Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 , I am with you hon! ~hugs~ I am a donor and if my parts are no longer usable when I die, then research can have me because I won't need this shell again!!! ~hugs again~ Rabecca - -- In Autism and Aspergers Treatment , Annie <annie@r...> wrote: > wrote: > > > > > What is HCV Annie? > > > > Thanks > > > > HCV is Hepatitis C Virus. It's an RNA virus I got in 1973 or so from > tainted blood. I didn't know I even had it till around '94 or '95, and > by then it had turned chronic. It's pretty much trashed my liver; I now > have cirrhosis, portal hypertension, hepatocellular carcinoma (had a > lesion removed last Oct.), and hepatic encephalopathy (my body is not > clearing toxins well so they are affecting my memory and thought > patterns). I'm on the national liver transplant list and have also been > approved for a live donor transplant (I have to find the donor). I feel > good most of the time, but I have to be careful around sick people > because I get colds & c at the drop of a hat, and I get really tired if I > overdo. I have a CT scan tomorrow to check on whether or not I've had a > recurrence of the cancer. > > All of you out there, if you have not checked the donor box at your DMV > or gotten the donor sticker on your drivers liscence, please please do > so. People like me depend on it. > > Annie, who loves ya annie@r... > -- > Love is a choice--not simply, or necessarily, a rational choice, but > rather a willingness to be present to others without pretense or guile. > -- Heyward (theologian) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Beth (now 16) didn’t start talking to people, but she would RUN as a toddler and young preschooler. In stories, etc. If she saw something (or sometimes just for fun), she’d take off! I ended up buying one of those harnesses…you know…the leash…the thing I always looked down at other parents for B.B. (before Beth)! Maralee >^..^< -----Original Message----- From: Anne [mailto:Lady_Anne76@...] Sent: Monday, November 29, 2004 9:04 AM To: Autism and Aspergers Treatment Subject: RE: Question I usually just hold tight to Cameron when we are out in public. He hates it sometimes that I won't let go of his hand, or that he has to sit in a shopping cart, but there's no other way to keep him safe. We're very lucky that we live out in the middle of nowhere and I don't have to worry about him going with someone when he's playing outside. Anne -- RE: Question Anne ,my 4 year old grandson ( who lives with me ) is just like that ; he never experienced separation anxiety . He will go with anyone . We live on the beach and Blayke will run up to total strangers and hug them saying “ I go you” After several months of work we finally have managed to get him to no longer run up and hug strangers though he INSISTS on greeting them all ! It is a bit scary .We have a walled courtyard which we gated this summer and we are in the process right now of walling the entire front of our property and installing a solid wood gate across the driveway entrance so that Blayke is safer . Does anyone have an AS kid who loves everyone? A kid who doesn't know what a stranger is? Cameron will go up to anyone and give them a hug or ask to be picked up. Yesterday morning he was watching tv and there was some character on and he said that was his friend. Everyone is his friend. Anyone else's kid like that? Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Beth (now 16) didn’t start talking to people, but she would RUN as a toddler and young preschooler. In stories, etc. If she saw something (or sometimes just for fun), she’d take off! I ended up buying one of those harnesses…you know…the leash…the thing I always looked down at other parents for B.B. (before Beth)! Maralee >^..^< -----Original Message----- From: Anne [mailto:Lady_Anne76@...] Sent: Monday, November 29, 2004 9:04 AM To: Autism and Aspergers Treatment Subject: RE: Question I usually just hold tight to Cameron when we are out in public. He hates it sometimes that I won't let go of his hand, or that he has to sit in a shopping cart, but there's no other way to keep him safe. We're very lucky that we live out in the middle of nowhere and I don't have to worry about him going with someone when he's playing outside. Anne -- RE: Question Anne ,my 4 year old grandson ( who lives with me ) is just like that ; he never experienced separation anxiety . He will go with anyone . We live on the beach and Blayke will run up to total strangers and hug them saying “ I go you” After several months of work we finally have managed to get him to no longer run up and hug strangers though he INSISTS on greeting them all ! It is a bit scary .We have a walled courtyard which we gated this summer and we are in the process right now of walling the entire front of our property and installing a solid wood gate across the driveway entrance so that Blayke is safer . Does anyone have an AS kid who loves everyone? A kid who doesn't know what a stranger is? Cameron will go up to anyone and give them a hug or ask to be picked up. Yesterday morning he was watching tv and there was some character on and he said that was his friend. Everyone is his friend. Anyone else's kid like that? Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Hey annie…I have a ct scan tomorrow too to be sure there is no recurrence of kidney cancer on my one remaining kidney. Don’t ya just love that drink stuff? UGH They call it “cheetah” here. It almost makes me ill! GAG I’ve done the donor thing on my license. J Best to you! Maralee >^..^< Re: question wrote: > > What is HCV Annie? > > Thanks > HCV is Hepatitis C Virus. It's an RNA virus I got in 1973 or so from tainted blood. I didn't know I even had it till around '94 or '95, and by then it had turned chronic. It's pretty much trashed my liver; I now have cirrhosis, portal hypertension, hepatocellular carcinoma (had a lesion removed last Oct.), and hepatic encephalopathy (my body is not clearing toxins well so they are affecting my memory and thought patterns). I'm on the national liver transplant list and have also been approved for a live donor transplant (I have to find the donor). I feel good most of the time, but I have to be careful around sick people because I get colds & c at the drop of a hat, and I get really tired if I overdo. I have a CT scan tomorrow to check on whether or not I've had a recurrence of the cancer. All of you out there, if you have not checked the donor box at your DMV or gotten the donor sticker on your drivers liscence, please please do so. People like me depend on it. Annie, who loves ya annie@... -- Love is a choice--not simply, or necessarily, a rational choice, but rather a willingness to be present to others without pretense or guile. -- Heyward (theologian) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Hey annie…I have a ct scan tomorrow too to be sure there is no recurrence of kidney cancer on my one remaining kidney. Don’t ya just love that drink stuff? UGH They call it “cheetah” here. It almost makes me ill! GAG I’ve done the donor thing on my license. J Best to you! Maralee >^..^< Re: question wrote: > > What is HCV Annie? > > Thanks > HCV is Hepatitis C Virus. It's an RNA virus I got in 1973 or so from tainted blood. I didn't know I even had it till around '94 or '95, and by then it had turned chronic. It's pretty much trashed my liver; I now have cirrhosis, portal hypertension, hepatocellular carcinoma (had a lesion removed last Oct.), and hepatic encephalopathy (my body is not clearing toxins well so they are affecting my memory and thought patterns). I'm on the national liver transplant list and have also been approved for a live donor transplant (I have to find the donor). I feel good most of the time, but I have to be careful around sick people because I get colds & c at the drop of a hat, and I get really tired if I overdo. I have a CT scan tomorrow to check on whether or not I've had a recurrence of the cancer. All of you out there, if you have not checked the donor box at your DMV or gotten the donor sticker on your drivers liscence, please please do so. People like me depend on it. Annie, who loves ya annie@... -- Love is a choice--not simply, or necessarily, a rational choice, but rather a willingness to be present to others without pretense or guile. -- Heyward (theologian) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 ~grumbling~ I know it was you I was talking to ANNIE!!! I just got my fingers mixed up and wrote the wrong name!!! ~another hug~ Rabecca (who even mixes up my own kids' names) > > > > > > > > What is HCV Annie? > > > > > > Thanks > > > > > > > HCV is Hepatitis C Virus. It's an RNA virus I got in 1973 or so > from > > tainted blood. I didn't know I even had it till around '94 or '95, > and > > by then it had turned chronic. It's pretty much trashed my liver; > I now > > have cirrhosis, portal hypertension, hepatocellular carcinoma (had a > > lesion removed last Oct.), and hepatic encephalopathy (my body is > not > > clearing toxins well so they are affecting my memory and thought > > patterns). I'm on the national liver transplant list and have also > been > > approved for a live donor transplant (I have to find the donor). I > feel > > good most of the time, but I have to be careful around sick people > > because I get colds & c at the drop of a hat, and I get really tired > if I > > overdo. I have a CT scan tomorrow to check on whether or not I've > had a > > recurrence of the cancer. > > > > All of you out there, if you have not checked the donor box at your > DMV > > or gotten the donor sticker on your drivers liscence, please please > do > > so. People like me depend on it. > > > > Annie, who loves ya annie@r... > > -- > > Love is a choice--not simply, or necessarily, a rational choice, but > > rather a willingness to be present to others without pretense or > guile. > > -- Heyward (theologian) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Camden has his autism/add/adhd eval tomorrow, i doubt they will diagnose in one day but ill let you know what happens. Re: question ,I am with you hon! ~hugs~ I am a donor and if my parts are no longer usable when I die, then research can have me because I won't need this shell again!!!~hugs again~Rabecca> > >> > What is HCV Annie?> >> > Thanks> >> > HCV is Hepatitis C Virus. It's an RNA virus I got in 1973 or so from> tainted blood. I didn't know I even had it till around '94 or '95, and> by then it had turned chronic. It's pretty much trashed my liver; I now> have cirrhosis, portal hypertension, hepatocellular carcinoma (had a> lesion removed last Oct.), and hepatic encephalopathy (my body is not> clearing toxins well so they are affecting my memory and thought> patterns). I'm on the national liver transplant list and have also been> approved for a live donor transplant (I have to find the donor). I feel> good most of the time, but I have to be careful around sick people> because I get colds & c at the drop of a hat, and I get really tired if I> overdo. I have a CT scan tomorrow to check on whether or not I've had a> recurrence of the cancer. > > All of you out there, if you have not checked the donor box at your DMV> or gotten the donor sticker on your drivers liscence, please please do > so. People like me depend on it. > > Annie, who loves ya annie@r...> -- > Love is a choice--not simply, or necessarily, a rational choice, but> rather a willingness to be present to others without pretense or guile.> -- Heyward (theologian) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Maralee wrote: > Hey annie?I have a ct scan tomorrow too to be sure there is no > recurrence of kidney cancer on my one remaining kidney. Don?t ya just > love that drink stuff? UGH They call it ?cheetah? here. It almost > makes me ill! GAG I hope your scan goes well and they find nothing. Well, except the stuff that's *s'posed* to be in there! Fortunately, I guess, I had to reschedule my CT scan. I woke up this a.m. sick to my stomach and with probably a little fever. The nurse at the scheduling number told me that I'm not alone, they've had a lot of cancellations this week for the same thing....there's a bug going around. So, my dh made me a nice cuppa Constant Comment, and I'm hoping for some soup later..... BTW, here they call it " awful stuff, " as in " Here's your awful stuff, Mrs. Shank. " And usually a rueful smile accompanies that remark. I love realistic medical people. Annie, who loves ya annie@... -- Love is a choice--not simply, or necessarily, a rational choice, but rather a willingness to be present to others without pretense or guile. -- Heyward (theologian) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 I'd talk to your OB/GYN about it. I don't see why not though. Pam > > Hi everyone, > > Over the Thanksgiving holiday my husband and I decided to try to get > pregnant. Do you think BFL is safe to do while you're pregnant. I > love this program and would hate to quit > > Thanks! > Janel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 I hear you about the leash things. I was a judgmental person about them too until I had kids! Anne -- RE: Question Anne ,my 4 year old grandson ( who lives with me ) is just like that ; he never experienced separation anxiety . He will go with anyone . We live on the beach and Blayke will run up to total strangers and hug them saying “ I go you” After several months of work we finally have managed to get him to no longer run up and hug strangers though he INSISTS on greeting them all ! It is a bit scary .We have a walled courtyard which we gated this summer and we are in the process right now of walling the entire front of our property and installing a solid wood gate across the driveway entrance so that Blayke is safer . Does anyone have an AS kid who loves everyone? A kid who doesn't know what a stranger is? Cameron will go up to anyone and give them a hug or ask to be picked up. Yesterday morning he was watching tv and there was some character on and he said that was his friend. Everyone is his friend. Anyone else's kid like that? Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 Hi Janel, While you should talk to your doc, I'll let you know that the BFL eating is a very healthy way to eat while PG. The exercise, you will have to tone down. No more going for 10s. Feel free to email me if you have more questions. I had been on BFL for 8 months when I got PG last year. I continued on a modified routine. The biggest thing about exercise is to listen to your body. Jen B. > > Hi everyone, > > Over the Thanksgiving holiday my husband and I decided to try to get > pregnant. Do you think BFL is safe to do while you're pregnant. I > love this program and would hate to quit > > Thanks! > Janel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Hi Sharon!! Sorry to hear about the doc being a jerk. IMO that was very unprofessional on his part. Adderall isn't a med that has to be weaned off. Once it is out of the system it's gone . Is he back on the Adderall or on something different now? It sounds to me that the med he is on now is not the one for him. MISSY SAHM to some special kids!!! I am who I am because that's who I am --, 5, Aspergers All kids are gifted; some just open their packages earlier than others. -- Carr Question > > > My son Gavin has Aspergers. He has been on Adderall since 2003. In > November of 2004 my family doctor and I had an argument and shortly > afterwards he refused to prescribe the adderall because he didn't > like my attitude. So gavin went off adderall without being weaned > off of it(i was told they have to be weaned off of it) I searched > for a while to try to find a pediatrician who took our insurance AND > was familiar with Autism in general and a Psych who would prescribe > the meds without therapy. It was hard, but I finally found both and > Gavin started his meds yesterday. My question is this. Gavin was > extremely hyper when off the meds, and threw tantrums alot more than > when he was on them, but now that he started them, I am noticing that > he was just so mean when they wore off last night. And this morning > was an issue, where as when he was off them the tantrums were only > when involved in activity during the days and having to switch modes > (like school). IS this normal? > Sharon > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Well, I don't know anything about medications, but the fact that the doctor wouldn't give your son a refill of his medication because he doesn't like your attitude is completely unprofessional and I would write a letter to the hospital board where he practices and do some serious complaining. Anne -- Question My son Gavin has Aspergers. He has been on Adderall since 2003. In November of 2004 my family doctor and I had an argument and shortly afterwards he refused to prescribe the adderall because he didn't like my attitude. So gavin went off adderall without being weaned off of it(i was told they have to be weaned off of it) I searched for a while to try to find a pediatrician who took our insurance AND was familiar with Autism in general and a Psych who would prescribe the meds without therapy. It was hard, but I finally found both and Gavin started his meds yesterday. My question is this. Gavin was extremely hyper when off the meds, and threw tantrums alot more than when he was on them, but now that he started them, I am noticing that he was just so mean when they wore off last night. And this morning was an issue, where as when he was off them the tantrums were only when involved in activity during the days and having to switch modes (like school). IS this normal? Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 My child is on aderall xr and is very hyper too. The medicine lessens his activity level, which makes him more appropriate in school and easier to handle. That said, his energy level is still way above that of other kids. We also had problems in the evening and mornings at first too. It seemed like we could tell exactly when it wore off in the late afternoon. I know it is a time release capsule but it helped us a lot to give ½ the dosage first thing in the morning to help with the morning routine, and the other ½ at lunch to help with the afternoon. We had to be careful not to give it too late in the afternoon because of going to sleep. The medicine definitely helps, but the results are a lessening of the problem, not a dramatic change. If we go a day or two not taking the medicine we realize that it is probably helping more than we realize. I’m not sure what dosage your Dr. started him on, but it comes as low as 5mg and might be easier on Gavin to start at a low dosage while he adjust. My child started at 10 mg, and after a year or so we decided to increase to 20 mg and this is when we changed to taking it in the morning and afternoon. It helped us a lot. Don’t know if this helps at all. From: Sharon [mailto:sshari25@...] Sent: Wednesday, January 05, 2005 5:30 AM Autism and Aspergers Treatment Subject: Question My son Gavin has Aspergers. He has been on Adderall since 2003. In November of 2004 my family doctor and I had an argument and shortly afterwards he refused to prescribe the adderall because he didn't like my attitude. So gavin went off adderall without being weaned off of it(i was told they have to be weaned off of it) I searched for a while to try to find a pediatrician who took our insurance AND was familiar with Autism in general and a Psych who would prescribe the meds without therapy. It was hard, but I finally found both and Gavin started his meds yesterday. My question is this. Gavin was extremely hyper when off the meds, and threw tantrums alot more than when he was on them, but now that he started them, I am noticing that he was just so mean when they wore off last night. And this morning was an issue, where as when he was off them the tantrums were only when involved in activity during the days and having to switch modes (like school). IS this normal? Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Sharon, I don't know if this is normal, but my son had the same reaction to Adderal. My son has never been mean a day in his life until he took that drug. I know Adderal worked well for you in the past, but did Gavin's dose change with his growth? Is there a 24 hour release of Adderal available? Maybe you need to play with the dosage or try something else? I'd defiantely let your Dr. know. After trying Adderal and Ritalin with really bad results we have found that Straterra works well for my ds and it is 24 hour release. Good luck, Anne, Mom to Jack, 7.2, AS, DSI, ADD > > Gavin was > extremely hyper when off the meds, and threw tantrums alot more than > when he was on them, but now that he started them, I am noticing that > he was just so mean when they wore off last night. And this morning > was an issue, where as when he was off them the tantrums were only > when involved in activity during the days and having to switch modes > (like school). IS this normal? > Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Sharon, My son had bad behavioral side effects from Adderall, so we switched to Straterra and have really had good results! YMMV ~hugs~ Rabecca > > My son Gavin has Aspergers. He has been on Adderall since 2003. In > November of 2004 my family doctor and I had an argument and shortly > afterwards he refused to prescribe the adderall because he didn't > like my attitude. So gavin went off adderall without being weaned > off of it(i was told they have to be weaned off of it) I searched > for a while to try to find a pediatrician who took our insurance AND > was familiar with Autism in general and a Psych who would prescribe > the meds without therapy. It was hard, but I finally found both and > Gavin started his meds yesterday. My question is this. Gavin was > extremely hyper when off the meds, and threw tantrums alot more than > when he was on them, but now that he started them, I am noticing that > he was just so mean when they wore off last night. And this morning > was an issue, where as when he was off them the tantrums were only > when involved in activity during the days and having to switch modes > (like school). IS this normal? > Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 I read on a website about adderall that it should be weaned. Sharon > Hi Sharon!! > > Sorry to hear about the doc being a jerk. IMO that was very unprofessional > on his part. Adderall isn't a med that has to be weaned off. Once it is out > of the system it's gone . Is he back on the Adderall or on something > different now? It sounds to me that the med he is on now is not the one for > him. > > MISSY > SAHM to some special kids!!! > > I am who I am because that's who I am > --, 5, Aspergers > > > All kids are gifted; some just open their > packages earlier than others. > > -- Carr > > Question > > > > > > > > My son Gavin has Aspergers. He has been on Adderall since 2003. In > > November of 2004 my family doctor and I had an argument and shortly > > afterwards he refused to prescribe the adderall because he didn't > > like my attitude. So gavin went off adderall without being weaned > > off of it(i was told they have to be weaned off of it) I searched > > for a while to try to find a pediatrician who took our insurance AND > > was familiar with Autism in general and a Psych who would prescribe > > the meds without therapy. It was hard, but I finally found both and > > Gavin started his meds yesterday. My question is this. Gavin was > > extremely hyper when off the meds, and threw tantrums alot more than > > when he was on them, but now that he started them, I am noticing that > > he was just so mean when they wore off last night. And this morning > > was an issue, where as when he was off them the tantrums were only > > when involved in activity during the days and having to switch modes > > (like school). IS this normal? > > Sharon > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Dear , If this person was fully conversant with oxidative therapies, he would know that the most effective way to increase the body's own antioxidant enzyme protection is by oxidative therapies (paradoxically). This is one of the most well-established effects. This presumes, of course, a reasonable diet, from which the body would get the building blocks to make these enzymes. Mc's and Burger King every day are not going to give you what you need. Best of Health! Dr. Saul Pressman --------------------------------------------------------------------------------\ ----------------------------- ----Original Message Follows---- From: <jl@...> Reply-oxyplus <oxyplus > Subject: Question Date: Sun, 9 Jan 2005 09:44:20 -0000 " I am on a discussion list which the president of the American Oxidative Therapies Association is a member. He writes that people must build up their antioxidant reserves before attempting such therapies. Unfortunately most doctors who use these treatments don't know about this. " Saul I saw this posted on another group what is your opinion on this. I know I have low levels of glutathione but have no adverse and some positive effects from ozone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Thanks Saul - thats what I thought. Question > Date: Sun, 9 Jan 2005 09:44:20 -0000 > > " I am on a discussion list which the > president of the American Oxidative Therapies Association is a member. > He writes that people must build up their antioxidant reserves before > attempting such therapies. Unfortunately most doctors who use these > treatments don't know about this. " > > Saul I saw this posted on another group what is your opinion on this. I > know I have low levels of glutathione but have no adverse and some > positive > effects from ozone > > > > > > > > OxyPLUS is an unmoderated e-ring dealing with oxidative therapies, and > other alternative self-help subjects. > > THERE IS NO MEDICAL ADVICE HERE! > > This list is the 1st Amendment in action. The things you will find here > are for information and research purposes only. We are people sharing > information we believe in. If you act on ideas found here, you do so at > your own risk. Self-help requires intelligence, common sense, and the > ability to take responsibility for your own actions. By joining the list > you agree to hold yourself FULLY responsible FOR yourself. Do not use any > ideas found here without consulting a medical professional, unless you are > a researcher or health care provider. > > You can unsubscribe via e-mail by sending A NEW e-mail to the following > address - NOT TO THE OXYPLUS LIST! - > DO NOT USE REPLY BUTTON & DO NOT PUT THIS IN THE SUBJECT LINE or BODY of > the message! : > > oxyplus-unsubscribeegroups > > oxyplus-normalonelist - switch your subscription to normal mode. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Can you post the name of the list and the name of the person? Thanks Donna http://www.excellentthings.com jl@... wrote: > " I am on a discussion list which the > president of the American Oxidative Therapies Association is a member. > He writes that people must build up their antioxidant reserves before > attempting such therapies. Unfortunately most doctors who use these > treatments don't know about this. " > > Saul I saw this posted on another group what is your opinion on this. I > know I have low levels of glutathione but have no adverse and some > positive > effects from ozone > > > ------------------------------------------------------------------------ > <http://www.nod32.com> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Hi My situation sounds quite similar to yours, although we haven't been told that 's spine is rigid. is also 2 and was 62 degrees in June when we started casting. Her first cast brought her down to 38, her 2nd to 36 and her 3rd to 35. In between castings her spine has worsened again, to 42 and 45 respectively, but this is a normal pattern. The last couple of times I've felt that we haven't got as good a correction as I would have hoped, and seen in other cases. We don't measure RVAD here, so I can't compare like for like there. Has Dr said whether he still believes the casts will work? I imagine that he wouldn't be continuing with the treatment if he didn't have hope in it. This time will only be in this cast for 6 weeks as it is much tighter than before in hope the correction will hold and they can improve on it next time. I'll let you know if this works. I'm afraid I dont have much advice as I don't know anything about the rigidity of the spine. Perhaps you can call Dr and ask him what he meant by it and whether he is able to offer some advice. I find it very frustrating that my doctor won't offer any advice as to timings or success, so I know where you are coming from. Take care dmlmlm <dmayes1@...> wrote: Hi! I have poste a few times.My daughter, , is 2 years old and currently sees Dr. in Erie. She is in her 3rd cast and her curve has been brought down from 64 degrees in June to 37 degrees and her RVAD is down from 30 to 15. However, Dr. , stated this past time that her curve seems to be very rigid. We first found that had scoliosis at 6 months old and it measured at 28 degrees - at 11 months it had progressed to 50 degrees. It seems that others are seeing faster progress with the correction in the cast.My question is has anyone else been told that their child's curve is rigid? If so, have you had any success or is there any hope of their curve being corrected?Thanks in advance for any responses you may have. Mayes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 Hi , I take my daughter to Dr. also I think the results your daughter has had thats good for only being in her 3rd cast and her RVAD is also good results every child is different and may take longer for there curves to come down in her cast before this one he did't get as good results as we thought but in the cast she is in now he got great results 30 degrees out of cast to 4 degrees in the cast we go back in feb to get the next cast this will make her 7th or 8th cast now we done it so many times I'm losing track how many we've had but we found at 6 months old also she was a 20/27 s curve at that time and when we started castingshe was about 65 degrees so there degress are bout the same at there casting time and I think it sounds like it is working has Dr. done all of her casts? I think I've talked to you before but I somtimes forget some of the details on everyone in the group Where are you from and when do you go back to see him. please keep me posted good luck and if you would ever like to talk my # is 330-385-3541 and I can call you back I have that pay one fee per month and make as many calls as you like . Bridgette,in Ohio mom of Hi! I have poste a few times.My daughter, , is 2 years old and currently sees Dr. in Erie. She is in her 3rd cast and her curve has been brought down from 64 degrees in June to 37 degrees and her RVAD is down from 30 to 15. However, Dr. , stated this past time that her curve seems to be very rigid. We first found that had scoliosis at 6 months old and it measured at 28 degrees - at 11 months it had progressed to 50 degrees. It seems that others are seeing faster progress with the correction in the cast.My question is has anyone else been told that their child's curve is rigid? If so, have you had any success or is there any hope of their curve being corrected?Thanks in advance for any responses you may have. Mayes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Many people have mentioned vitamins, but I only take Bcomplex with C. I do take Iron a few times a week because I become anemic if I don't. The main reason I don't take lots of vitamins is that I'm afraid of getting sick to my stomach. I have problems with my belly, namely, indigestion and gas. I don't always digest foods easily. Wouldn't amino acids be rough on the stomach? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 : I haven't heard of the amino acids being helpful for type 3. I think I tried tyrosine a long time ago. I have 3 -5 bags full of vits.. LOL.. these are large workout size bags! I just restarted a once a week swim at a local warm water pool. It's Ai Chi & we are not to talk during the class. The reason I chose it is it's at the Capper Foundation for crippled children and the pool is warm & they have a hoyer lift.. Another possibility, which would be better socially is one of our Y's that have a ramp.. it's a friendly place, they have workout in water 3 times a week, it's mostly older folks & disabled & I've been a few times.. I would enjoy that. Right now I need help though with getting dressed after the swim and finding someone is an issue. Perhaps if I can qualify for help around the house, I could maybe get help w/ the swimming.. they've told me a # of times that I could bring someone along for free as an assistant. At Capper's there's a lady they found to help me that one day. Also, that Capper class is expensive, $48 for 2 months one day a week. It's not as much what other's think... bottom line is what I think, I'm 46 .. It's how I feel being here.. & like you say pushing one self.. I did better in the more independent environment. You teach water aerobics? Do you have sma ? Yes, I think you are right about the class... I will finish out this 2 month class and then maybe sign up this spring for the Y's 3x's a week class. Maybe by then I can find a helper & /or not need one. Swimming yesterday already made a dif in my ability to walk.. I have a stationary bike I'm faithful riding for years.. but doesn't strengthen all muscles, swimming does. Thanks Joan Lomonaco <nicolomo@...> wrote: Dear Joan, Who cares what other people think of you let it go... As far as your independence... I think it would really help you to join a physical therapy pool... it would get you more active... and its a really fun place to socialize... I am a water aerobics instructor volunteer at a pool that is designed for people who are able and disabled... the water is 90 degrees and there are ramps... not sure if you can find exactly the same kind of pool.. but if you found something like it I think it would give yo hope and strength. Also remeber that this condition is driven by the amount of will power you have... mind over matter... The more desire you have to do things the more able you will feel... Also I would suggest you take L-glutamine and L-tyrosine amino acids... they seem to help people particularly with TYPE 3. Good luck... I am here if you need anything else ===== LOMONACO DESIGN Here to Channel Creative Design Solutions for you Voice: 562.900.0274 Fax: 562.684.4102 __________________________________ Do you ? - Easier than ever with enhanced search. Learn more. http://info.mail./mail_250 A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Joan, I live in the exact same apartment complex as you do now. I'm only 21, but the subsidized housing and accessible bathroom/kitchen set-up was perfect. At first I saw it as a means to gain independence because I was moving out of my parents home and going to a local university. I'm the only one under age 65. The people here are big time gossips. They're also very stupid. One rumor about me was that I had been sleeping with " an older, slightly balding, fellow. " I've made some good friends around the building and they are quite blunt and came out and asked me. I asked her to point out who this person was because I've had only two very long term relationships since living here and they are both young 20's. Turns out they kept saying I was sleeping with my father!! - just because he comes here every Friday evening to help take out my trash or bring me food shopping, and I sometimes prepare meals for him so he would stay a couple hours. It used to bother me what people thought until I heard that one. You just have to ignore them. They have nothing better to do than try to make up stories to occupy their time. I've been living here three years now and, like you, I've not given up but have recognized I'm not going out anywhere anymore and I'm not active in my community. One of the major set backs for me is the community itself. It's a nice city, but it's not accessible. Sidewalks don't have curb cuts and the buses are rarely accessible or lifts aren't working. I'm moving out of here next month (and not across town - literally across country). It was a 6 month process of finding an accessible apartment - and before that, it was a 6 month process of convincing myself I deserved it and I can handle life elsewhere! I know it can be intimidating in a setting where they may not have much experience with the disabled and you may be " the only one " but just remember, if you really want to get out and you think you'll be happier somewhere else, you really deserve it and you can do it. It may take time, but it's possible. Just don't give up. If you want to give your complex a try some more, then ask your church friends or those you swim with if they have any other clubs or community activities you can help out with. Call up independent living centers and ask them if you could volunteer there a few days/week. There are always was to get involved more if you have the access to get to other places easily. Personally, even if I were more involved in the community, just living in this apartment setting of elderly people who gossip and talk all day about their aches and pains and death and wills - it's very depressing. I used to join in on the activities in the building, but it's just hard being around them - crocheting parties that aren't filled with " Oh I'm making this for my beautiful granddaughter " but " did you hear about Sally? " or " Chuck has cancer, he's going in for treatment, but you know that C disease, he'll be gone in a few months too. " I've taken from this situation what I can and made the best of it. I've accomplished my goals here - living on my own, proving to myself and my family it's possible; finishing my undergrad degrees; getting a job... and I've given a lot to this building and others when I've realized I could be of help - but I'm done here. I've outgrown the situation, and possibly you have too if you aren't finding things to make your living experience more positive. Good luck. -Kendra > > I have a question, it's probably somewhat subjective in nature but > wondering if anyone has been in this situation or knows of someone > who has. I moved to a retirement community about 4 & 1/2 years > ago. The first 4 years weren't too bad but I have recently come to > dislike living here quite a bit. > We have our own apartments with full kitchen, in my apartment it's > very nice & it's not assisted living so it's independent in nature. > There are advantages in that our mail is inside the building, we > have trash room/shoot on each floor, there is laundry, elevators, > lounge, activities. There are nice people in here but there are > some big time nosey gossips too (like anywhere). > I moved here at the suggestion of my sister and a friend. They see > it as a place I can save money (it's HUD subsidized), and it's > accessible, also a good part of town. I agree there are nice > features. > What I was worried about before I moved here and has happened is > that 4 & 1/2 years ago (I have SMA III, I'm 46 was dx'd at age 6) I > was still walking, driving, didn't even need a cane on nice days. > Now, I am not driving, I have to use an electric chair when I go out > & pretty much I have almost given up on much of my activity outside > of here. > Like I say there are very nice older people in here.. there are some > mean ones, and the few that are my age or thereabouts, either work & > have assistants (the dev. disabled), are disabled w/ workers coming > in daily so they have plenty of peer contact, or they are drug > addicts & /or drunks of which I avoid. This is a large building. > My question is this... I've heard & learned in my coursework for my > degree that when an elderly person moves to a nursing home, their > chances of dying within like 3 years are great. The reason for that > in huge part is that they give up hope, there is no incentive to do > things for oneself, etc. I know this is not a nursing home, it's a > retirement community.. but the majority in here are elderly, their > dreams & goals are much different than someone younger, & there are > a lot of folks in here too, that more or less give up. > I know myself and I had a feeling I would go downhill with a move to > a place like this and I have. I haven't given up totally but I've > been looking at moving back to a regular apartment complex again. > I used to volunteer, take classes, go to my church single's group, > etc.. my activities right now are swimming & church. > Well, I'm being winded here.. has anyone lived in a retirement > center, or ever read about what affect a place like this has on a > person? I have never been married & I date on occassion but too, > dating here is awkward. I dated a guy this summer for a few months > (someone I had dated before & we remained friends)... & it wasn't > pleasant, there was gossip as I brought him thru the lobby, etc.. He > didn't stay overnight, & we did nothing I feel that should be > considered scandalous for older people (I'm very religious). > I'm now afraid too that it is going to be an adjustment to move to a > regular apartment again.. nothing is black and white, I could still > adjust better here.. but I just do not have the incentive I had > before. Anyone relate to this? Any ideas? > Joan Quote Link to comment Share on other sites More sharing options...
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