Guest guest Posted February 5, 2000 Report Share Posted February 5, 2000 I'm new to the list and just want to quickly introduce myself. I have 6 month old bbg triplets (who currently have stomach viruses...), one of whom (my beautiful daughter, Louisa) has DS. Although we love her dearly, the shock of the diagnosis (after umpteen " normal " ultrasounds and a cocky OB who insisted he could diagnose 90% of all ds cases via ultrasound) is still very much with us. I think it's very much a multiples issue as well, as we're reminded daily that our daughter is " different " when we compare her (unavoidably) with her brothers. There has never been a more adorable, lovable, warm child -- and we marvel at her accomplishments, and the joy she brings to our lives, every day. But we worry endlessly about her future. Incidentally, we started her on TNI at 4 months and piracetam just last week and she's been doing extremely well (hard to know if that's attributable to the supplements) -- but thankfully we had no health issues (or even prematurity) to deal with. Any feedback on this therapy? I look forward to being part of this " community " ! Sheryl, mom to Caleb, Louisa-ds & Ethan (6 mos) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2000 Report Share Posted February 6, 2000 Welcome Sheryl! You'll find both sides of the TNI issue here, so stay tuned, it also pops up! ) Glad you could make it! BTW, how'd you find us? Sara (list owner) --- Sknapp4@... wrote: > From: Sknapp4@... > > I'm new to the list and just want to quickly > introduce myself. I have 6 > month old bbg triplets (who currently have stomach > viruses...), one of whom > (my beautiful daughter, Louisa) has DS. Although we > love her dearly, the > shock of the diagnosis (after umpteen " normal " > ultrasounds and a cocky OB who > insisted he could diagnose 90% of all ds cases via > ultrasound) is still very > much with us. I think it's very much a multiples > issue as well, as we're > reminded daily that our daughter is " different " when > we compare her > (unavoidably) with her brothers. There has never > been a more adorable, > lovable, warm child -- and we marvel at her > accomplishments, and the joy she > brings to our lives, every day. But we worry > endlessly about her future. > Incidentally, we started her on TNI at 4 months and > piracetam just last week > and she's been doing extremely well (hard to know if > that's attributable to > the supplements) -- but thankfully we had no health > issues (or even > prematurity) to deal with. Any feedback on this > therapy? I look forward to > being part of this " community " ! > > Sheryl, mom to Caleb, Louisa-ds & Ethan (6 mos) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Sknapp4@... wrote: > > From: Sknapp4@... > > I'm new to the list and just want to quickly introduce myself. I have 6 > month old bbg triplets (who currently have stomach viruses...), one of whom > (my beautiful daughter, Louisa) has DS. Although we love her dearly, the > shock of the diagnosis (after umpteen " normal " ultrasounds and a cocky OB who > insisted he could diagnose 90% of all ds cases via ultrasound) is still very > much with us. I think it's very much a multiples issue as well, as we're > reminded daily that our daughter is " different " when we compare her > (unavoidably) with her brothers. There has never been a more adorable, > lovable, warm child -- and we marvel at her accomplishments, and the joy she > brings to our lives, every day. But we worry endlessly about her future. > Incidentally, we started her on TNI at 4 months and piracetam just last week > and she's been doing extremely well (hard to know if that's attributable to > the supplements) -- but thankfully we had no health issues (or even > prematurity) to deal with. Any feedback on this therapy? I look forward to > being part of this " community " ! > > Sheryl, mom to Caleb, Louisa-ds & Ethan (6 mos) > Welcome Sheryl! I'm Gail from New Jersey. I had my boy/girl twins last March. and Tara. Tara was born with Ds.They were term also. Other than colds and possibly tubes, Tara is enjoying over all good health and is on TNI, but not pirecetam.This first year is a toughy, we are just coming out of the shock and clouds ourselves! I must admit I'm adopting a new attitude for all my kids benefit, I'm accepting our situation much better, and will be talking to my pastor soon, but it's a daily process and must remind myself that I also have 2 other children besides the twins, there is more to this family than Tara having Ds!.........well, welcome, hope you grow to enjoy this list as much as I do!!!!!!!!!!!!! Gail,.......Bobby 6, Jillian 3.5, and Tara{Ds} 10.5months > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Welcome Sheryl, We have 3 children. Quinn is 3 and Sara and Maggie are 15 months old. Maggie has Down syndrome. Like Louisa, Maggie has no health difficulties. I investigated TNI and decided not to do it now. Maggie seems to be everything the supplements promise to make her. To everyone else too, Maggie is finally being evaluated for speech therapy today. I have been asking since she was 9 months and was always told she had no issues, nothing to work on, but finally I suppose she does! I am excited. I will let you know what they say. Question: I have heard people talk about having their children's cognitive abilites tested. Is this something people should do or they just do for the " heck " of it. Sometimes I think Maggie cognitive skills are fine. She imitates within three tries. Meaning, I was showing the babies how to slap me five...Sara did it the first time and it took Maggie three times of me holding her fat little hand but now she does it all on her own. She watched Sara use a spoon a couple of times and now she feeds herself fine with the spoon. All this sounds good, huh? I am so happy that Maggie has a twin to show her things and to be with...it is awesome. Not that we aren't fine with Mags having Ds but having Sara too makes it all " better " ...that makes sense right? Re: Digest Number 205 From: GVanHouten <rjvh@...> Sknapp4@... wrote: > > From: Sknapp4@... > > I'm new to the list and just want to quickly introduce myself. I have 6 > month old bbg triplets (who currently have stomach viruses...), one of whom > (my beautiful daughter, Louisa) has DS. Although we love her dearly, the > shock of the diagnosis (after umpteen " normal " ultrasounds and a cocky OB who > insisted he could diagnose 90% of all ds cases via ultrasound) is still very > much with us. I think it's very much a multiples issue as well, as we're > reminded daily that our daughter is " different " when we compare her > (unavoidably) with her brothers. There has never been a more adorable, > lovable, warm child -- and we marvel at her accomplishments, and the joy she > brings to our lives, every day. But we worry endlessly about her future. > Incidentally, we started her on TNI at 4 months and piracetam just last week > and she's been doing extremely well (hard to know if that's attributable to > the supplements) -- but thankfully we had no health issues (or even > prematurity) to deal with. Any feedback on this therapy? I look forward to > being part of this " community " ! > > Sheryl, mom to Caleb, Louisa-ds & Ethan (6 mos) > Welcome Sheryl! I'm Gail from New Jersey. I had my boy/girl twins last March. and Tara. Tara was born with Ds.They were term also. Other than colds and possibly tubes, Tara is enjoying over all good health and is on TNI, but not pirecetam.This first year is a toughy, we are just coming out of the shock and clouds ourselves! I must admit I'm adopting a new attitude for all my kids benefit, I'm accepting our situation much better, and will be talking to my pastor soon, but it's a daily process and must remind myself that I also have 2 other children besides the twins, there is more to this family than Tara having Ds!.........well, welcome, hope you grow to enjoy this list as much as I do!!!!!!!!!!!!! Gail,.......Bobby 6, Jillian 3.5, and Tara{Ds} 10.5months > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2000 Report Share Posted February 10, 2000 Hello and welcome Sheryl and family, My name is Mabel and mom of a set of triplets too. Carolina, Cristian and a-ds they are almost 11 months. Cristian is the boy. Sorry I can't help you with your question. I wanted to say welcome to you and your family and tells you this is a great list with lovely and caring people. Mabel, mom to Carolina, Crsitain, a-ds >From: Sknapp4@... >Reply-Multiples-DSonelist >Multiples-DSonelist >Subject: Re: Digest Number 205 >Date: Sat, 5 Feb 2000 11:53:48 EST > >I'm new to the list and just want to quickly introduce myself. I have 6 >month old bbg triplets (who currently have stomach viruses...), one of whom >(my beautiful daughter, Louisa) has DS. Although we love her dearly, the >shock of the diagnosis (after umpteen " normal " ultrasounds and a cocky OB >who >insisted he could diagnose 90% of all ds cases via ultrasound) is still >very >much with us. I think it's very much a multiples issue as well, as we're >reminded daily that our daughter is " different " when we compare her >(unavoidably) with her brothers. There has never been a more adorable, >lovable, warm child -- and we marvel at her accomplishments, and the joy >she >brings to our lives, every day. But we worry endlessly about her future. >Incidentally, we started her on TNI at 4 months and piracetam just last >week >and she's been doing extremely well (hard to know if that's attributable to >the supplements) -- but thankfully we had no health issues (or even >prematurity) to deal with. Any feedback on this therapy? I look forward >to >being part of this " community " ! > >Sheryl, mom to Caleb, Louisa-ds & Ethan (6 mos) ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 In a message dated 3/15/00 3:53:44 PM Pacific Standard Time, onelist writes: << << I was told THEN to ride bikes! - the thought was it would strengthen my legs. While I don't know if it does, I do like riding bikes, although, just like everything else, I need to pace myself. >> I believe this is another very individual matter. Some CMTers can and may benefit, others can't or won't benefit, or may be harmed by doing it. >> Jeanie here; I am one of those individuals that cannot ride a bike. I haven't been on a bike for at least 10 years because it would make my legs soo tired I couldn't even stand afterwards. And I would only go one block. When I was a child, teenager I could and did ride bike, I loved it. It didn't bother me then. When your disability progresses too a certain point alot of us aren't able too continue dooing what we could do the day before. VERY FRUSTRATING!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 In a message dated 3/15/00 6:11:17 PM Pacific Standard Time, Moonglow21@... writes: << Jeanie here; I am one of those individuals that cannot ride a bike. I haven't been on a bike for at least 10 years because it would make my legs soo tired I couldn't even stand afterwards. And I would only go one block. When I was a child, teenager I could and did ride bike, I loved it. It didn't bother me then. When your disability progresses too a certain point alot of us aren't able too continue dooing what we could do the day before. VERY FRUSTRATING!!!! >> DITTO again Jeanie, Just add my name and you've got my story too. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 Please can you send me information so I can change from the digest to the regular list? TIA Louise @ DanLouFi@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 In a message dated 6/1/00 5:11:54 AM Pacific Daylight Time, egroups writes: << Gee, I thought it was like KLEENEX and REYNOLDS WRAP - generic terms!! Sara >> heheh.....Sara......we usually just call it " Kotex " ......... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 I have 4 sisters and we always called them 'goodies' Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2000 Report Share Posted June 6, 2000 , Have you tried using video to show how it's done at home. We tried this with our PPCD teacher, she was very grateful, however I'm not sure how much she implemented in the classroom. The video's Carbone uses in his presentations are so effective and really clear up alot of questions without lengthy wordy explainations. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Dear : You can also try things like gum, life savers, Gatorade, Powerade, or something like Ensure. Anything that gets some sugar released into your blood stream from your muscles that are storing them. If you get a small amount down before you even get up from bed, it may help. My wife used to keep the sugar miniwheats in a bag and eat some of those before she got up. The only problem was that we have a dog, (who doesn't think she's a dog), and she insists on sharing with her. It was hard to convince her that this for a health problem and not just breakfast, or a snack. We tried telling her she didn't have HCV, but, she ignored the reference. She's a Siberian Husky, and they are very intelligent. When they want to get your attention, they don't bark like most dogs, but have a singing type bark, that is high pitched and hard to ignore. So, as long as you gave her some she shared with my wife. But, it worked for quieting the dog and it helped my wife. Maybe some others have other suggestions that have worked for them.The heat is real difficult, and fits in with the sugar and blood pressure aspects. Since, as we sweat we increase our need for sugars and our blood pressure also needs to respond, trying to prevent the symptoms before they occur is usually best. Since you live in Texas, I am sure you are well versed in the heat, and the HCV only makes it worse. But, you can probably spend some time in a Mall or a place that has A/C, and your doctor should be able to write a letter stating that you must have an air conditioned environment. That may help some. A year from now, when you are doing well, this will only be a small memory. Stay in touch. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Dear : You can also try things like gum, life savers, Gatorade, Powerade, or something like Ensure. Anything that gets some sugar released into your blood stream from your muscles that are storing them. If you get a small amount down before you even get up from bed, it may help. My wife used to keep the sugar miniwheats in a bag and eat some of those before she got up. The only problem was that we have a dog, (who doesn't think she's a dog), and she insists on sharing with her. It was hard to convince her that this for a health problem and not just breakfast, or a snack. We tried telling her she didn't have HCV, but, she ignored the reference. She's a Siberian Husky, and they are very intelligent. When they want to get your attention, they don't bark like most dogs, but have a singing type bark, that is high pitched and hard to ignore. So, as long as you gave her some she shared with my wife. But, it worked for quieting the dog and it helped my wife. Maybe some others have other suggestions that have worked for them.The heat is real difficult, and fits in with the sugar and blood pressure aspects. Since, as we sweat we increase our need for sugars and our blood pressure also needs to respond, trying to prevent the symptoms before they occur is usually best. Since you live in Texas, I am sure you are well versed in the heat, and the HCV only makes it worse. But, you can probably spend some time in a Mall or a place that has A/C, and your doctor should be able to write a letter stating that you must have an air conditioned environment. That may help some. A year from now, when you are doing well, this will only be a small memory. Stay in touch. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 good ideas Marty thanks for the suggestions I try to keep some Boost generic around but didn't think about drinking it that early. Yeah we have two shitzus who do not realize they have 4 legs instead of two haha. I call them my walking rugs. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 good ideas Marty thanks for the suggestions I try to keep some Boost generic around but didn't think about drinking it that early. Yeah we have two shitzus who do not realize they have 4 legs instead of two haha. I call them my walking rugs. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Dear Sara: The blood work, including viral loads, are fairly standardized, unless you have other problems. Your various blood levels may takes weeks or months before getting back to normal, and, depending on many other things, it can influence how these change. Stress, weather, hormones, menstrual cycles, diet, etc., can all effect your levels. The fact that your provider did not order, or does not want to repeat the viral loads, may have many reasons, and not all are what I consider, correct. If we want to assume the best case scenario, maybe he/she forgot. The next excuse is that maybe they are using the cookbook approach and do not know any better. These are the " nice " reasons, and if it does not fall in that realm, we get to the self serving reasons. If you are part of a HMO, there are 2 things that are usually true. Either the HMO is dictating what can be done and the frequency. If that is true, there are ways of overriding them, and you may need to do so. There is also another, more self-serving reason that may be true. If your provider is under some type of " official " or " unofficial " payment schedule. This is usually referred to as a capitation, which, is not always bad in theory. This is a system where your provider gets a fee for everyone enrolled in their office. Depending on the degree of the capitation, it can make a provider practice in ways that are not always in your best interests. Some providers actually try to do what they feel is best, no matter what the cost, but, others are not as " dedicated " . In strict capitation, out of the monthly amount for each patient, is reduced by an amount or percentage for all expenses incurred for that patient. For example, if the physician orders expensive tests, they may reduce their monthly amount. This is also true for some plans when referred to a specialist. Specialists get paid more for a visit, and they usually are expected to do more sophisticated testing. The only way your " primary " provider has in controlling these costs is to limit their lack of control over what is done. Studies have proven that, in many cases, many problems can be handled less expensively, and just as well, if kept by your primary provider. For example, if a patient is sent to a cardiologist, or urologist, and 10 visits are allowed, statistically, the specialist will use all of those 10 visits, even if the same treatment could be done in 5. This drastically increases the costs of health care, and is where the insurance companies are trying to crack down. That is not to say that all referrals or tests are over used. If you are in this type of situation, then your provider may not order any expensive tests, because it will go against them. If that's the case, then you need to push your provider to get what should be done. The viral loads are recommended to be reviewed at the end of treatment, 4 weeks later, and 5 months after that. Some may do them more often, and as long as they can document the why's, there is usually no problems. But, if something is not being done, that should, strictly because it increases the costs, that is, in my opinion, grossly wrong, and should be fought. The other issue is whether, if your viral loads are up, or something else is going on, other treatments might need to be considered. If you have developed quasispecies, then straight high dose interferon may be needed. If your blood counts are off, and it is from another cause, then that cause needs to be addressed. On the other hand, if the counts are low, but, are acceptable, as well as getting back to normal, and the viral count is undetectable, it needs to be documented to show that you have responded. The viral counts, at this point are probably the most important numbers you can have. They are only affected by changes in the viral load, and nothing else. So, if you remain undetectable, and some of your other labs are off, but, getting better, you do nothing. In general, your LFTs, blood cell counts, etc., all become unimportant at this stage, for the HCV, because it is expected that these counts will be low, and may take some time to improve and catch up. Also, there are too many other factors that can effect each count, and if you are not going to do anything, then why do the labs, especially those that are expected to be off. I know I rambled, but, I hope this gives a better picture. If not, let me know. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Dear Sara: The blood work, including viral loads, are fairly standardized, unless you have other problems. Your various blood levels may takes weeks or months before getting back to normal, and, depending on many other things, it can influence how these change. Stress, weather, hormones, menstrual cycles, diet, etc., can all effect your levels. The fact that your provider did not order, or does not want to repeat the viral loads, may have many reasons, and not all are what I consider, correct. If we want to assume the best case scenario, maybe he/she forgot. The next excuse is that maybe they are using the cookbook approach and do not know any better. These are the " nice " reasons, and if it does not fall in that realm, we get to the self serving reasons. If you are part of a HMO, there are 2 things that are usually true. Either the HMO is dictating what can be done and the frequency. If that is true, there are ways of overriding them, and you may need to do so. There is also another, more self-serving reason that may be true. If your provider is under some type of " official " or " unofficial " payment schedule. This is usually referred to as a capitation, which, is not always bad in theory. This is a system where your provider gets a fee for everyone enrolled in their office. Depending on the degree of the capitation, it can make a provider practice in ways that are not always in your best interests. Some providers actually try to do what they feel is best, no matter what the cost, but, others are not as " dedicated " . In strict capitation, out of the monthly amount for each patient, is reduced by an amount or percentage for all expenses incurred for that patient. For example, if the physician orders expensive tests, they may reduce their monthly amount. This is also true for some plans when referred to a specialist. Specialists get paid more for a visit, and they usually are expected to do more sophisticated testing. The only way your " primary " provider has in controlling these costs is to limit their lack of control over what is done. Studies have proven that, in many cases, many problems can be handled less expensively, and just as well, if kept by your primary provider. For example, if a patient is sent to a cardiologist, or urologist, and 10 visits are allowed, statistically, the specialist will use all of those 10 visits, even if the same treatment could be done in 5. This drastically increases the costs of health care, and is where the insurance companies are trying to crack down. That is not to say that all referrals or tests are over used. If you are in this type of situation, then your provider may not order any expensive tests, because it will go against them. If that's the case, then you need to push your provider to get what should be done. The viral loads are recommended to be reviewed at the end of treatment, 4 weeks later, and 5 months after that. Some may do them more often, and as long as they can document the why's, there is usually no problems. But, if something is not being done, that should, strictly because it increases the costs, that is, in my opinion, grossly wrong, and should be fought. The other issue is whether, if your viral loads are up, or something else is going on, other treatments might need to be considered. If you have developed quasispecies, then straight high dose interferon may be needed. If your blood counts are off, and it is from another cause, then that cause needs to be addressed. On the other hand, if the counts are low, but, are acceptable, as well as getting back to normal, and the viral count is undetectable, it needs to be documented to show that you have responded. The viral counts, at this point are probably the most important numbers you can have. They are only affected by changes in the viral load, and nothing else. So, if you remain undetectable, and some of your other labs are off, but, getting better, you do nothing. In general, your LFTs, blood cell counts, etc., all become unimportant at this stage, for the HCV, because it is expected that these counts will be low, and may take some time to improve and catch up. Also, there are too many other factors that can effect each count, and if you are not going to do anything, then why do the labs, especially those that are expected to be off. I know I rambled, but, I hope this gives a better picture. If not, let me know. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Dear Sara: The blood work, including viral loads, are fairly standardized, unless you have other problems. Your various blood levels may takes weeks or months before getting back to normal, and, depending on many other things, it can influence how these change. Stress, weather, hormones, menstrual cycles, diet, etc., can all effect your levels. The fact that your provider did not order, or does not want to repeat the viral loads, may have many reasons, and not all are what I consider, correct. If we want to assume the best case scenario, maybe he/she forgot. The next excuse is that maybe they are using the cookbook approach and do not know any better. These are the " nice " reasons, and if it does not fall in that realm, we get to the self serving reasons. If you are part of a HMO, there are 2 things that are usually true. Either the HMO is dictating what can be done and the frequency. If that is true, there are ways of overriding them, and you may need to do so. There is also another, more self-serving reason that may be true. If your provider is under some type of " official " or " unofficial " payment schedule. This is usually referred to as a capitation, which, is not always bad in theory. This is a system where your provider gets a fee for everyone enrolled in their office. Depending on the degree of the capitation, it can make a provider practice in ways that are not always in your best interests. Some providers actually try to do what they feel is best, no matter what the cost, but, others are not as " dedicated " . In strict capitation, out of the monthly amount for each patient, is reduced by an amount or percentage for all expenses incurred for that patient. For example, if the physician orders expensive tests, they may reduce their monthly amount. This is also true for some plans when referred to a specialist. Specialists get paid more for a visit, and they usually are expected to do more sophisticated testing. The only way your " primary " provider has in controlling these costs is to limit their lack of control over what is done. Studies have proven that, in many cases, many problems can be handled less expensively, and just as well, if kept by your primary provider. For example, if a patient is sent to a cardiologist, or urologist, and 10 visits are allowed, statistically, the specialist will use all of those 10 visits, even if the same treatment could be done in 5. This drastically increases the costs of health care, and is where the insurance companies are trying to crack down. That is not to say that all referrals or tests are over used. If you are in this type of situation, then your provider may not order any expensive tests, because it will go against them. If that's the case, then you need to push your provider to get what should be done. The viral loads are recommended to be reviewed at the end of treatment, 4 weeks later, and 5 months after that. Some may do them more often, and as long as they can document the why's, there is usually no problems. But, if something is not being done, that should, strictly because it increases the costs, that is, in my opinion, grossly wrong, and should be fought. The other issue is whether, if your viral loads are up, or something else is going on, other treatments might need to be considered. If you have developed quasispecies, then straight high dose interferon may be needed. If your blood counts are off, and it is from another cause, then that cause needs to be addressed. On the other hand, if the counts are low, but, are acceptable, as well as getting back to normal, and the viral count is undetectable, it needs to be documented to show that you have responded. The viral counts, at this point are probably the most important numbers you can have. They are only affected by changes in the viral load, and nothing else. So, if you remain undetectable, and some of your other labs are off, but, getting better, you do nothing. In general, your LFTs, blood cell counts, etc., all become unimportant at this stage, for the HCV, because it is expected that these counts will be low, and may take some time to improve and catch up. Also, there are too many other factors that can effect each count, and if you are not going to do anything, then why do the labs, especially those that are expected to be off. I know I rambled, but, I hope this gives a better picture. If not, let me know. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Dear Sara: The blood work, including viral loads, are fairly standardized, unless you have other problems. Your various blood levels may takes weeks or months before getting back to normal, and, depending on many other things, it can influence how these change. Stress, weather, hormones, menstrual cycles, diet, etc., can all effect your levels. The fact that your provider did not order, or does not want to repeat the viral loads, may have many reasons, and not all are what I consider, correct. If we want to assume the best case scenario, maybe he/she forgot. The next excuse is that maybe they are using the cookbook approach and do not know any better. These are the " nice " reasons, and if it does not fall in that realm, we get to the self serving reasons. If you are part of a HMO, there are 2 things that are usually true. Either the HMO is dictating what can be done and the frequency. If that is true, there are ways of overriding them, and you may need to do so. There is also another, more self-serving reason that may be true. If your provider is under some type of " official " or " unofficial " payment schedule. This is usually referred to as a capitation, which, is not always bad in theory. This is a system where your provider gets a fee for everyone enrolled in their office. Depending on the degree of the capitation, it can make a provider practice in ways that are not always in your best interests. Some providers actually try to do what they feel is best, no matter what the cost, but, others are not as " dedicated " . In strict capitation, out of the monthly amount for each patient, is reduced by an amount or percentage for all expenses incurred for that patient. For example, if the physician orders expensive tests, they may reduce their monthly amount. This is also true for some plans when referred to a specialist. Specialists get paid more for a visit, and they usually are expected to do more sophisticated testing. The only way your " primary " provider has in controlling these costs is to limit their lack of control over what is done. Studies have proven that, in many cases, many problems can be handled less expensively, and just as well, if kept by your primary provider. For example, if a patient is sent to a cardiologist, or urologist, and 10 visits are allowed, statistically, the specialist will use all of those 10 visits, even if the same treatment could be done in 5. This drastically increases the costs of health care, and is where the insurance companies are trying to crack down. That is not to say that all referrals or tests are over used. If you are in this type of situation, then your provider may not order any expensive tests, because it will go against them. If that's the case, then you need to push your provider to get what should be done. The viral loads are recommended to be reviewed at the end of treatment, 4 weeks later, and 5 months after that. Some may do them more often, and as long as they can document the why's, there is usually no problems. But, if something is not being done, that should, strictly because it increases the costs, that is, in my opinion, grossly wrong, and should be fought. The other issue is whether, if your viral loads are up, or something else is going on, other treatments might need to be considered. If you have developed quasispecies, then straight high dose interferon may be needed. If your blood counts are off, and it is from another cause, then that cause needs to be addressed. On the other hand, if the counts are low, but, are acceptable, as well as getting back to normal, and the viral count is undetectable, it needs to be documented to show that you have responded. The viral counts, at this point are probably the most important numbers you can have. They are only affected by changes in the viral load, and nothing else. So, if you remain undetectable, and some of your other labs are off, but, getting better, you do nothing. In general, your LFTs, blood cell counts, etc., all become unimportant at this stage, for the HCV, because it is expected that these counts will be low, and may take some time to improve and catch up. Also, there are too many other factors that can effect each count, and if you are not going to do anything, then why do the labs, especially those that are expected to be off. I know I rambled, but, I hope this gives a better picture. If not, let me know. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Dear Virginia: I hope a liver becomes available for you soon. If all your other organs and levels are remaining OK, then, time is not as important because you are stable. It sounds like you are hanging in there, and have a supporting, loving family, which all contributes to staying as well as you can. But, don't forget that we are also a different part of your family and want to help if we can. Hopefully, you day is just a short time a way, and then this nightmare will be over. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Dear Virginia: I hope a liver becomes available for you soon. If all your other organs and levels are remaining OK, then, time is not as important because you are stable. It sounds like you are hanging in there, and have a supporting, loving family, which all contributes to staying as well as you can. But, don't forget that we are also a different part of your family and want to help if we can. Hopefully, you day is just a short time a way, and then this nightmare will be over. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2000 Report Share Posted July 29, 2000 Hey Marty, Was wondering if you have any articles around that suggest that you should be on treatment for 12 months versus 6 i am now nearing my 6 month mark and wuld like to be ready to approach my doctor who at the beginning said 6 months.. don't know if it would hurt to go offf for that month and see what the viral load is then restart if he would consider it. and probably will have to pay out of pockett for the last 6 months anyway but feel like it is worth the chance. Also interested in getting around HMOs haven't had trouble yet but anticapate it when its coming out of my pockett wonder if they will pay for blood testing then? Thank You for all the help you give people Suzy ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Suzy.. what is your genotype? and how do you fit into the " 5 items " not sure what to call em, to help determine length of treatment and possible response? (liver biopsy, age (under 40), gender, low pcr, genotype) alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Suzy.. what is your genotype? and how do you fit into the " 5 items " not sure what to call em, to help determine length of treatment and possible response? (liver biopsy, age (under 40), gender, low pcr, genotype) alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 HI MY NAME IS DIANE JOHNSON IAM WONDER IF THERE ARE ANY SCHOOL THAT DEAL WITH EMPHASIS ON APRAXIA SPEECH ALSO EXPLAIN CONGENTIVE SPEECH THATS IN NEW YORK AREA THANK Y0U Quote Link to comment Share on other sites More sharing options...
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