP, I'm assuming) would be the most appropriate to teach him. Thanks! Robyn > > > > > >> Hello, listmates, > > > >> > > > >> I'm curious as to how the kiddos who have had > IMGG > > and Immunovir have > >> responded to them. > > > >> > > > >> My son has been getting IMGG shots every three > weeks > > to treat low NK > >> cells and a low white count. He had his fifth > > injection last > >> Thursday. Each time, he seems " off " for > a > > few days, and then we start > >> to notice some incremental improvements, but > nothing > > huge. Then, in > >> the week before the next injection, he starts to > lose > > his " edge " , for > >> lack of a better way to put it. He's > > " on " for a couple of weeks, and > >> then he's " off " for a week. It's > > disappointing, to say the least, > >> because the improvements (at least in terms of > > behavior and cognitive > >> functioning) don't seem to last, and the IMGG > > shots won't go on > >> forever. > > > >> > > > >> I haven't heard yet if the last blood work-up > > yielded any improved NK > >> or white cell results. If IMGg doesn't do the > > trick, we will bite the > >> bullet and spend the $$ on Immunivir. > > > >> > > > >> To those with kids on Immunivir -- how are they > doing? > > What > >> improvements, if any, are you seeing? And are they > > lasting? > >> > > > >> TIA, > > > >> > > > >> Donna > > > >> > > > >> > > > >> ------------ --------- --------- ------ > > > >> > > > >> Responsibility for the content of this message > lies > > strictly with > >> the original author(s), and is not necessarily > > endorsed by or the > >> opinion of the Research Institute, the > > Parent Coalition, > >> or the list moderator(s) . > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Anyone else with Immunovir experience to share? TIA, Donna > > From: thefamily007 <donnaaron@...> > Subject: IMGG and Immunovir > > Date: Tuesday, December 16, 2008, 10:55 PM > > > > > > > Hello, listmates, > > I'm curious as to how the kiddos who have had IMGG and Immunovir have > responded to them. > > My son has been getting IMGG shots every three weeks to treat low NK > cells and a low white count. He had his fifth injection last > Thursday. Each time, he seems " off " for a few days, and then we start > to notice some incremental improvements, but nothing huge. Then, in > the week before the next injection, he starts to lose his " edge " , for > lack of a better way to put it. He's " on " for a couple of weeks, and > then he's " off " for a week. It's disappointing, to say the least, > because the improvements (at least in terms of behavior and cognitive > functioning) don't seem to last, and the IMGG shots won't go on forever. > > I haven't heard yet if the last blood work-up yielded any improved NK > or white cell results. If IMGg doesn't do the trick, we will bite the > bullet and spend the $$ on Immunivir. > > To those with kids on Immunivir -- how are they doing? What > improvements, if any, are you seeing? And are they lasting? > > TIA, > > Donna > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Sorry I am taking so long to respond. Teaching sign language depends a lot on the child's motor skills. Are son can't do sign because of motor difficulties, but he can point and type. Not all SLP's are trained in sign and a lot of professionals are not recommending becauseof its not universal. If your son is language limited, PECS initially AND (I stress and) another mode of communication skills such as augmented device that isn't to complicated. My son actually types on my blackberry to communicate??? Sincerely, L. Juarez, PhD Candidate, M.S., Marriage and Family Therapist On Thu, Dec 18, 2008 at 11:56 AM, Robyn & Greg Coggins wrote: Noah has limited verbal skills, but we've seen a remarkable improvement in the last few months. He is seeking out language-based activities more often and he's blossoming socially. His actual expressive language is still very much geared to wants and needs. Thanks for the input on the Rapid Prompting Method. I'll look into it. What has been your experience with teaching kids such as Noah to learn sign language? If so, what professional (SLP, I'm assuming) would be the most appropriate to teach him. Thanks! Robyn >> >>> Hello, listmates, >> >>> >> >>> I'm curious as to how the kiddos who have had > IMGG >> and Immunovir have >>> responded to them. >> >>> >> >>> My son has been getting IMGG shots every three > weeks >> to treat low NK >>> cells and a low white count. He had his fifth >> injection last >>> Thursday. Each time, he seems " off " for > a >> few days, and then we start >>> to notice some incremental improvements, but > nothing >> huge. Then, in >>> the week before the next injection, he starts to > lose >> his " edge " , for >>> lack of a better way to put it. He's >> " on " for a couple of weeks, and >>> then he's " off " for a week. It's >> disappointing, to say the least, >>> because the improvements (at least in terms of >> behavior and cognitive >>> functioning) don't seem to last, and the IMGG >> shots won't go on >>> forever. >> >>> >> >>> I haven't heard yet if the last blood work-up >> yielded any improved NK >>> or white cell results. If IMGg doesn't do the >> trick, we will bite the >>> bullet and spend the $$ on Immunivir. >> >>> >> >>> To those with kids on Immunivir -- how are they > doing? >> What >>> improvements, if any, are you seeing? And are they >> lasting? >>> >> >>> TIA, >> >>> >> >>> Donna >> >>> >> >>> >> >>> ------------ --------- --------- ------ >> >>> >> >>> Responsibility for the content of this message > lies >> strictly with >>> the original author(s), and is not necessarily >> endorsed by or the >>> opinion of the Research Institute, the >> Parent Coalition, >>> or the list moderator(s) . >> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Thanks, . I took your advice and purchased the book on the Rapid Prompting Method. I also bought Tito's book. I was very impressed by Soma's approach to teaching her son and have reason to believe it may work for Noah. I experimented with asking him a question and writing the two answers on a piece of paper. Although he usually verbally responded with the last answer I said, he chose the correct answer 90% of the time. I also liked the idea of communicating with the Blackberry, mostly due to its portability and small keyboard. Did you use any type of formal program to teach your son to type? TIA, Robyn > >> > >>> Hello, listmates, > >> > >>> > >> > >>> I'm curious as to how the kiddos who have > had > > IMGG > >> and Immunovir have > >>> responded to them. > >> > >>> > >> > >>> My son has been getting IMGG shots every three > > weeks > >> to treat low NK > >>> cells and a low white count. He had his fifth > >> injection last > >>> Thursday. Each time, he seems " off " > for > > a > >> few days, and then we start > >>> to notice some incremental improvements, but > > nothing > >> huge. Then, in > >>> the week before the next injection, he starts > to > > lose > >> his " edge " , for > >>> lack of a better way to put it. He's > >> " on " for a couple of weeks, and > >>> then he's " off " for a week. > It's > >> disappointing, to say the least, > >>> because the improvements (at least in terms of > >> behavior and cognitive > >>> functioning) don't seem to last, and the > IMGG > >> shots won't go on > >>> forever. > >> > >>> > >> > >>> I haven't heard yet if the last blood > work-up > >> yielded any improved NK > >>> or white cell results. If IMGg doesn't do > the > >> trick, we will bite the > >>> bullet and spend the $$ on Immunivir. > >> > >>> > >> > >>> To those with kids on Immunivir -- how are > they > > doing? > >> What > >>> improvements, if any, are you seeing? And are > they > >> lasting? > >>> > >> > >>> TIA, > >> > >>> > >> > >>> Donna > >> > >>> > >> > >>> > >> > >>> ------------ --------- --------- ------ > >> > >>> > >> > >>> Responsibility for the content of this message > > lies > >> strictly with > >>> the original author(s), and is not necessarily > >> endorsed by or the > >>> opinion of the Research Institute, the > > >> Parent Coalition, > >>> or the list moderator(s) . > >> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 We have the BEST private speech therapist I have ever met both professionally and personally (it helps that our clinics are together under one roof). She uses a formal blend of developmental speech, FastForward, ABA, and moodbell with the keyboard right next to him after ever drill... I have seen the most growth recently though with the addition of RPM. As I am trained in ABA, I see how RPM is a superior adjunct because it is constantly RAPID just like their brains are. Offering them choices (like ABA) but with a fast pace and intellectual respect for the child keeps their interest and the learning process expedited. I am not sure where your located, as my clinic is Ontario, CA. You can visit our clinic or call me if you want to talk more about the RPM. I highly recommend Soma's DVD as well. Sincerely, L. Juarez, PhD Candidate, M.S., Marriage and Family Therapist On Tue, Jan 6, 2009 at 10:28 AM, Robyn & Greg Coggins wrote: Thanks, . I took your advice and purchased the book on the Rapid Prompting Method. I also bought Tito's book. I was very impressed by Soma's approach to teaching her son and have reason to believe it may work for Noah. I experimented with asking him a question and writing the two answers on a piece of paper. Although he usually verbally responded with the last answer I said, he chose the correct answer 90% of the time. I also liked the idea of communicating with the Blackberry, mostly due to its portability and small keyboard. Did you use any type of formal program to teach your son to type? TIA, Robyn >>>> Hello, listmates, >>> >>>> >>> >>>> I'm curious as to how the kiddos who have > had >> IMGG >>> and Immunovir have >>>> responded to them. >>> >>>> >>> >>>> My son has been getting IMGG shots every three >> weeks >>> to treat low NK >>>> cells and a low white count. He had his fifth >>> injection last >>>> Thursday. Each time, he seems " off " > for >> a >>> few days, and then we start >>>> to notice some incremental improvements, but >> nothing >>> huge. Then, in >>>> the week before the next injection, he starts > to >> lose >>> his " edge " , for >>>> lack of a better way to put it. He's >>> " on " for a couple of weeks, and >>>> then he's " off " for a week. > It's >>> disappointing, to say the least, >>>> because the improvements (at least in terms of >>> behavior and cognitive >>>> functioning) don't seem to last, and the > IMGG >>> shots won't go on >>>> forever. >>> >>>> >>> >>>> I haven't heard yet if the last blood > work-up >>> yielded any improved NK >>>> or white cell results. If IMGg doesn't do > the >>> trick, we will bite the >>>> bullet and spend the $$ on Immunivir. >>> >>>> >>> >>>> To those with kids on Immunivir -- how are > they >> doing? >>> What >>>> improvements, if any, are you seeing? And are > they >>> lasting? >>>> >>> >>>> TIA, >>> >>>> >>> >>>> Donna >>> >>>> >>> >>>> >>> >>>> ------------ --------- --------- ------ >>> >>>> >>> >>>> Responsibility for the content of this message >> lies >>> strictly with >>>> the original author(s), and is not necessarily >>> endorsed by or the >>>> opinion of the Research Institute, the > >>> Parent Coalition, >>>> or the list moderator(s) . >>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 What is the name of your clinic? We have no private speech therapists in Palmdale. Thanks! Robyn > >>>> Hello, listmates, > >>> > >>>> > >>> > >>>> I'm curious as to how the kiddos who > have > > had > >> IMGG > >>> and Immunovir have > >>>> responded to them. > >>> > >>>> > >>> > >>>> My son has been getting IMGG shots every > three > >> weeks > >>> to treat low NK > >>>> cells and a low white count. He had his > fifth > >>> injection last > >>>> Thursday. Each time, he seems > " off " > > for > >> a > >>> few days, and then we start > >>>> to notice some incremental improvements, > but > >> nothing > >>> huge. Then, in > >>>> the week before the next injection, he > starts > > to > >> lose > >>> his " edge " , for > >>>> lack of a better way to put it. He's > >>> " on " for a couple of weeks, and > >>>> then he's " off " for a week. > > It's > >>> disappointing, to say the least, > >>>> because the improvements (at least in > terms of > >>> behavior and cognitive > >>>> functioning) don't seem to last, and > the > > IMGG > >>> shots won't go on > >>>> forever. > >>> > >>>> > >>> > >>>> I haven't heard yet if the last blood > > work-up > >>> yielded any improved NK > >>>> or white cell results. If IMGg doesn't > do > > the > >>> trick, we will bite the > >>>> bullet and spend the $$ on Immunivir. > >>> > >>>> > >>> > >>>> To those with kids on Immunivir -- how are > > they > >> doing? > >>> What > >>>> improvements, if any, are you seeing? And > are > > they > >>> lasting? > >>>> > >>> > >>>> TIA, > >>> > >>>> > >>> > >>>> Donna > >>> > >>>> > >>> > >>>> > >>> > >>>> ------------ --------- --------- ------ > >>> > >>>> > >>> > >>>> Responsibility for the content of this > message > >> lies > >>> strictly with > >>>> the original author(s), and is not > necessarily > >>> endorsed by or the > >>>> opinion of the Research Institute, > the > > > >>> Parent Coalition, > >>>> or the list moderator(s) . > >>> > >>>> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.