New and needing some help

C

courtneykay76

New member
So, my little one who has been quite the little trooper through all of this had her last sputum culture come back with the P. bacteria. I'm ofcourse freaked out because up until now she's been amazingly healthy, strong and such a fighter. I'm new to all of this still even thought we've known since she was 9 months old that she had CF. Getting her to take TOBI for the first time has been a trial. She hates the mask even though its one of those cute fish faces, will sometimes if in a good mood take it straight out of the nebulizer, but for the most part it takes alot of bribery. I've had to quit my job also to stay home to take care of her. Does anyone know if there if any other assistance out there for financial hardship in the case of going from two income to one? We still have insurance (Thank God) through my husbands work ...but times are getting tight. If anyone can give some advise I'm all ears.

Thanks!
Courtney
Mom to Sydney (2 and 1/2 CF)
 
C

courtneykay76

New member
So, my little one who has been quite the little trooper through all of this had her last sputum culture come back with the P. bacteria. I'm ofcourse freaked out because up until now she's been amazingly healthy, strong and such a fighter. I'm new to all of this still even thought we've known since she was 9 months old that she had CF. Getting her to take TOBI for the first time has been a trial. She hates the mask even though its one of those cute fish faces, will sometimes if in a good mood take it straight out of the nebulizer, but for the most part it takes alot of bribery. I've had to quit my job also to stay home to take care of her. Does anyone know if there if any other assistance out there for financial hardship in the case of going from two income to one? We still have insurance (Thank God) through my husbands work ...but times are getting tight. If anyone can give some advise I'm all ears.

Thanks!
Courtney
Mom to Sydney (2 and 1/2 CF)
 
C

courtneykay76

New member
So, my little one who has been quite the little trooper through all of this had her last sputum culture come back with the P. bacteria. I'm ofcourse freaked out because up until now she's been amazingly healthy, strong and such a fighter. I'm new to all of this still even thought we've known since she was 9 months old that she had CF. Getting her to take TOBI for the first time has been a trial. She hates the mask even though its one of those cute fish faces, will sometimes if in a good mood take it straight out of the nebulizer, but for the most part it takes alot of bribery. I've had to quit my job also to stay home to take care of her. Does anyone know if there if any other assistance out there for financial hardship in the case of going from two income to one? We still have insurance (Thank God) through my husbands work ...but times are getting tight. If anyone can give some advise I'm all ears.

Thanks!
Courtney
Mom to Sydney (2 and 1/2 CF)
 
P

PinkRaysOfSunshine

New member
... i feel ya..... my baby is almost 9 mos... her daddy doesnt help out at all.. he comes and goes... i stay at home to take care of her too... we get welfare? 225.00 a month? but we have great insurance so it makes a difference..... there is a thing that they told me about at the cf clinic ... at the university of kentucky where sissy goes.... um...... u could call them.... i think its the colaistion of kids with special needs.............. crap... i dont know.... um..... where do u live?
my email address is pink_rays_of_sunshine@yahoo.com we got a cap thingie here too... and first steps will get u a babysitter.... dont know how qualified they r though..... ........... the free stuff is out there.... u just gotta find it....... trust me.... lol
 
P

PinkRaysOfSunshine

New member
... i feel ya..... my baby is almost 9 mos... her daddy doesnt help out at all.. he comes and goes... i stay at home to take care of her too... we get welfare? 225.00 a month? but we have great insurance so it makes a difference..... there is a thing that they told me about at the cf clinic ... at the university of kentucky where sissy goes.... um...... u could call them.... i think its the colaistion of kids with special needs.............. crap... i dont know.... um..... where do u live?
my email address is pink_rays_of_sunshine@yahoo.com we got a cap thingie here too... and first steps will get u a babysitter.... dont know how qualified they r though..... ........... the free stuff is out there.... u just gotta find it....... trust me.... lol
 
P

PinkRaysOfSunshine

New member
... i feel ya..... my baby is almost 9 mos... her daddy doesnt help out at all.. he comes and goes... i stay at home to take care of her too... we get welfare? 225.00 a month? but we have great insurance so it makes a difference..... there is a thing that they told me about at the cf clinic ... at the university of kentucky where sissy goes.... um...... u could call them.... i think its the colaistion of kids with special needs.............. crap... i dont know.... um..... where do u live?
my email address is pink_rays_of_sunshine@yahoo.com we got a cap thingie here too... and first steps will get u a babysitter.... dont know how qualified they r though..... ........... the free stuff is out there.... u just gotta find it....... trust me.... lol
 
P

PinkRaysOfSunshine

New member
oh and if u can get ur little one to take the mask.. ur more of a woman than me... cause we fight like dogs..... she screams, cries, kicks, swings..... EVERYTHING... she cant even crawl yet.... but she comes pretty darn close during those times... sometimes she gives in and just sits there... and sometimes i give in and just do a blow by........... GOOD LUCK
 
P

PinkRaysOfSunshine

New member
oh and if u can get ur little one to take the mask.. ur more of a woman than me... cause we fight like dogs..... she screams, cries, kicks, swings..... EVERYTHING... she cant even crawl yet.... but she comes pretty darn close during those times... sometimes she gives in and just sits there... and sometimes i give in and just do a blow by........... GOOD LUCK
 
P

PinkRaysOfSunshine

New member
oh and if u can get ur little one to take the mask.. ur more of a woman than me... cause we fight like dogs..... she screams, cries, kicks, swings..... EVERYTHING... she cant even crawl yet.... but she comes pretty darn close during those times... sometimes she gives in and just sits there... and sometimes i give in and just do a blow by........... GOOD LUCK
 
W

wormsmom

New member
I guess it depends on where you live but there is a program in SC that is called CRS...children's rehab services. I also quit my job long ago to take care of my dd when she was diagnosed at 9 months. We did get on SSI for a while but I wouldn't recommend it for anyone, or not in SC anyways. I gave those people all our info ss#, life ins. policies, and almost everything down to the color of our underwear and then had my DH employers print out income info and yet they lost our entire folder w/info and also told me they had "guesstimate" our income wrong????????(why were they guesstimating when I was sending them facts) anyway to make a long story short they said we owed them like $9000.00 back
LMBO....yeah whatever.....
Anyways best of luck...call your local congressman's office they should be able to tell you what help is out there depending on your situation and where you live.
Best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wormsmom

New member
I guess it depends on where you live but there is a program in SC that is called CRS...children's rehab services. I also quit my job long ago to take care of my dd when she was diagnosed at 9 months. We did get on SSI for a while but I wouldn't recommend it for anyone, or not in SC anyways. I gave those people all our info ss#, life ins. policies, and almost everything down to the color of our underwear and then had my DH employers print out income info and yet they lost our entire folder w/info and also told me they had "guesstimate" our income wrong????????(why were they guesstimating when I was sending them facts) anyway to make a long story short they said we owed them like $9000.00 back
LMBO....yeah whatever.....
Anyways best of luck...call your local congressman's office they should be able to tell you what help is out there depending on your situation and where you live.
Best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wormsmom

New member
I guess it depends on where you live but there is a program in SC that is called CRS...children's rehab services. I also quit my job long ago to take care of my dd when she was diagnosed at 9 months. We did get on SSI for a while but I wouldn't recommend it for anyone, or not in SC anyways. I gave those people all our info ss#, life ins. policies, and almost everything down to the color of our underwear and then had my DH employers print out income info and yet they lost our entire folder w/info and also told me they had "guesstimate" our income wrong????????(why were they guesstimating when I was sending them facts) anyway to make a long story short they said we owed them like $9000.00 back
LMBO....yeah whatever.....
Anyways best of luck...call your local congressman's office they should be able to tell you what help is out there depending on your situation and where you live.
Best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Rebjane

Super Moderator
Depending on which state you live in there are different programs to help financially. Ask the case manager/social worker at your CF clinic if there are programs that you are eligible for. Some drug companys have programs to help with the costs. For example, if your daughter takes Creon for enzyme replacement you can get free vitamins with it. Other programs offer free high calorie drinks. Look on the newly diagnosed board on this forum and you should find information on financial assistance programs. It can be confusing and they vary from state to state but it's worth looking into. Even when you have health insurance the co-pays per month can be alot! Our family spends hundreds of dollars in co-pays for my daughters's 9 medications she takes everyday.

My daughter is not on TOBI yet but she does other nebs everyday. We let her watch TV, pick a favorite show and puff away. I don't recall her ever fighting the neb, maybe at first she was afraid of the sound but bribery is a good option. Perhaps with some small candy or toy she really loves, like M&M's after her neb or have a basket of special(inexpensive) toys(like from a dollar store) she could pick from after she does her neb.

Good luck,
 
R

Rebjane

Super Moderator
Depending on which state you live in there are different programs to help financially. Ask the case manager/social worker at your CF clinic if there are programs that you are eligible for. Some drug companys have programs to help with the costs. For example, if your daughter takes Creon for enzyme replacement you can get free vitamins with it. Other programs offer free high calorie drinks. Look on the newly diagnosed board on this forum and you should find information on financial assistance programs. It can be confusing and they vary from state to state but it's worth looking into. Even when you have health insurance the co-pays per month can be alot! Our family spends hundreds of dollars in co-pays for my daughters's 9 medications she takes everyday.

My daughter is not on TOBI yet but she does other nebs everyday. We let her watch TV, pick a favorite show and puff away. I don't recall her ever fighting the neb, maybe at first she was afraid of the sound but bribery is a good option. Perhaps with some small candy or toy she really loves, like M&M's after her neb or have a basket of special(inexpensive) toys(like from a dollar store) she could pick from after she does her neb.

Good luck,
 
R

Rebjane

Super Moderator
Depending on which state you live in there are different programs to help financially. Ask the case manager/social worker at your CF clinic if there are programs that you are eligible for. Some drug companys have programs to help with the costs. For example, if your daughter takes Creon for enzyme replacement you can get free vitamins with it. Other programs offer free high calorie drinks. Look on the newly diagnosed board on this forum and you should find information on financial assistance programs. It can be confusing and they vary from state to state but it's worth looking into. Even when you have health insurance the co-pays per month can be alot! Our family spends hundreds of dollars in co-pays for my daughters's 9 medications she takes everyday.

My daughter is not on TOBI yet but she does other nebs everyday. We let her watch TV, pick a favorite show and puff away. I don't recall her ever fighting the neb, maybe at first she was afraid of the sound but bribery is a good option. Perhaps with some small candy or toy she really loves, like M&M's after her neb or have a basket of special(inexpensive) toys(like from a dollar store) she could pick from after she does her neb.

Good luck,
 
J

JRPandTJP

New member
OUr son has been doing neb treatments in some forn since 15 months. We pop in his video/DVD of choice and he tolerates it well. Did they set you up with the E-Flow for the TOBI? It only took 5-10 minutes to do it and that helped big time. He uses a regular neb for his GSH treatment twice daily, along with his vest CPT, and it takes 15 minutes.

I'm all for reward after too if they are giving you a really hard time. Make a little grab bag of tiny play dough, stickers, quarters for a piggy bank ect. He can grab something after a successful neb treatment.

He hasn't cultured PA since then and has been tremendously healthy so try not to let it feel hopeless...it's not. We cried and freaked out as well when we got the news. Then all the moms and dads on here told me the same thing I'm telling you '-) Hang in there...

Hope some else can help out with the financial stuff..it is stressful.

Jody
 
J

JRPandTJP

New member
OUr son has been doing neb treatments in some forn since 15 months. We pop in his video/DVD of choice and he tolerates it well. Did they set you up with the E-Flow for the TOBI? It only took 5-10 minutes to do it and that helped big time. He uses a regular neb for his GSH treatment twice daily, along with his vest CPT, and it takes 15 minutes.

I'm all for reward after too if they are giving you a really hard time. Make a little grab bag of tiny play dough, stickers, quarters for a piggy bank ect. He can grab something after a successful neb treatment.

He hasn't cultured PA since then and has been tremendously healthy so try not to let it feel hopeless...it's not. We cried and freaked out as well when we got the news. Then all the moms and dads on here told me the same thing I'm telling you '-) Hang in there...

Hope some else can help out with the financial stuff..it is stressful.

Jody
 
J

JRPandTJP

New member
OUr son has been doing neb treatments in some forn since 15 months. We pop in his video/DVD of choice and he tolerates it well. Did they set you up with the E-Flow for the TOBI? It only took 5-10 minutes to do it and that helped big time. He uses a regular neb for his GSH treatment twice daily, along with his vest CPT, and it takes 15 minutes.

I'm all for reward after too if they are giving you a really hard time. Make a little grab bag of tiny play dough, stickers, quarters for a piggy bank ect. He can grab something after a successful neb treatment.

He hasn't cultured PA since then and has been tremendously healthy so try not to let it feel hopeless...it's not. We cried and freaked out as well when we got the news. Then all the moms and dads on here told me the same thing I'm telling you '-) Hang in there...

Hope some else can help out with the financial stuff..it is stressful.

Jody
 
M

mommy2bcw2

New member
Jody- My 2 1/2 is on TOBI and i have never heard of E FLOW?? What is the difference the nebulizer??

Courtney- My 2 1/2 is a trooper too- we also turn on HER choice of a video during treatments and i explain to her the faster you are in doing your meds the faster you can run and play for the day! It usually works esp if we are going somewhere fun- like McDonalds!! She has hit a Disney princess stage so i put on her Cinderella dress up and let her color or lay in her Cinderella plush chair sometimes works too!!!

Blythe
 
M

mommy2bcw2

New member
Jody- My 2 1/2 is on TOBI and i have never heard of E FLOW?? What is the difference the nebulizer??

Courtney- My 2 1/2 is a trooper too- we also turn on HER choice of a video during treatments and i explain to her the faster you are in doing your meds the faster you can run and play for the day! It usually works esp if we are going somewhere fun- like McDonalds!! She has hit a Disney princess stage so i put on her Cinderella dress up and let her color or lay in her Cinderella plush chair sometimes works too!!!

Blythe
 
You must log in or register to reply here.
Top