Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 ML* BiPap her now to reduce complication in the future...i'm thankful for my trach--makes life much better Jodi ________________________________________________________________________ Send your friends personalized video messages! Sign up for a FREE Juno account and start sending Video Mail today! http://track.juno.com/s/lc?u=http://account.juno.com/s/cart?action=addToCart%26o\ fferId=freeVideo%26sep=ssc%26group=freeVideo%26mailType=video%26refcd=JUEML0707V\ DO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 I have an 11 year old daughter who has been using bipap since she was 4. Most of the time doctors resist putting kids on them until it's absolutely necessary, so if your daughter's sleep study is showing a need then you might want to really consider it. That being said... Whether to use any of these pieces of equipment is a completely personal decision. You have to choose what is right for YOUR child and YOUR family. We wouldn't give up h's bipap for anything because she's been so much healthier since she began using it, but I also know families who are very uncomfortable with the idea of using it. I know many families who only choose to use bipap when their child is sick. Like I said, it's a personal decision. My personal opinion is this: If a child is having chronic respiratory infections, seems tired or easily tired during the day, or seems to be losing strengths that they once had, then a bipap is probably a good idea. If you want to talk to more parents who have chosen this route for their children you might want to check out www.smasupport.com - There are many parents who have made the choice for their children to use bipap there. Also, I'd like to say that h refuses to go to sleep without her bipap. She's completely comfortable with it and knows it helps her. She ASKS for it if she's not feeling well!!!!! Good luck with your decision Love and Hugs Jeni BiPap Machine Hi, My daughter age 8 (SMA II) was told that she may need to use the BiPap machine at night. However, I find that she is still very active and alert day time and don't seem to be not having enough sleep or not sleep well as what the doctor suggested after looking at her sleep study report. May I know is there anything else we can do to verify or check if she really need the BiPap machine now ? We really don't wish to put her on the BiPap machine so early if possible. Can someone please help. Tqvm. ML ------------ --------- --------- --- Need a vacation? Get great deals to amazing places on Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 i have been using the bipap for around 6 months and i love ut it has changed my life dramaticly i will now not even have a nap without using it laura Jenifer Woody <mom2armybratz@...> wrote: I have an 11 year old daughter who has been using bipap since she was 4. Most of the time doctors resist putting kids on them until it's absolutely necessary, so if your daughter's sleep study is showing a need then you might want to really consider it. That being said... Whether to use any of these pieces of equipment is a completely personal decision. You have to choose what is right for YOUR child and YOUR family. We wouldn't give up h's bipap for anything because she's been so much healthier since she began using it, but I also know families who are very uncomfortable with the idea of using it. I know many families who only choose to use bipap when their child is sick. Like I said, it's a personal decision. My personal opinion is this: If a child is having chronic respiratory infections, seems tired or easily tired during the day, or seems to be losing strengths that they once had, then a bipap is probably a good idea. If you want to talk to more parents who have chosen this route for their children you might want to check out www.smasupport.com - There are many parents who have made the choice for their children to use bipap there. Also, I'd like to say that h refuses to go to sleep without her bipap. She's completely comfortable with it and knows it helps her. She ASKS for it if she's not feeling well!!!!! Good luck with your decision Love and Hugs Jeni BiPap Machine Hi, My daughter age 8 (SMA II) was told that she may need to use the BiPap machine at night. However, I find that she is still very active and alert day time and don't seem to be not having enough sleep or not sleep well as what the doctor suggested after looking at her sleep study report. May I know is there anything else we can do to verify or check if she really need the BiPap machine now ? We really don't wish to put her on the BiPap machine so early if possible. Can someone please help. Tqvm. ML ------------ --------- --------- --- Need a vacation? Get great deals to amazing places on Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 I am using a bi-pap on most nights; I started last September but it has taken me a long time to get used to it. It does not take everyone as long as me to get used to it. I definitely think it is working; I have more energy and more mental clarity as well. I am also experencing less anxiety than I used to, although I don't know if that is becuase of the bi-pap. When I went in for breathing tests in July, my counts were the highest they have ever been in the three years that I've been seeing this doctor. I had also gained a pound and a half. My doctor was thrilled. So was I. So even though there are still nights when its hard for me to wear it, I try not to take it off. Its a very different experience for different people. Some people adjust to it right away. I don't adjust to anything right away, LOL. :-) Lori G. can verify that. :-) Dina --- as if <xx_laura_s_xx@...> wrote: > i have been using the bipap for around 6 months and > i love ut it has changed my life dramaticly i will > now not even have a nap without using it > > laura > > Jenifer Woody <mom2armybratz@...> wrote: > I have an 11 year old daughter who has > been using bipap since she was 4. Most of the time > doctors resist putting kids on them until it's > absolutely necessary, so if your daughter's sleep > study is showing a need then you might want to > really consider it. > That being said... > Whether to use any of these pieces of equipment is a > completely personal decision. You have to choose > what is right for YOUR child and YOUR family. We > wouldn't give up h's bipap for anything because > she's been so much healthier since she began using > it, but I also know families who are very > uncomfortable with the idea of using it. I know many > families who only choose to use bipap when their > child is sick. Like I said, it's a personal > decision. > My personal opinion is this: If a child is having > chronic respiratory infections, seems tired or > easily tired during the day, or seems to be losing > strengths that they once had, then a bipap is > probably a good idea. > If you want to talk to more parents who have chosen > this route for their children you might want to > check out www.smasupport.com - There are many > parents who have made the choice for their children > to use bipap there. > Also, I'd like to say that h refuses to go to > sleep without her bipap. She's completely > comfortable with it and knows it helps her. She ASKS > for it if she's not feeling well!!!!! > Good luck with your decision > > Love and Hugs > Jeni > > > BiPap Machine > > Hi, > My daughter age 8 (SMA II) was told that she may > need to use the BiPap machine at night. However, I > find that she is still very active and alert day > time and don't seem to be not having enough sleep or > not sleep well as what the doctor suggested after > looking at her sleep study report. May I know is > there anything else we can do to verify or check if > she really need the BiPap machine now ? We really > don't wish to put her on the BiPap machine so early > if possible. Can someone please help. Tqvm. ML > > ------------ --------- --------- --- > Need a vacation? Get great deals to amazing places > on Travel. > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > > > > > > --------------------------------- > For ideas on reducing your carbon footprint visit > For Good this month. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Luggage? GPS? Comic books? Check out fitting gifts for grads at Search http://search./search?fr=oni_on_mail & p=graduation+gifts & cs=bz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Hi Dina, I cannot get used to it. I keep trying but can only tolerate it for about 45 min. to an hour. I don't think with such little use it will give me more energy and mental clarity and everything wonderful it is said to do huh? Dina Abramson <dinaa68@...> wrote: I am using a bi-pap on most nights; I started last September but it has taken me a long time to get used to it. It does not take everyone as long as me to get used to it. I definitely think it is working; I have more energy and more mental clarity as well. I am also experencing less anxiety than I used to, although I don't know if that is becuase of the bi-pap. When I went in for breathing tests in July, my counts were the highest they have ever been in the three years that I've been seeing this doctor. I had also gained a pound and a half. My doctor was thrilled. So was I. So even though there are still nights when its hard for me to wear it, I try not to take it off. Its a very different experience for different people. Some people adjust to it right away. I don't adjust to anything right away, LOL. :-) Lori G. can verify that. :-) Dina --- as if wrote: > i have been using the bipap for around 6 months and > i love ut it has changed my life dramaticly i will > now not even have a nap without using it > > laura > > Jenifer Woody wrote: > I have an 11 year old daughter who has > been using bipap since she was 4. Most of the time > doctors resist putting kids on them until it's > absolutely necessary, so if your daughter's sleep > study is showing a need then you might want to > really consider it. > That being said... > Whether to use any of these pieces of equipment is a > completely personal decision. You have to choose > what is right for YOUR child and YOUR family. We > wouldn't give up h's bipap for anything because > she's been so much healthier since she began using > it, but I also know families who are very > uncomfortable with the idea of using it. I know many > families who only choose to use bipap when their > child is sick. Like I said, it's a personal > decision. > My personal opinion is this: If a child is having > chronic respiratory infections, seems tired or > easily tired during the day, or seems to be losing > strengths that they once had, then a bipap is > probably a good idea. > If you want to talk to more parents who have chosen > this route for their children you might want to > check out www.smasupport.com - There are many > parents who have made the choice for their children > to use bipap there. > Also, I'd like to say that h refuses to go to > sleep without her bipap. She's completely > comfortable with it and knows it helps her. She ASKS > for it if she's not feeling well!!!!! > Good luck with your decision > > Love and Hugs > Jeni > > > BiPap Machine > > Hi, > My daughter age 8 (SMA II) was told that she may > need to use the BiPap machine at night. However, I > find that she is still very active and alert day > time and don't seem to be not having enough sleep or > not sleep well as what the doctor suggested after > looking at her sleep study report. May I know is > there anything else we can do to verify or check if > she really need the BiPap machine now ? We really > don't wish to put her on the BiPap machine so early > if possible. Can someone please help. Tqvm. ML > > ------------ --------- --------- --- > Need a vacation? Get great deals to amazing places > on Travel. > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > > > > > > --------------------------------- > For ideas on reducing your carbon footprint visit > For Good this month. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Luggage? GPS? Comic books? Check out fitting gifts for grads at Search http://search./search?fr=oni_on_mail & p=graduation+gifts & cs=bz 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 August 15, 2007 Report Share Posted August 15, 2007 Verified. BiPap Machine > > Hi, > My daughter age 8 (SMA II) was told that she may > need to use the BiPap machine at night. However, I > find that she is still very active and alert day > time and don't seem to be not having enough sleep or > not sleep well as what the doctor suggested after > looking at her sleep study report. May I know is > there anything else we can do to verify or check if > she really need the BiPap machine now ? We really > don't wish to put her on the BiPap machine so early > if possible. Can someone please help. Tqvm. ML > > ------------ --------- --------- --- > Need a vacation? Get great deals to amazing places > on Travel. > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > > > > > > ------------ --------- --------- --- > For ideas on reducing your carbon footprint visit > For Good this month. > > [Non-text portions of this message have been > removed] > > ____________ _________ _________ _________ _________ _________ _ Luggage? GPS? Comic books? Check out fitting gifts for grads at Search http://search. / search?fr= oni_on_mail & p=graduation+ gifts & cs= bz ________________________________________________________________________________\ ____ Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when. http://tv./collections/222 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 My daughter (age 3, TypeI/II) has been using it since she was one, beginning when she had her first bout of pneumonia. She adapted pretty quickly. I can understand why you would be hesitant to use it - we resisted at first because it feels like you're accepting that your child's SMA has got worse or something. BUT, having used it for 18 months, we only wish that we'd started sooner. It has helped to expand Alice's ribcage, if only a little, and it has prevented at least two intubations. One point to consider is that adapting to BiPap (as with anything) may be easier when a child is younger. Perhaps you could start by using it only when she has a cold. Cheers, , Tokyo 2007/8/15, Jenifer Woody <mom2armybratz@...>: > > > I have an 11 year old daughter who has been using bipap since she was 4. > Most of the time doctors resist putting kids on them until it's absolutely > necessary, so if your daughter's sleep study is showing a need then you > might want to really consider it. > That being said... > Whether to use any of these pieces of equipment is a completely personal > decision. You have to choose what is right for YOUR child and YOUR family. > We wouldn't give up h's bipap for anything because she's been so much > healthier since she began using it, but I also know families who are very > uncomfortable with the idea of using it. I know many families who only > choose to use bipap when their child is sick. Like I said, it's a personal > decision. > My personal opinion is this: If a child is having chronic respiratory > infections, seems tired or easily tired during the day, or seems to be > losing strengths that they once had, then a bipap is probably a good idea. > If you want to talk to more parents who have chosen this route for their > children you might want to check out www.smasupport.com - There are many > parents who have made the choice for their children to use bipap there. > Also, I'd like to say that h refuses to go to sleep without her bipap. > She's completely comfortable with it and knows it helps her. She ASKS for it > if she's not feeling well!!!!! > Good luck with your decision > > Love and Hugs > Jeni > > > BiPap Machine > > Hi, > My daughter age 8 (SMA II) was told that she may need to use the BiPap > machine at night. However, I find that she is still very active and alert > day time and don't seem to be not having enough sleep or not sleep well as > what the doctor suggested after looking at her sleep study report. May I > know is there anything else we can do to verify or check if she really need > the BiPap machine now ? We really don't wish to put her on the BiPap machine > so early if possible. Can someone please help. Tqvm. ML > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 I knew you would. :-) --- Lori G <lorig713@...> wrote: > Verified. > > > BiPap Machine > > > > Hi, > > My daughter age 8 (SMA II) was told that she may > > need to use the BiPap machine at night. However, I > > find that she is still very active and alert day > > time and don't seem to be not having enough sleep > or > > not sleep well as what the doctor suggested after > > looking at her sleep study report. May I know is > > there anything else we can do to verify or check > if > > she really need the BiPap machine now ? We really > > don't wish to put her on the BiPap machine so > early > > if possible. Can someone please help. Tqvm. ML > > > > ------------ --------- --------- --- > > Need a vacation? Get great deals to amazing places > > on Travel. > > > > [Non-text portions of this message have been > > removed] > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > ------------ --------- --------- --- > > For ideas on reducing your carbon footprint visit > > For Good this month. > > > > [Non-text portions of this message have been > > removed] > > > > > > ____________ _________ _________ _________ _________ > _________ _ > Luggage? GPS? Comic books? > Check out fitting gifts for grads at Search > http://search. / search?fr= oni_on_mail & > p=graduation+ gifts & cs= bz > > > > > > ________________________________________________________________________________\ ____ > Sick sense of humor? Visit TV's > Comedy with an Edge to see what's on, when. > http://tv./collections/222 > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games. http://sims./ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 I definitely understand your frustration Joy. How many months have you been working at it? I have been working at it for nearly a year, and I'm still not using it all night every night. I think if you work your way up to even two or three hours a night, it would be better than not using it all. I noticed a change in my energy when I was only using it for a few hours even just a few times a week. I have been very scared of masks on my face for years, and I was very upset when the nasal pillows did not work for me, and I had to switch to a face mask. I didn't think I could do it. But over time it did get easier. One thing I did was start out with the mask over my face but not latched. I would hold it on my face until I started to fall asleep. If you don't have arm strength, this may not be an option for you. But that is one way I became more accustomed to it. After practicing for awhile like that, I would start latching it just for a few minutes at a time, and work my way up. Another thing I did to practice was to wear it during the day. If I took a nap, or even just layed down to rest in the afternoon, I would wear it. It made me less nervous to nap with it during the day than to sleep with it at night. I hope this helps. Dina --- Joy <j0yeuxx@...> wrote: > Hi Dina, > I cannot get used to it. I keep trying but can > only tolerate it for about 45 min. to an hour. > I don't think with such little use it will give me > more energy and mental clarity and everything > wonderful it is said to do huh? > > > Dina Abramson <dinaa68@...> wrote: > I am using a bi-pap on most nights; I started last > September but it has taken me a long time to get > used > to it. It does not take everyone as long as me to > get > used to it. I definitely think it is working; I have > more energy and more mental clarity as well. I am > also > experencing less anxiety than I used to, although I > don't know if that is becuase of the bi-pap. When I > went in for breathing tests in July, my counts were > the highest they have ever been in the three years > that I've been seeing this doctor. I had also gained > a > pound and a half. My doctor was thrilled. So was I. > So > even though there are still nights when its hard for > me to wear it, I try not to take it off. Its a very > different experience for different people. Some > people > adjust to it right away. I don't adjust to anything > right away, LOL. :-) Lori G. can verify that. :-) > > Dina > --- as if wrote: > > > i have been using the bipap for around 6 months > and > > i love ut it has changed my life dramaticly i will > > now not even have a nap without using it > > > > laura > > > > Jenifer Woody wrote: > > I have an 11 year old daughter who has > > been using bipap since she was 4. Most of the time > > doctors resist putting kids on them until it's > > absolutely necessary, so if your daughter's sleep > > study is showing a need then you might want to > > really consider it. > > That being said... > > Whether to use any of these pieces of equipment is > a > > completely personal decision. You have to choose > > what is right for YOUR child and YOUR family. We > > wouldn't give up h's bipap for anything > because > > she's been so much healthier since she began using > > it, but I also know families who are very > > uncomfortable with the idea of using it. I know > many > > families who only choose to use bipap when their > > child is sick. Like I said, it's a personal > > decision. > > My personal opinion is this: If a child is having > > chronic respiratory infections, seems tired or > > easily tired during the day, or seems to be losing > > strengths that they once had, then a bipap is > > probably a good idea. > > If you want to talk to more parents who have > chosen > > this route for their children you might want to > > check out www.smasupport.com - There are many > > parents who have made the choice for their > children > > to use bipap there. > > Also, I'd like to say that h refuses to go to > > sleep without her bipap. She's completely > > comfortable with it and knows it helps her. She > ASKS > > for it if she's not feeling well!!!!! > > Good luck with your decision > > > > Love and Hugs > > Jeni > > > > > > BiPap Machine > > > > Hi, > > My daughter age 8 (SMA II) was told that she may > > need to use the BiPap machine at night. However, I > > find that she is still very active and alert day > > time and don't seem to be not having enough sleep > or > > not sleep well as what the doctor suggested after > > looking at her sleep study report. May I know is > > there anything else we can do to verify or check > if > > she really need the BiPap machine now ? We really > > don't wish to put her on the BiPap machine so > early > > if possible. Can someone please help. Tqvm. ML > > > > ------------ --------- --------- --- > > Need a vacation? Get great deals to amazing places > > on Travel. > > > > [Non-text portions of this message have been > > removed] > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > --------------------------------- > > For ideas on reducing your carbon footprint visit > > For Good this month. > > > > [Non-text portions of this message have been > > removed] > > > > > > > > ________________________________________________________________________________\ ____ > Luggage? GPS? Comic books? > Check out fitting gifts for grads at Search > http://search./search?fr=oni_on_mail & p=graduation+gifts & cs=bz > > > 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 August 17, 2007 Report Share Posted August 17, 2007 Thanks-this really helps me feel like less of a lamo for not being able to adjust right away. I won't give up and like you said I'll just work my way up to more time. I didn't think it would bother me, so that is a surprise in itself. I'll be ok though-I'm not the type to just give up. I appreciate you sharing your experience too! Dina Abramson <dinaa68@...> wrote: I definitely understand your frustration Joy. How many months have you been working at it? I have been working at it for nearly a year, and I'm still not using it all night every night. I think if you work your way up to even two or three hours a night, it would be better than not using it all. I noticed a change in my energy when I was only using it for a few hours even just a few times a week. I have been very scared of masks on my face for years, and I was very upset when the nasal pillows did not work for me, and I had to switch to a face mask. I didn't think I could do it. But over time it did get easier. One thing I did was start out with the mask over my face but not latched. I would hold it on my face until I started to fall asleep. If you don't have arm strength, this may not be an option for you. But that is one way I became more accustomed to it. After practicing for awhile like that, I would start latching it just for a few minutes at a time, and work my way up. Another thing I did to practice was to wear it during the day. If I took a nap, or even just layed down to rest in the afternoon, I would wear it. It made me less nervous to nap with it during the day than to sleep with it at night. I hope this helps. Dina --- Joy wrote: > Hi Dina, > I cannot get used to it. I keep trying but can > only tolerate it for about 45 min. to an hour. > I don't think with such little use it will give me > more energy and mental clarity and everything > wonderful it is said to do huh? > > > Dina Abramson wrote: > I am using a bi-pap on most nights; I started last > September but it has taken me a long time to get > used > to it. It does not take everyone as long as me to > get > used to it. I definitely think it is working; I have > more energy and more mental clarity as well. I am > also > experencing less anxiety than I used to, although I > don't know if that is becuase of the bi-pap. When I > went in for breathing tests in July, my counts were > the highest they have ever been in the three years > that I've been seeing this doctor. I had also gained > a > pound and a half. My doctor was thrilled. So was I. > So > even though there are still nights when its hard for > me to wear it, I try not to take it off. Its a very > different experience for different people. Some > people > adjust to it right away. I don't adjust to anything > right away, LOL. :-) Lori G. can verify that. :-) > > Dina > --- as if wrote: > > > i have been using the bipap for around 6 months > and > > i love ut it has changed my life dramaticly i will > > now not even have a nap without using it > > > > laura > > > > Jenifer Woody wrote: > > I have an 11 year old daughter who has > > been using bipap since she was 4. Most of the time > > doctors resist putting kids on them until it's > > absolutely necessary, so if your daughter's sleep > > study is showing a need then you might want to > > really consider it. > > That being said... > > Whether to use any of these pieces of equipment is > a > > completely personal decision. You have to choose > > what is right for YOUR child and YOUR family. We > > wouldn't give up h's bipap for anything > because > > she's been so much healthier since she began using > > it, but I also know families who are very > > uncomfortable with the idea of using it. I know > many > > families who only choose to use bipap when their > > child is sick. Like I said, it's a personal > > decision. > > My personal opinion is this: If a child is having > > chronic respiratory infections, seems tired or > > easily tired during the day, or seems to be losing > > strengths that they once had, then a bipap is > > probably a good idea. > > If you want to talk to more parents who have > chosen > > this route for their children you might want to > > check out www.smasupport.com - There are many > > parents who have made the choice for their > children > > to use bipap there. > > Also, I'd like to say that h refuses to go to > > sleep without her bipap. She's completely > > comfortable with it and knows it helps her. She > ASKS > > for it if she's not feeling well!!!!! > > Good luck with your decision > > > > Love and Hugs > > Jeni > > > > > > BiPap Machine > > > > Hi, > > My daughter age 8 (SMA II) was told that she may > > need to use the BiPap machine at night. However, I > > find that she is still very active and alert day > > time and don't seem to be not having enough sleep > or > > not sleep well as what the doctor suggested after > > looking at her sleep study report. May I know is > > there anything else we can do to verify or check > if > > she really need the BiPap machine now ? We really > > don't wish to put her on the BiPap machine so > early > > if possible. Can someone please help. Tqvm. ML > > > > ------------ --------- --------- --- > > Need a vacation? Get great deals to amazing places > > on Travel. > > > > [Non-text portions of this message have been > > removed] > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > --------------------------------- > > For ideas on reducing your carbon footprint visit > > For Good this month. > > > > [Non-text portions of this message have been > > removed] > > > > > > > > ________________________________________________________________________________\ ____ > Luggage? GPS? Comic books? > Check out fitting gifts for grads at Search > http://search./search?fr=oni_on_mail & p=graduation+gifts & cs=bz > > > 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 August 29, 2007 Report Share Posted August 29, 2007 Hi, thank you very much for those who have responded to my enquiry on the Bipap. Well, we have brought her for a follow up at the clinic last week and the doctor decided to put her on another sleep study this November to further assess the need on the Bipap as she has managed to reduce her weight by 2kg. May I know if a person who is already using the Bipap would require to do a sleep study yearly or not ? Or, how often a SMAer need to do the sleep study ? Rgds, ML Dina Abramson <dinaa68@...> wrote: I definitely understand your frustration Joy. How many months have you been working at it? I have been working at it for nearly a year, and I'm still not using it all night every night. I think if you work your way up to even two or three hours a night, it would be better than not using it all. I noticed a change in my energy when I was only using it for a few hours even just a few times a week. I have been very scared of masks on my face for years, and I was very upset when the nasal pillows did not work for me, and I had to switch to a face mask. I didn't think I could do it. But over time it did get easier. One thing I did was start out with the mask over my face but not latched. I would hold it on my face until I started to fall asleep. If you don't have arm strength, this may not be an option for you. But that is one way I became more accustomed to it. After practicing for awhile like that, I would start latching it just for a few minutes at a time, and work my way up. Another thing I did to practice was to wear it during the day. If I took a nap, or even just layed down to rest in the afternoon, I would wear it. It made me less nervous to nap with it during the day than to sleep with it at night. I hope this helps. Dina --- Joy <j0yeuxx@...> wrote: > Hi Dina, > I cannot get used to it. I keep trying but can > only tolerate it for about 45 min. to an hour. > I don't think with such little use it will give me > more energy and mental clarity and everything > wonderful it is said to do huh? > > > Dina Abramson <dinaa68@...> wrote: > I am using a bi-pap on most nights; I started last > September but it has taken me a long time to get > used > to it. It does not take everyone as long as me to > get > used to it. I definitely think it is working; I have > more energy and more mental clarity as well. I am > also > experencing less anxiety than I used to, although I > don't know if that is becuase of the bi-pap. When I > went in for breathing tests in July, my counts were > the highest they have ever been in the three years > that I've been seeing this doctor. I had also gained > a > pound and a half. My doctor was thrilled. So was I. > So > even though there are still nights when its hard for > me to wear it, I try not to take it off. Its a very > different experience for different people. Some > people > adjust to it right away. I don't adjust to anything > right away, LOL. :-) Lori G. can verify that. :-) > > Dina > --- as if wrote: > > > i have been using the bipap for around 6 months > and > > i love ut it has changed my life dramaticly i will > > now not even have a nap without using it > > > > laura > > > > Jenifer Woody wrote: > > I have an 11 year old daughter who has > > been using bipap since she was 4. Most of the time > > doctors resist putting kids on them until it's > > absolutely necessary, so if your daughter's sleep > > study is showing a need then you might want to > > really consider it. > > That being said... > > Whether to use any of these pieces of equipment is > a > > completely personal decision. You have to choose > > what is right for YOUR child and YOUR family. We > > wouldn't give up h's bipap for anything > because > > she's been so much healthier since she began using > > it, but I also know families who are very > > uncomfortable with the idea of using it. I know > many > > families who only choose to use bipap when their > > child is sick. Like I said, it's a personal > > decision. > > My personal opinion is this: If a child is having > > chronic respiratory infections, seems tired or > > easily tired during the day, or seems to be losing > > strengths that they once had, then a bipap is > > probably a good idea. > > If you want to talk to more parents who have > chosen > > this route for their children you might want to > > check out www.smasupport.com - There are many > > parents who have made the choice for their > children > > to use bipap there. > > Also, I'd like to say that h refuses to go to > > sleep without her bipap. She's completely > > comfortable with it and knows it helps her. She > ASKS > > for it if she's not feeling well!!!!! > > Good luck with your decision > > > > Love and Hugs > > Jeni > > > > > > BiPap Machine > > > > Hi, > > My daughter age 8 (SMA II) was told that she may > > need to use the BiPap machine at night. However, I > > find that she is still very active and alert day > > time and don't seem to be not having enough sleep > or > > not sleep well as what the doctor suggested after > > looking at her sleep study report. May I know is > > there anything else we can do to verify or check > if > > she really need the BiPap machine now ? We really > > don't wish to put her on the BiPap machine so > early > > if possible. Can someone please help. Tqvm. ML > > > > ------------ --------- --------- --- > > Need a vacation? Get great deals to amazing places > > on Travel. > > > > [Non-text portions of this message have been > > removed] > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > --------------------------------- > > For ideas on reducing your carbon footprint visit > > For Good this month. > > > > [Non-text portions of this message have been > > removed] > > > > > > > > __________________________________________________________ > Luggage? GPS? Comic books? > Check out fitting gifts for grads at Search > http://search./search?fr=oni_on_mail & p=graduation+gifts & cs=bz > > > 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 August 29, 2007 Report Share Posted August 29, 2007 h has been using bi-pap since she was 4 (2000) and has only had ONE sleep study total - just a little over a month ago. She did not have one before beginning bipap because it was during a critical hospital stay. We only did this one to assess her need to move from pressure ventilation (bi-pap) to volume ventilation. Good luck Love and Hugs Jeni BiPap Machine > > > > Hi, > > My daughter age 8 (SMA II) was told that she may > > need to use the BiPap machine at night. However, I > > find that she is still very active and alert day > > time and don't seem to be not having enough sleep > or > > not sleep well as what the doctor suggested after > > looking at her sleep study report. May I know is > > there anything else we can do to verify or check > if > > she really need the BiPap machine now ? We really > > don't wish to put her on the BiPap machine so > early > > if possible. Can someone please help. Tqvm. ML > > > > ------------ --------- --------- --- > > Need a vacation? Get great deals to amazing places > > on Travel. > > > > [Non-text portions of this message have been > > removed] > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > ------------ --------- --------- --- > > For ideas on reducing your carbon footprint visit > > For Good this month. > > > > [Non-text portions of this message have been > > removed] > > > > > > > > ____________ _________ _________ _________ _________ _________ _ > Luggage? GPS? Comic books? > Check out fitting gifts for grads at Search > http://search. / search?fr= oni_on_mail & p=graduation+ gifts & cs= bz > > > 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: @gro ups.com > Subscribe: -subscrib egroups (DOT) com > Unsubscribe: -unsubscr ibegroups (DOT) com > > List manager: (Sexy Mature Artist) Email: > Esma1999aol (DOT) com > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: > Esma1999aol (DOT) com > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 Hi Ming Lee, I've used different types of ventilation over the years and have never had a full-fledged sleep study, but I think they are less common with my generation (I'm 41). I've only had initial pulmonary testing at age 14 with arterial blood-gases (ABGs). Then I had occasional in-the-middle-of-the-night and first-waking-up ABGs when in the hospital for the 1st 8 or 10 years after that while trying to figure out what's wrong when I've been repeatedly sick. Once when I was about 20, a respiratory therapist came to my home at 8:00 a.m. to do an ABG when I was 1st waking and was still on my nighttime vent. Now, I'm having more trouble sleeping and have more headaches. I believe it's because antibiotics keep causing severe stomach gas that obstructs my breathing. I'll be talking with a pulmonary doc about looking into this. They'll probably want to do a sleep study. In my experience, once a person's ventilation is stabilized, sleep studies aren't necessary unless something changes. Your daughter's weight-loss is a good example of why they might want to do another sleep study, especially if it's an unexplained and undesireable weight-loss. But I also want to remind you that as your daughter's health care advocate, you can decline doing tests that you believe are unnecessary. For example, when I go to the emergency room with severe kidney stone pain, the doctor automatically orders a chest x- ray before even meeting me because I'm on a ventilator. I turn the x- ray technician away and explain that I am refusing it because I'm not having respiratory problems. This makes some docs nervous and annoyed until they meet me and realize I know what I'm doing and they listen to my lungs which have been clear since May '00. Now I tell the triage nurse right away that I'll refuse any chest x-rays the doctor might order...This saves time. Good luck with the testing! Alana Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.