Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Caryn, I've backed off from a lot of the supplements I was taking, because I just can't swallow that many pills a day anymore. I was up to about 45 for several years and just had to cut back, both because of swallowing them and the cost. AND, they didn't appear to me to be doing much. I've kept certain ones that I can see really make a difference, but am down to a little over half what I was taking. Diet is my biggest source of treatment, other than medication. I tried vegetarianism, but couldn't do that at all. I'm basically following a Paleo diet now. One thing, though, that I really feel I should caution you about is that high level calcium dosage. I was taking 2,100 mg a day and half that in magnesium. After 15 years, I was very low in magnesium and very high in calcium. My Naturopath was very concerned. I was on the verge of hypercalcemia, which is something you really don't want to have. As well as having very unpleasant symptoms, it can damage your health permanently in many ways. Have you had your calcium levels checked, since you've been doing this? I had to have injections of magnesium for months to bring things back into balance, and omit the calcium altogether. I still can't take calcium without horrendous muscle cramps, and it's been several years since that happened. I also extensively research, but not so much in the supplement line anymore as the medical line......trying to put various blood abnormalities and symptoms together to come out with what could be the base cause of my illness. I suspect it's going to be something that supplements and diet can't cure, since I've been trying with them since 1994. I'm sure it very well could be working for you, as you may have 'hit on' just the things that are curing what started your problems. We are all so different, though, that it probably won't work for a whole lot of us. Carol Washington, USA Hi - new member > Hi all > I'm an extensive researcher who has had CFS for 13 months. I have > watched many sites and tried many different supplements/therapies. > I'd like to share what I've been doing. I feel I'm about 80% > recovered and have fewer and fewer crashes, and my symptons are less > and less. I'm fairly strict about keeping to my lifestyle and diet. > > 40 years old,a total vegetarian, was always fit and never ill. > I've kept up moderate jogging (about 4kms per run)since I got ill > (sudden onset) > No smoking, moderate wine spritzers. > I go to Quantam Xxroid once a week with a registered dietician (a > google search will expand on this fantastic machine). > My supplementation is only product that I am sure is sound, natural > and of a relaible source (mostly Solgar range) > Take a good multivit as a base x 1 daily > Take up to 15grams powdered ASCORBATE calcium (vit c) NOT ASCORBIC so > no tummy problems! > Vit b12 1000ug > Selenium 200ug p/day (1/2 am, 1/2 pm) > GABA 1000mg am 1000mg pm > lysine 1000mg - 3000mg on/off 3 mths > silica optional > Comprehensive amino multi > digestive enzymes > chromium picolate 200ug am and pm > Co-Q10 60mg p/day > lipoic acid > lipotropic factors > Glutamine 500mg p/d > Vit E 400mg p/d > Omega 3/6/9 and flaxseed > Potassium 200mg am and pm > acidophilous(bacteria - good) > msm/glucosamine (joint pain) > milk thistle (liver detox) > L_Carnitine > Olive leaf 500mg 3 times p/d > antioxidant multi > bioflavinoid multi > Strong vit b multi > colloidal silver .9999% 1 cap p/d > Solgar's " Green Range " - Earth Source - powdered glyconutrients and a > whole host of other things. Excellent > Aloe Vera - in pulp form - standardises 1/4 cup p/d > Rhodiola Rosea - stimulant herb - antiviral, stabalises adrenal > hormones, boosts immunity > Tyrosine 500mg p/d > St s Wort - mood enhancer, blood purifier > 5HTP - enhancer 50mg am and pm > Pregenelone > Calcium/magnesium up to 15 grams a day (this is a > personal choice as it REALLY helps me, and no tolerence level yet > reached, so I must be seriously depleted) > Glutathione > NAC (Cheaper than taking above) > I am repeating a lot of the same stuff, but I'd rather overinsure > than underinsure and take too little. > I have used an ultra-violet light once a week as I find it helps draw > out the toxins through the skin. > I've done 2 liver flushes (Dr Hulda ) > > I'm sure this list is going to unleash a lot of comment, but so far > it has all worked for me, and I've had NO negative reactions. I am > very experimental in my quantities as there is no other way of > knowing. My body should tell me, and so far it's been positive. I > live in South Africa, there is a very limited range compared to the > US and UK, so I have to pay a huge amount every month but I am > getting well. I use stevia and severely limit my sugar. No coffee, > carbonated drinks, very little bread, my diet is very mean in > general. Processed food is virtually nil. > There is NO way I'm living with this illness forever, so I'm doing as > much as I can to get myself right. > I downloaded a book off the internet a while ago, 'The Chronic > Fatigue Survival Guide' by Flammer. To me, this has been one > of the best sources of info I've yet come accross. Her website is > www.chronicfatiguesurvivalguide.com It cuts through all the info > overload and as she managed to get rid of her illness in 15 months, > well, that is fantastic. > Please feel free to ask any questions of me. > Caryn > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Hi Carol I am aware of the cal/mag issue, but hopefully as soon as I can I'll start 'normalising'my intake. I also go to a Science center called 'Molecular Sciences' who do blood and urine screening with CFS and other type illnesses. I also find it a bind with ALL these pills everyday and of course nutrition is certainly evolving in it's own right for an army of illnesses. Where's the fun any more! Ha ha - what can we do. Saw a very interesting program by chance on tv other day regarding the red blood cells and CFS. Definite abnormalities, (as we know)but seemed to be a new take on the study done. I need to double check what they were saying and get back to you. Taped it, but have loaned the tape out. Regards Caryn > Caryn, > I've backed off from a lot of the supplements I was taking, because I just > can't swallow that many pills a day anymore. I was up to about 45 for > several years and just had to cut back, both because of swallowing them and > the cost. AND, they didn't appear to me to be doing much. I've kept > certain ones that I can see really make a difference, but am down to a > little over half what I was taking. Diet is my biggest source of treatment, > other than medication. I tried vegetarianism, but couldn't do that at all. > I'm basically following a Paleo diet now. > > One thing, though, that I really feel I should caution you about is that > high level calcium dosage. I was taking 2,100 mg a day and half that in > magnesium. After 15 years, I was very low in magnesium and very high in > calcium. My Naturopath was very concerned. I was on the verge of > hypercalcemia, which is something you really don't want to have. As well as > having very unpleasant symptoms, it can damage your health permanently in > many ways. Have you had your calcium levels checked, since you've been > doing this? I had to have injections of magnesium for months to bring > things back into balance, and omit the calcium altogether. I still can't > take calcium without horrendous muscle cramps, and it's been several years > since that happened. > > I also extensively research, but not so much in the supplement line anymore > as the medical line......trying to put various blood abnormalities and > symptoms together to come out with what could be the base cause of my > illness. I suspect it's going to be something that supplements and diet > can't cure, since I've been trying with them since 1994. > > I'm sure it very well could be working for you, as you may have 'hit on' > just the things that are curing what started your problems. We are all so > different, though, that it probably won't work for a whole lot of us. > Carol > > Washington, USA > Hi - new member > > > > Hi all > > I'm an extensive researcher who has had CFS for 13 months. I have > > watched many sites and tried many different supplements/therapies. > > I'd like to share what I've been doing. I feel I'm about 80% > > recovered and have fewer and fewer crashes, and my symptons are less > > and less. I'm fairly strict about keeping to my lifestyle and diet. > > > > 40 years old,a total vegetarian, was always fit and never ill. > > I've kept up moderate jogging (about 4kms per run)since I got ill > > (sudden onset) > > No smoking, moderate wine spritzers. > > I go to Quantam Xxroid once a week with a registered dietician (a > > google search will expand on this fantastic machine). > > My supplementation is only product that I am sure is sound, natural > > and of a relaible source (mostly Solgar range) > > Take a good multivit as a base x 1 daily > > Take up to 15grams powdered ASCORBATE calcium (vit c) NOT ASCORBIC so > > no tummy problems! > > Vit b12 1000ug > > Selenium 200ug p/day (1/2 am, 1/2 pm) > > GABA 1000mg am 1000mg pm > > lysine 1000mg - 3000mg on/off 3 mths > > silica optional > > Comprehensive amino multi > > digestive enzymes > > chromium picolate 200ug am and pm > > Co-Q10 60mg p/day > > lipoic acid > > lipotropic factors > > Glutamine 500mg p/d > > Vit E 400mg p/d > > Omega 3/6/9 and flaxseed > > Potassium 200mg am and pm > > acidophilous(bacteria - good) > > msm/glucosamine (joint pain) > > milk thistle (liver detox) > > L_Carnitine > > Olive leaf 500mg 3 times p/d > > antioxidant multi > > bioflavinoid multi > > Strong vit b multi > > colloidal silver .9999% 1 cap p/d > > Solgar's " Green Range " - Earth Source - powdered glyconutrients and a > > whole host of other things. Excellent > > Aloe Vera - in pulp form - standardises 1/4 cup p/d > > Rhodiola Rosea - stimulant herb - antiviral, stabalises adrenal > > hormones, boosts immunity > > Tyrosine 500mg p/d > > St s Wort - mood enhancer, blood purifier > > 5HTP - enhancer 50mg am and pm > > Pregenelone > > Calcium/magnesium up to 15 grams a day (this is a > > personal choice as it REALLY helps me, and no tolerence level yet > > reached, so I must be seriously depleted) > > Glutathione > > NAC (Cheaper than taking above) > > I am repeating a lot of the same stuff, but I'd rather overinsure > > than underinsure and take too little. > > I have used an ultra-violet light once a week as I find it helps draw > > out the toxins through the skin. > > I've done 2 liver flushes (Dr Hulda ) > > > > I'm sure this list is going to unleash a lot of comment, but so far > > it has all worked for me, and I've had NO negative reactions. I am > > very experimental in my quantities as there is no other way of > > knowing. My body should tell me, and so far it's been positive. I > > live in South Africa, there is a very limited range compared to the > > US and UK, so I have to pay a huge amount every month but I am > > getting well. I use stevia and severely limit my sugar. No coffee, > > carbonated drinks, very little bread, my diet is very mean in > > general. Processed food is virtually nil. > > There is NO way I'm living with this illness forever, so I'm doing as > > much as I can to get myself right. > > I downloaded a book off the internet a while ago, 'The Chronic > > Fatigue Survival Guide' by Flammer. To me, this has been one > > of the best sources of info I've yet come accross. Her website is > > www.chronicfatiguesurvivalguide.com It cuts through all the info > > overload and as she managed to get rid of her illness in 15 months, > > well, that is fantastic. > > Please feel free to ask any questions of me. > > Caryn > > > > > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 You are good to be doing so much so quickly. It seems that the longer one has CFS the harder it is to reverse it. This is a problem because most people go 13 months before they can even get a diagnosis. I hate to be a person that says " if you get better then you didn't have CFS " because I don't really believe that, but one thing that strikes me about your description is that you've kept up moderate jogging. I have never seen a case of CFS where the person could jog. I notice that the book you reference is " The Chronic Fatigue Survival Guide " and not Chronic Fatigue Syndrome. Many people have chronic fatigue but not chronic fatigue syndrome. It is possible that aggressive treatment from the beginning kept you from developing full blown CFS. But you didn't describe your illness so it is not clear from what you said whether you actually had CFS. Did you at any point meet the CDC criteria for CFS? Did you ever have fevers, cognitive problems, immune dysfunction? Thanks, Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Hi Doris For the first 6 months of this illness I was in bed. Did all the blood tests etc, yes, full blown CFS. I was aggresive about getting better because I couldn't accept being ill. I have had the constant fevers, brain fog, disibitating headaches, NO energy to even get up, memory, well last year isn't even a blur because I can't remember it at all. ALL of it. I live in South Africa, so testing was done according to specs here, and I certainly qualified. The jogging I pushed because I found the mental stimulation of getting out of bed and getting to do something helped enormously. I know it's controversial and have had many people advise against it, but I've never pushed to limits. If it's apparent that I can't do it the following day, I rest. I found it became endless days and nights of pain and a spiral of going further downwards, so I made myself get up and go. Just seeing something different and feeling real things (sun, wind)goes a long way in mood upliftment. Even 10 minutes worth. My illness was sudden onset, I wasn't ill before, just woke up with the most incredible pain in my head - thought I was going to die. And it all progressed from that day. Looking back at my past, I guess it's easy in hindsight to tie certain issues, stress, trauma, shingles 10 years ago and so on. Very typical A type personality, too analytical and precise. Sometimes forget to smell the daisies!! Anyhow, go into the book site I recommended, you may find some answers there from the author to whom I have an extremely similar story. I work 24 hours a day at getting as well as I can, and I try and arm myself with as much info as I can. Take care Caryn > You are good to be doing so much so quickly. It seems that the longer one has CFS the harder it is to reverse it. This is a problem because most people go 13 months before they can even get a diagnosis. > > I hate to be a person that says " if you get better then you didn't have CFS " because I don't really believe that, but one thing that strikes me about your description is that you've kept up moderate jogging. I have never seen a case of CFS where the person could jog. > > I notice that the book you reference is " The Chronic Fatigue Survival Guide " and not Chronic Fatigue Syndrome. Many people have chronic fatigue but not chronic fatigue syndrome. It is possible that aggressive treatment from the beginning kept you from developing full blown CFS. But you didn't describe your illness so it is not clear from what you said whether you actually had CFS. Did you at any point meet the CDC criteria for CFS? Did you ever have fevers, cognitive problems, immune dysfunction? > > Thanks, > Doris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Hi, I had sudden viral onset too. I was bed ridden for over a year. I had been a runner, and after 8 months or so I started walking then gradually began running again. I think it helped me immensely. I have all of the sx of CFIDS but to much less of a degree once I was able to run and do aerobics. I came down with CFIDS in '86 and then got back into running and I worked full time until I sprained my back in 2000. I became bed ridden again (with my back) for a year and a half. That caused me to have much worse CFIDS sx. I got over my low back pain with Pilates and yoga and time but now I'm way more sick with the CFIDS sx again. I'm on a new diet and plan and once in a while I feel good enough to swim or skate (I'm afraid to run because my low back still can't really handle running, but skating and swimming are fine). I crash for a week when I exercise now. But I've been reading that one should be on a new program for 10 to 12 weeks before they start exercising again. So I'm hopeful that in Aug or Sept I'll be able to start exercising without crashing and I plan on getting back into running. I kept the weight off with running and I believe it helps me more than anything else. That's my story and I'm sticking to it. Tracey carynannreece wrote: >Hi Doris >For the first 6 months of this illness I was in bed. Did all the >blood tests etc, yes, full blown CFS. I was aggresive about getting >better because I couldn't accept being ill. I have had the constant >fevers, brain fog, disibitating headaches, NO energy to even get up, >memory, well last year isn't even a blur because I can't remember it >at all. ALL of it. I live in South Africa, so testing was done >according to specs here, and I certainly qualified. >The jogging I pushed because I found the mental stimulation of >getting out of bed and getting to do something helped enormously. I >know it's controversial and have had many people advise against it, >but I've never pushed to limits. If it's apparent that I can't do it >the following day, I rest. I found it became endless days and nights >of pain and a spiral of going further downwards, so I made myself get >up and go. Just seeing something different and feeling real things >(sun, wind)goes a long way in mood upliftment. Even 10 minutes worth. >My illness was sudden onset, I wasn't ill before, just woke up with >the most incredible pain in my head - thought I was going to die. >And it all progressed from that day. Looking back at my past, I guess >it's easy in hindsight to tie certain issues, stress, trauma, >shingles 10 years ago and so on. Very typical A type personality, >too analytical and precise. Sometimes forget to smell the daisies!! >Anyhow, go into the book site I recommended, you may find some >answers there from the author to whom I have an extremely similar >story. >I work 24 hours a day at getting as well as I can, and I try and arm >myself with as much info as I can. >Take care >Caryn > > > > > > > >>You are good to be doing so much so quickly. It seems that the >> >> >longer one has CFS the harder it is to reverse it. This is a problem >because most people go 13 months before they can even get a >diagnosis. > > >>I hate to be a person that says " if you get better then you didn't >> >> >have CFS " because I don't really believe that, but one thing that >strikes me about your description is that you've kept up moderate >jogging. I have never seen a case of CFS where the person could >jog. > > >>I notice that the book you reference is " The Chronic Fatigue >> >> >Survival Guide " and not Chronic Fatigue Syndrome. Many people have >chronic fatigue but not chronic fatigue syndrome. It is possible >that aggressive treatment from the beginning kept you from developing >full blown CFS. But you didn't describe your illness so it is not >clear from what you said whether you actually had CFS. Did you at >any point meet the CDC criteria for CFS? Did you ever have fevers, >cognitive problems, immune dysfunction? > > >>Thanks, >>Doris >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Caryn, How long have you been a vegetarian and why did you decide to choose this kind of eating lifestyle? -O > Hi all > I'm an extensive researcher who has had CFS for 13 months. I have > watched many sites and tried many different supplements/therapies. > I'd like to share what I've been doing. I feel I'm about 80% > recovered and have fewer and fewer crashes, and my symptons are less > and less. I'm fairly strict about keeping to my lifestyle and diet. > > 40 years old,a total vegetarian, was always fit and never ill. > I've kept up moderate jogging (about 4kms per run)since I got ill > (sudden onset) > No smoking, moderate wine spritzers. > I go to Quantam Xxroid once a week with a registered dietician (a > google search will expand on this fantastic machine). > My supplementation is only product that I am sure is sound, natural > and of a relaible source (mostly Solgar range) > Take a good multivit as a base x 1 daily > Take up to 15grams powdered ASCORBATE calcium (vit c) NOT ASCORBIC so > no tummy problems! > Vit b12 1000ug > Selenium 200ug p/day (1/2 am, 1/2 pm) > GABA 1000mg am 1000mg pm > lysine 1000mg - 3000mg on/off 3 mths > silica optional > Comprehensive amino multi > digestive enzymes > chromium picolate 200ug am and pm > Co-Q10 60mg p/day > lipoic acid > lipotropic factors > Glutamine 500mg p/d > Vit E 400mg p/d > Omega 3/6/9 and flaxseed > Potassium 200mg am and pm > acidophilous(bacteria - good) > msm/glucosamine (joint pain) > milk thistle (liver detox) > L_Carnitine > Olive leaf 500mg 3 times p/d > antioxidant multi > bioflavinoid multi > Strong vit b multi > colloidal silver .9999% 1 cap p/d > Solgar's " Green Range " - Earth Source - powdered glyconutrients and a > whole host of other things. Excellent > Aloe Vera - in pulp form - standardises 1/4 cup p/d > Rhodiola Rosea - stimulant herb - antiviral, stabalises adrenal > hormones, boosts immunity > Tyrosine 500mg p/d > St s Wort - mood enhancer, blood purifier > 5HTP - enhancer 50mg am and pm > Pregenelone > Calcium/magnesium up to 15 grams a day (this is a > personal choice as it REALLY helps me, and no tolerence level yet > reached, so I must be seriously depleted) > Glutathione > NAC (Cheaper than taking above) > I am repeating a lot of the same stuff, but I'd rather overinsure > than underinsure and take too little. > I have used an ultra-violet light once a week as I find it helps draw > out the toxins through the skin. > I've done 2 liver flushes (Dr Hulda ) > > I'm sure this list is going to unleash a lot of comment, but so far > it has all worked for me, and I've had NO negative reactions. I am > very experimental in my quantities as there is no other way of > knowing. My body should tell me, and so far it's been positive. I > live in South Africa, there is a very limited range compared to the > US and UK, so I have to pay a huge amount every month but I am > getting well. I use stevia and severely limit my sugar. No coffee, > carbonated drinks, very little bread, my diet is very mean in > general. Processed food is virtually nil. > There is NO way I'm living with this illness forever, so I'm doing as > much as I can to get myself right. > I downloaded a book off the internet a while ago, 'The Chronic > Fatigue Survival Guide' by Flammer. To me, this has been one > of the best sources of info I've yet come accross. Her website is > www.chronicfatiguesurvivalguide.com It cuts through all the info > overload and as she managed to get rid of her illness in 15 months, > well, that is fantastic. > Please feel free to ask any questions of me. > Caryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 That's great. Maybe it shows that agressive treatment early on really helps. I hope you send your information to some of the researchers in the field (maybe those who write books) so the information gets out there and can help newly diagnosed people. As far as the exercising thing, I believe it is not central to CFS but maybe more specific to some biochemistry we have going on, whether we are low in certain things. When I had my first major incidence of CFS (like you quick onset), I was so sick with viral symptoms and low blood pressure I could barely walk let alone run. But after a couple years when I was recovering (going into remission), I started walked on a treadmill and I believe it did help. My latest relapse is the first time I really had the " extreme fatigue after physical exertion " phenomena, and just lifting a 1# weight a few times makes me feel sicker the next day. So there is something different between then and now, probably some change in how my body is working. Thanks, Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Hi Jen and welcome to the group!! It sounds like you have such a trooper in little Mason. Although our daughter is not in a cast ( we go to Shriner's this coming week) there are so many moms in here that will be able to help you with your questions about the cast and so on. This is such a great group of women in here and I think the one other thing we all have in common besides children with scoli and so on is that we have some of the bravest and wonderful, happy children!! It sounds like your family and little Mason have been through quite a first 12 months. There is so much info in this group from all the moms, and each seems to have a special gift for helping others in different ways. Hang in there and someone will post to your questions soon. By the way.....I am Tracey ( nice to meet you). We have a 16 mo old daughter, Lexi who was diagnosed with scoliosis officially in January 2005. We go for consult this week with Dr about casting. Good luck and welcome again!! Tracey > > Hi Everyone > I have just joined this group and wanted to introduce myself. My > name is Jen and my son's name is Mason. He is 12mths old. Mason has > scoliosis, kyphosis and Hypoplastic Left Heart Syndrome. He has had > to open heart surgeries (and will have atleast one more), 4 cardiac > catheterizations, and 2 angioplasties. His scoliosis is only at 20 > degrees right now. But his kyphosis is at 35 degrees. His kyphosis > was caused by a deformity of the L-1 vertebrae. From research I > believe this is called Schuermanns Kyphosis, the deformity malformed > the vertebrae into a wedge instead of a box. Mason was put in a > spika cast on Thursday to try to correct the kyphosis. I am haveing > a hard time dealing with the cast along with all of the other > problems we have had to deal with. > > Mase was days away from taking off walking by himself and now he > will have to go thru physical therapy again to relearn everything. > His cast is from under his arms to his right knee. So the only thing > he is able to do is roll around on the floor and scoot on his belly. > I need advice on how to keep his cast clean. How do I keep his skin > from breaking down? Any advice is helpful. > > OH we live in land. We go to s Hopkins and see Dr Sponseller > for his orhto. We also go to Childrens Hospital of Philadelphia for > all of his heart surgeries and procedures. Mason also has a carepage > at www.carepages.com his name is MasonNeal, no spaces. > > Hope to hear from you guys soon. > Thank YOu > > Jen and Mason Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Hello, and welcome! I am pretty new here myself. My daughter, Eliana (pics under photos) was born two months early and had surgery at 24 hours old for annular pancreas causing duodenal atresia, and we spent the first two months in the hospital. I can identify with the long year you have been through! Eliana was diagnosed at six months with scoli at which time she was 50 degrees with a kyphosis of 45, and at a year old she was at 100 degrees (right thoracic) cobb and 65 degree kyphosis, and we are scheduled for our first cast at the Shriners Intermountain Hospital in Salt Lake City this week. Unfortunately, I too need advice about skin care, bathing etc. and was planning on posting today to ask. This is a wonderful group of parents, and I'm sure one of the very inteligent kindhearted ladies in here will post some advice for us. I am so gratefull I found this group, it's been an amazing amount of support to me! My name is by the way, and I wish the best for your little Mason...hopefully he'll adjust. I can only wonder what Eliana's cast will look like, cosidering she has marked kyphosis. Good luck, and remember you can always find support here. Take care, , mom of Eliana > Hi Everyone > I have just joined this group and wanted to introduce myself. My > name is Jen and my son's name is Mason. He is 12mths old. Mason has > scoliosis, kyphosis and Hypoplastic Left Heart Syndrome. He has had > to open heart surgeries (and will have atleast one more), 4 cardiac > catheterizations, and 2 angioplasties. His scoliosis is only at 20 > degrees right now. But his kyphosis is at 35 degrees. His kyphosis > was caused by a deformity of the L-1 vertebrae. From research I > believe this is called Schuermanns Kyphosis, the deformity malformed > the vertebrae into a wedge instead of a box. Mason was put in a > spika cast on Thursday to try to correct the kyphosis. I am haveing > a hard time dealing with the cast along with all of the other > problems we have had to deal with. > > Mase was days away from taking off walking by himself and now he > will have to go thru physical therapy again to relearn everything. > His cast is from under his arms to his right knee. So the only thing > he is able to do is roll around on the floor and scoot on his belly. > I need advice on how to keep his cast clean. How do I keep his skin > from breaking down? Any advice is helpful. > > OH we live in land. We go to s Hopkins and see Dr Sponseller > for his orhto. We also go to Childrens Hospital of Philadelphia for > all of his heart surgeries and procedures. Mason also has a carepage > at www.carepages.com his name is MasonNeal, no spaces. > > Hope to hear from you guys soon. > Thank YOu > > Jen and Mason Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Hi Jen, Welcome to the group! My name is and my 7 year old daughter Kylie was born with scoliosis and developed kyphosis about 2 years ago. Her scoliosis is currently at 60 degrees and her kyphosis is currently at 50 degrees. Kylie's kyphosis is in her upper back, starting to go into her neck. We have had Risser casts(with and without neck support) and Spica casts for her bilateral hip dysplasia. How long has Mason been in his cast? You'd be surprized at how well kids can adapt. Here are some of the ways I found to help keep the Spica cast clean. Try to keep as much of it covered so as he is rolling around on the floor, it has a less chance of getting dirty. I'm asuming he's not potty trained, right? Kylie's Spica casts were a bit different, hers went under her arms and down both legs to her ankles. Her legs were also out to her sides and bent at the knees. For the diaper area, I lined the cast with " panty liners " , sounds odd but it worked great. I took panty liners and stuck half of it to the outside of the cast, then tucked the rest under so it stuck to the inside of the cast. Then I would take a newborn diaper and stuff the sides under the cast, all the way around. Then I took a much larger diaper and put it on her like normal to hold the smaller diaper in place. I would change her constantly and if the panty liners got wet or soiled, I would change them. It sounds like a lot of work but I was told that they had never seen a cast of that kind so clean!(we had 5 months of them) I hope this made any sense and helped you. I will attatch a photo to try to make sense of all this. Also, if you have any questions about anything, let me know. I can also privatly e-mail my phone # to you if you would like, just let me know. I wish you and Mason the best! It sounds like you both have been through a lot! --- jenniferlevie <jenniferlevie@...> wrote: > > Hi Everyone > I have just joined this group and wanted to > introduce myself. My > name is Jen and my son's name is Mason. He is 12mths > old. Mason has > scoliosis, kyphosis and Hypoplastic Left Heart > Syndrome. He has had > to open heart surgeries (and will have atleast one > more), 4 cardiac > catheterizations, and 2 angioplasties. His scoliosis > is only at 20 > degrees right now. But his kyphosis is at 35 > degrees. His kyphosis > was caused by a deformity of the L-1 vertebrae. From > research I > believe this is called Schuermanns Kyphosis, the > deformity malformed > the vertebrae into a wedge instead of a box. Mason > was put in a > spika cast on Thursday to try to correct the > kyphosis. I am haveing > a hard time dealing with the cast along with all of > the other > problems we have had to deal with. > > Mase was days away from taking off walking by > himself and now he > will have to go thru physical therapy again to > relearn everything. > His cast is from under his arms to his right knee. > So the only thing > he is able to do is roll around on the floor and > scoot on his belly. > I need advice on how to keep his cast clean. How do > I keep his skin > from breaking down? Any advice is helpful. > > OH we live in land. We go to s Hopkins and > see Dr Sponseller > for his orhto. We also go to Childrens Hospital of > Philadelphia for > all of his heart surgeries and procedures. Mason > also has a carepage > at www.carepages.com his name is MasonNeal, no > spaces. > > Hope to hear from you guys soon. > Thank YOu > > Jen and Mason > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Hi Thank you for all of the info Can you explain again how you put the panty liners in... I am having a hard time trying to figure something out for Mase. At first (after I realized that he was peeing in the cast) I was putting a rag at the top (inside) his diaper...that seemed to help, but i only have so many rags. Then we went today to get the cast cut down around his knee and they suggested premie diapers jsut like you said. But so far they dont seem to be that big of help, his belly is still wet. And he smells horrible. How did you deal with her skin being so raw? It has only been 5 days and he already has breakdown.I took a look at Kylie on the photos page...she is so cute. Thank you for getting back to me. Talk to you soon Jen and Mase Lether <nlether@...> wrote: Hi Jen,Welcome to the group!My name is and my 7 year old daughter Kyliewas born with scoliosis and developed kyphosis about 2years ago. Her scoliosis is currently at 60 degreesand her kyphosis is currently at 50 degrees. Kylie'skyphosis is in her upper back, starting to go into herneck. We have had Risser casts(with and without necksupport) and Spica casts for her bilateral hipdysplasia. How long has Mason been in his cast? You'd be surprized at how well kids can adapt. Here are some of the ways I found to help keep theSpica cast clean. Try to keep as much of it coveredso as he is rolling around on the floor, it has a lesschance of getting dirty. I'm asuming he's not pottytrained, right? Kylie's Spica casts were a bitdifferent, hers went under her arms and down both legsto her ankles. Her legs were also out to her sidesand bent at the knees. For the diaper area, I linedthe cast with "panty liners", sounds odd but it workedgreat. I took panty liners and stuck half of it tothe outside of the cast, then tucked the rest under soit stuck to the inside of the cast. Then I would takea newborn diaper and stuff the sides under the cast,all the way around. Then I took a much larger diaperand put it on her like normal to hold the smallerdiaper in place. I would change her constantly and ifthe panty liners got wet or soiled, I would changethem. It sounds like a lot of work but I was toldthat they had never seen a cast of that kind soclean!(we had 5 months of them)I hope this made any sense and helped you.I will attatch a photo to try to make sense of allthis. Also, if you have any questions about anything,let me know. I can also privatly e-mail my phone # toyou if you would like, just let me know.I wish you and Mason the best! It sounds like you bothhave been through a lot!--- jenniferlevie <jenniferlevie@...> wrote:> > Hi Everyone> I have just joined this group and wanted to> introduce myself. My > name is Jen and my son's name is Mason. He is 12mths> old. Mason has > scoliosis, kyphosis and Hypoplastic Left Heart> Syndrome. He has had > to open heart surgeries (and will have atleast one> more), 4 cardiac > catheterizations, and 2 angioplasties. His scoliosis> is only at 20 > degrees right now. But his kyphosis is at 35> degrees. His kyphosis > was caused by a deformity of the L-1 vertebrae. From> research I > believe this is called Schuermanns Kyphosis, the> deformity malformed > the vertebrae into a wedge instead of a box. Mason> was put in a > spika cast on Thursday to try to correct the> kyphosis. I am haveing > a hard time dealing with the cast along with all of> the other > problems we have had to deal with. > > Mase was days away from taking off walking by> himself and now he > will have to go thru physical therapy again to> relearn everything. > His cast is from under his arms to his right knee.> So the only thing > he is able to do is roll around on the floor and> scoot on his belly. > I need advice on how to keep his cast clean. How do> I keep his skin > from breaking down? Any advice is helpful. > > OH we live in land. We go to s Hopkins and> see Dr Sponseller > for his orhto. We also go to Childrens Hospital of> Philadelphia for > all of his heart surgeries and procedures. Mason> also has a carepage > at www.carepages.com his name is MasonNeal, no> spaces.> > Hope to hear from you guys soon. > Thank YOu> > Jen and Mason> > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Hi Jen and Mason, Welcome to CAST! Its been 51/2 years since my little one was in spika cast, but here is what I remember; Actually, I did exactly what recommended. I used panty liners for the edges of the cast, and then stuffed a kotex or 2, up in there for soiling....Then used a reg. diaper to hold it all in place. I would have to check for wetness, by the hour....and kept a washcloth with soap and water and a hair dryer close by at all times... You mentioned that his skin is already breaking down...Is this due to the moisture, the edges of the cast, or both? Was the cast trimmed enough under the arms, around the belly, and at the top of the legs? Did they provide you with moleskin to make the cast edges more smooth? Olivia wore a spika for only 6 weeks, at 5 mo.s old, for her subluxed left hip....Does Mason have hip issues? I will try and check out his carepage right now....Is there a picture of his new cast on this site? Is this cast made of plaster? talk soon, HRH ( H.) HI - New Member > > > Hi Everyone > I have just joined this group and wanted to introduce myself. My > name is Jen and my son's name is Mason. He is 12mths old. Mason has > scoliosis, kyphosis and Hypoplastic Left Heart Syndrome. He has had > to open heart surgeries (and will have atleast one more), 4 cardiac > catheterizations, and 2 angioplasties. His scoliosis is only at 20 > degrees right now. But his kyphosis is at 35 degrees. His kyphosis > was caused by a deformity of the L-1 vertebrae. From research I > believe this is called Schuermanns Kyphosis, the deformity malformed > the vertebrae into a wedge instead of a box. Mason was put in a > spika cast on Thursday to try to correct the kyphosis. I am haveing > a hard time dealing with the cast along with all of the other > problems we have had to deal with. > > Mase was days away from taking off walking by himself and now he > will have to go thru physical therapy again to relearn everything. > His cast is from under his arms to his right knee. So the only thing > he is able to do is roll around on the floor and scoot on his belly. > I need advice on how to keep his cast clean. How do I keep his skin > from breaking down? Any advice is helpful. > > OH we live in land. We go to s Hopkins and see Dr Sponseller > for his orhto. We also go to Childrens Hospital of Philadelphia for > all of his heart surgeries and procedures. Mason also has a carepage > at www.carepages.com his name is MasonNeal, no spaces. > > Hope to hear from you guys soon. > Thank YOu > > Jen and Mason > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Hi Jen, It sounds like your little guy is a real trooper. I hope you are able to get his casting issues figured out soon. My name is and my son, Ian, was diagnosed with infantile scoliosis at 6 months. He has a 37 degree right thoracic curve. He is not in a cast yet, but we are scheduled for him to get one in April at the Shriners in Erie, PA. I have some pics of him in the photo area if you want to take a look. I look forward to getting to know you and Mason. Noelle (12-2-01)Ian (8-15-04) HI - New Member Hi EveryoneI have just joined this group and wanted to introduce myself. My name is Jen and my son's name is Mason. He is 12mths old. Mason has scoliosis, kyphosis and Hypoplastic Left Heart Syndrome. He has had to open heart surgeries (and will have atleast one more), 4 cardiac catheterizations, and 2 angioplasties. His scoliosis is only at 20 degrees right now. But his kyphosis is at 35 degrees. His kyphosis was caused by a deformity of the L-1 vertebrae. From research I believe this is called Schuermanns Kyphosis, the deformity malformed the vertebrae into a wedge instead of a box. Mason was put in a spika cast on Thursday to try to correct the kyphosis. I am haveing a hard time dealing with the cast along with all of the other problems we have had to deal with. Mase was days away from taking off walking by himself and now he will have to go thru physical therapy again to relearn everything. His cast is from under his arms to his right knee. So the only thing he is able to do is roll around on the floor and scoot on his belly. I need advice on how to keep his cast clean. How do I keep his skin from breaking down? Any advice is helpful. OH we live in land. We go to s Hopkins and see Dr Sponseller for his orhto. We also go to Childrens Hospital of Philadelphia for all of his heart surgeries and procedures. Mason also has a carepage at www.carepages.com his name is MasonNeal, no spaces.Hope to hear from you guys soon. Thank YOuJen and Mason Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Hi sounds like you make a lot out of your life, and very active with things. That is great. I am Mom to Ian age 7.5 type 2/3. He can walk some, not any real distance or anything and falls a lot, but he is still going. He has some resp problems that just have come up this year. But over all he is doing good. I sure hope he looks at life the way you do and finds ways to be apart of sports and all like you have. He loves baseball, and soccer, basketball also, but really no way of him being on a reall team anymore. We still play as a family and all so the kids can have fun, but to Ian its not the real thing. I sure hope he looks at life the way you do when he gets older. Right now with him it is just more of a mental struggle on him dealing with the fact he can't do things like the other kids, and that is the hardest part of the whole SMA for him. Anyways Thank you for sharing about yourself. I like to here things like this, to here that there is those chances out there for my son when he is older. Thanks again. Missy Lemieux <iambacon@...> wrote: Hey I'm I'm 23 from Windsor, Ontario (5 mins from Detroit, Mich.), single male, I have SMA II and have never walked. I've lived in Western & Eastern Canada and England. I love to travel and meet new people and I am a Baseball and Basketball addict (Toronto). I'm at college for advertising and I work for the college basketball team as a statistician and announcer. I also coach a girls (13 & 14) softball team. I play in and am the president of a wheelchair floor hockey league in Michigan that allowed males and females aged 10+ (one player is 60) to play competitive floor hockey. I'm a movie and music addict and also like art, drawing etc. I've added my photos (wolfmanjoe25 aka Chris) Feel free to add me to any IM program: AIM: WCHLLemieux Y!: wolfmanjoe25 MSN: iambacon at gmail dot com 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 June 10, 2005 Report Share Posted June 10, 2005 Hey Chris! It's a small world! I am sure you are aware of the Canadian Electric Wheelchair Hockey Association (CEWHA), I hope you do, its been my heart and sole since it's " formal organization " in 1988. I am the " original-founding " player who inspired a fella to turn our " Mom's & Pop's " hockey league into the association it is today. I was playing floor hockey by the age of 11 which is 29 years ago and I still play! My team is the Huskies (I drew our team logo and CEWHA's logo too) I LOVE THIS SPORT! Angie Bebee- CEWHA Toronto Division Player Representative On 2005.06.10 10:28, Lemieux wrote: > Hey > > I'm I'm 23 from Windsor, Ontario (5 mins from Detroit, Mich.), > single male, I have SMA II and have never walked. I've lived in > Western & Eastern Canada and England. I love to travel and meet new > people and I am a Baseball and Basketball addict (Toronto). > > I'm at college for advertising and I work for the college basketball > team as a statistician and announcer. I also coach a girls (13 & 14) > softball team. > > I play in and am the president of a wheelchair floor hockey league in > Michigan that allowed males and females aged 10+ (one player is 60) to > play competitive floor hockey. > > I'm a movie and music addict and also like art, drawing etc. > > I've added my photos (wolfmanjoe25 aka Chris) > > Feel free to add me to any IM program: > > AIM: WCHLLemieux > Y!: wolfmanjoe25 > MSN: iambacon at gmail dot com > > > > > 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 June 10, 2005 Report Share Posted June 10, 2005 Hi Missy: I read your email and immediately thought of my son Bryce. Bryce is in the midsts of his second season of T-ball. Yes, he isn't the quickest one around the bases, but he seems to have fun - though he seems to know he can't do some of the things the other kids can - but he tries like hell! Aside from the baseball, he also rides a horse once a week at a therapeutic riding center and he loves it. I highly recommend horseback riding for anyone willing to give it a try. For Bryce in particular, it helps him tone and learn to control his hip & thigh muscles and to work on good posture (all things of particular significance to him and how SMA has affected his body). Those in chairs can ride " Chariot Style " and many kids do. Anyway, its a sport like any other - one that most supposed " normal " kids don't ever get to do - much less become proficient at it. Also, it is something where for the most part, you are equal with all other riders - SMA or not. Bryce's favorite part of his hour long lessons is the part where they get to trot & go fast! I see us involved with this for a long, long time - as it provides so many positives they can't all really be fully described. Anyway, if you have any q's about " hippotherapy " (which is the term for therapeutic horseback riding lessons)...just let me know...Mitch --- missy <ianpaul2@...> wrote: > Hi sounds like you make a lot out of your > life, and very active with things. That is great. > > I am Mom to Ian age 7.5 type 2/3. He can walk some, > not any real distance or anything and falls a lot, > but he is still going. He has some resp problems > that just have come up this year. But over all he > is doing good. I sure hope he looks at life the way > you do and finds ways to be apart of sports and all > like you have. He loves baseball, and soccer, > basketball also, but really no way of him being on a > reall team anymore. We still play as a family and > all so the kids can have fun, but to Ian its not the > real thing. I sure hope he looks at life the way > you do when he gets older. Right now with him it is > just more of a mental struggle on him dealing with > the fact he can't do things like the other kids, and > that is the hardest part of the whole SMA for him. > Anyways Thank you for sharing about yourself. I > like to here things like this, to here that there is > those chances out there for my son when he is older. > Thanks again. > Missy > > Lemieux <iambacon@...> wrote: > Hey > > I'm I'm 23 from Windsor, Ontario (5 mins from > Detroit, Mich.), > single male, I have SMA II and have never walked. > I've lived in > Western & Eastern Canada and England. I love to > travel and meet new > people and I am a Baseball and Basketball addict > (Toronto). > > I'm at college for advertising and I work for the > college basketball > team as a statistician and announcer. I also coach > a girls (13 & 14) > softball team. > > I play in and am the president of a wheelchair floor > hockey league in > Michigan that allowed males and females aged 10+ > (one player is 60) to > play competitive floor hockey. > > I'm a movie and music addict and also like art, > drawing etc. > > I've added my photos (wolfmanjoe25 aka Chris) > > Feel free to add me to any IM program: > > AIM: WCHLLemieux > Y!: wolfmanjoe25 > MSN: iambacon at gmail dot com > > > > > 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 June 28, 2006 Report Share Posted June 28, 2006 Hi, I've known about coconut oil for a while. I purchased " The Coconut Oil Miracle " and started trying some of their recipes especially the smoothies only to have my stomach get upset. Also, I can't just take a tablespoon of it or else I'll get sick. I have resorted to using small amounts of it in my drinks. I use it for cooking and have no problems. Has anyone else had this problem? Any suggestions would be helpful. Thanks Nikki Quote Link to comment Share on other sites More sharing options...
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