keeping up with treatments

T

threebabies

Member
This is difficult. My 2 year old is doing many therapies and my 1 year old twin boys are also doing some therapies as well. My daughter is taking...
<br />
<br />AM enzymes,vitamin, previcid, albuteral puff, vest, pulmozyme, tobi and flovent puff.
<br />
<br />PM albuteral, vest,tobi and flovent.
<br />
<br />We have the same routine everyday. I find doing enzymes is the most difficult because she grazes all day.
<br />
<br />
<br />My twin boys are taking
<br />
<br />AM- prvicid,vitamin, enzymes, albuteral chest pt, facial massage( They both suffered from facial nerve palsy from Vitamin A deficientcy
<br />
<br />PM- albuteral, chest pt
 
K

kirstynkoffs

New member
I was scared into being 100% compliant a little while back after going from an extremely healthy 'normal' young person to extremely sick and pre-transplant in a matter of months. Routine is the key I agree! Pill boxes as everyone has said - if your pills don't fit go to a craft store and get a craft box it is exactly the same as a pill box but bigger. Hardware stores and fishing tackle boxes work well too! Just sterilize them first lol! Trying to get them so you can make up at least a week at a time helps and taping a checklist on top helps me too. The other thing that helps are my sterilizer so my nebs are always close to ready when i need them and always doing the same neb at the same time. I also always keep a full dose of pills in my hand bag in a glad/snap lock bag incase I forget or run out of time. It is a really tricky balance but it's what will keep you alive!!!
 
K

kirstynkoffs

New member
I was scared into being 100% compliant a little while back after going from an extremely healthy 'normal' young person to extremely sick and pre-transplant in a matter of months. Routine is the key I agree! Pill boxes as everyone has said - if your pills don't fit go to a craft store and get a craft box it is exactly the same as a pill box but bigger. Hardware stores and fishing tackle boxes work well too! Just sterilize them first lol! Trying to get them so you can make up at least a week at a time helps and taping a checklist on top helps me too. The other thing that helps are my sterilizer so my nebs are always close to ready when i need them and always doing the same neb at the same time. I also always keep a full dose of pills in my hand bag in a glad/snap lock bag incase I forget or run out of time. It is a really tricky balance but it's what will keep you alive!!!
 
K

kirstynkoffs

New member
I was scared into being 100% compliant a little while back after going from an extremely healthy 'normal' young person to extremely sick and pre-transplant in a matter of months. Routine is the key I agree! Pill boxes as everyone has said - if your pills don't fit go to a craft store and get a craft box it is exactly the same as a pill box but bigger. Hardware stores and fishing tackle boxes work well too! Just sterilize them first lol! Trying to get them so you can make up at least a week at a time helps and taping a checklist on top helps me too. The other thing that helps are my sterilizer so my nebs are always close to ready when i need them and always doing the same neb at the same time. I also always keep a full dose of pills in my hand bag in a glad/snap lock bag incase I forget or run out of time. It is a really tricky balance but it's what will keep you alive!!!
 
K

kirstynkoffs

New member
I was scared into being 100% compliant a little while back after going from an extremely healthy 'normal' young person to extremely sick and pre-transplant in a matter of months. Routine is the key I agree! Pill boxes as everyone has said - if your pills don't fit go to a craft store and get a craft box it is exactly the same as a pill box but bigger. Hardware stores and fishing tackle boxes work well too! Just sterilize them first lol! Trying to get them so you can make up at least a week at a time helps and taping a checklist on top helps me too. The other thing that helps are my sterilizer so my nebs are always close to ready when i need them and always doing the same neb at the same time. I also always keep a full dose of pills in my hand bag in a glad/snap lock bag incase I forget or run out of time. It is a really tricky balance but it's what will keep you alive!!!
 
K

kirstynkoffs

New member
I was scared into being 100% compliant a little while back after going from an extremely healthy 'normal' young person to extremely sick and pre-transplant in a matter of months. Routine is the key I agree! Pill boxes as everyone has said - if your pills don't fit go to a craft store and get a craft box it is exactly the same as a pill box but bigger. Hardware stores and fishing tackle boxes work well too! Just sterilize them first lol! Trying to get them so you can make up at least a week at a time helps and taping a checklist on top helps me too. The other thing that helps are my sterilizer so my nebs are always close to ready when i need them and always doing the same neb at the same time. I also always keep a full dose of pills in my hand bag in a glad/snap lock bag incase I forget or run out of time. It is a really tricky balance but it's what will keep you alive!!!
 
K

kirstynkoffs

New member
I was scared into being 100% compliant a little while back after going from an extremely healthy 'normal' young person to extremely sick and pre-transplant in a matter of months. Routine is the key I agree! Pill boxes as everyone has said - if your pills don't fit go to a craft store and get a craft box it is exactly the same as a pill box but bigger. Hardware stores and fishing tackle boxes work well too! Just sterilize them first lol! Trying to get them so you can make up at least a week at a time helps and taping a checklist on top helps me too. The other thing that helps are my sterilizer so my nebs are always close to ready when i need them and always doing the same neb at the same time. I also always keep a full dose of pills in my hand bag in a glad/snap lock bag incase I forget or run out of time. It is a really tricky balance but it's what will keep you alive!!!
 
G

Giggles

New member
It is so tough to keep doin all the treatments but I have never skipped much cause when I do I feel it and it is just not worth it. Routine is good advice. You really just have to plan for it and suck it up and do it cause the alternative is just too costly. The only thing I might skip on is the HTS but even then when I do I feel it. Right now I have taken a break from the vest, but I do my flutter which I find way, way more effective for clearing out mucus. I LOVE my Flutter and could not live without.

Just plan the time for the meds and treatments into your life and just do it. If I am going out late one night I will do the treatments before going out so that helps not having to do them so late like at midnight.....

Plan, plan and plan. Good luck! I know it is so daunting!!!!

Jennifer 38 with CF and CFRD

PS For the parents teach the kids at a young age that this is something you just have to do like brushing your teeth so they develope great habits and will be able to stick with it their whole life! Just a suggestion
 
G

Giggles

New member
It is so tough to keep doin all the treatments but I have never skipped much cause when I do I feel it and it is just not worth it. Routine is good advice. You really just have to plan for it and suck it up and do it cause the alternative is just too costly. The only thing I might skip on is the HTS but even then when I do I feel it. Right now I have taken a break from the vest, but I do my flutter which I find way, way more effective for clearing out mucus. I LOVE my Flutter and could not live without.

Just plan the time for the meds and treatments into your life and just do it. If I am going out late one night I will do the treatments before going out so that helps not having to do them so late like at midnight.....

Plan, plan and plan. Good luck! I know it is so daunting!!!!

Jennifer 38 with CF and CFRD

PS For the parents teach the kids at a young age that this is something you just have to do like brushing your teeth so they develope great habits and will be able to stick with it their whole life! Just a suggestion
 
G

Giggles

New member
It is so tough to keep doin all the treatments but I have never skipped much cause when I do I feel it and it is just not worth it. Routine is good advice. You really just have to plan for it and suck it up and do it cause the alternative is just too costly. The only thing I might skip on is the HTS but even then when I do I feel it. Right now I have taken a break from the vest, but I do my flutter which I find way, way more effective for clearing out mucus. I LOVE my Flutter and could not live without.
<br />
<br />Just plan the time for the meds and treatments into your life and just do it. If I am going out late one night I will do the treatments before going out so that helps not having to do them so late like at midnight.....
<br />
<br />Plan, plan and plan. Good luck! I know it is so daunting!!!!
<br />
<br />Jennifer 38 with CF and CFRD
<br />
<br />PS For the parents teach the kids at a young age that this is something you just have to do like brushing your teeth so they develope great habits and will be able to stick with it their whole life! Just a suggestion
 
R

Ratatosk

Administrator
Staff member
Agreed, routine! When DS was diagnosed as an infant it was all so overwhelming -- the meds, nebs, cpt...

And we just got into a routine. Figure out where we need to be and work backwards. We have to be out the door at 7:45, so figure out how long vest & nebs is going to take. Usually DS eats breakfast in the car or during the summer when he gets to daycare.

Treatments are done done early in the morning. Then once again when we get home from work/school and again before bed. Once a week he does have an atheletic class right away after school, so we have skipped that treatment.

When DS was a baby, I had a plastic box in the kitchen that held most of his meds -- he was on liquid suspensions, so at first every night I'd draw up all the meds for the following day and keep them in a baggy in the fridge.

Nowdays I have a cupboard for meds and a clear pill container from the container store which holds a weeks worth of meds. And each day of the week is a separate container, which can be removed and carried with us.
 
R

Ratatosk

Administrator
Staff member
Agreed, routine! When DS was diagnosed as an infant it was all so overwhelming -- the meds, nebs, cpt...

And we just got into a routine. Figure out where we need to be and work backwards. We have to be out the door at 7:45, so figure out how long vest & nebs is going to take. Usually DS eats breakfast in the car or during the summer when he gets to daycare.

Treatments are done done early in the morning. Then once again when we get home from work/school and again before bed. Once a week he does have an atheletic class right away after school, so we have skipped that treatment.

When DS was a baby, I had a plastic box in the kitchen that held most of his meds -- he was on liquid suspensions, so at first every night I'd draw up all the meds for the following day and keep them in a baggy in the fridge.

Nowdays I have a cupboard for meds and a clear pill container from the container store which holds a weeks worth of meds. And each day of the week is a separate container, which can be removed and carried with us.
 
R

Ratatosk

Administrator
Staff member
Agreed, routine! When DS was diagnosed as an infant it was all so overwhelming -- the meds, nebs, cpt...
<br />
<br />And we just got into a routine. Figure out where we need to be and work backwards. We have to be out the door at 7:45, so figure out how long vest & nebs is going to take. Usually DS eats breakfast in the car or during the summer when he gets to daycare.
<br />
<br />Treatments are done done early in the morning. Then once again when we get home from work/school and again before bed. Once a week he does have an atheletic class right away after school, so we have skipped that treatment.
<br />
<br />When DS was a baby, I had a plastic box in the kitchen that held most of his meds -- he was on liquid suspensions, so at first every night I'd draw up all the meds for the following day and keep them in a baggy in the fridge.
<br />
<br />Nowdays I have a cupboard for meds and a clear pill container from the container store which holds a weeks worth of meds. And each day of the week is a separate container, which can be removed and carried with us.
 
M

mah

Guest
I make a checklist on joe's goals (a site that is web-based & free to use). I can modify it for a 3 week course of whatever and it's great to keep on top of yourself. You can put in a little journal entry to note if you have a fever (and then check your compliance w/ symptoms).
A hint -- I made a separate email address (mymedchecklist@...) that you use to log in with, so that way, if you use the site for other goals, well, it's just better to keep track of the 3,000 treatments we have to do separately.
 
M

mah

Guest
I make a checklist on joe's goals (a site that is web-based & free to use). I can modify it for a 3 week course of whatever and it's great to keep on top of yourself. You can put in a little journal entry to note if you have a fever (and then check your compliance w/ symptoms).
A hint -- I made a separate email address (mymedchecklist@...) that you use to log in with, so that way, if you use the site for other goals, well, it's just better to keep track of the 3,000 treatments we have to do separately.
 
M

mah

Guest
I make a checklist on joe's goals (a site that is web-based & free to use). I can modify it for a 3 week course of whatever and it's great to keep on top of yourself. You can put in a little journal entry to note if you have a fever (and then check your compliance w/ symptoms).
<br />A hint -- I made a separate email address (mymedchecklist@...) that you use to log in with, so that way, if you use the site for other goals, well, it's just better to keep track of the 3,000 treatments we have to do separately.
 
J

jpetersen

New member
I couldn't be compliant if it wasn't for my eFlow/Trio/Altera for nebs. They cut my 4 hours of treatments down to less than 1 hour.
Why you NEED an eFlow a.k.a. Trio and Altera - <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com/2010/04/why-you-need-an-eflow-a-k-a-trio-and-altera/">http://www.cffatboy.com/2010/0...a-k-a-trio-and-altera/</a>
 
J

jpetersen

New member
I couldn't be compliant if it wasn't for my eFlow/Trio/Altera for nebs. They cut my 4 hours of treatments down to less than 1 hour.
Why you NEED an eFlow a.k.a. Trio and Altera - <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com/2010/04/why-you-need-an-eflow-a-k-a-trio-and-altera/">http://www.cffatboy.com/2010/0...a-k-a-trio-and-altera/</a>
 
J

jpetersen

New member
I couldn't be compliant if it wasn't for my eFlow/Trio/Altera for nebs. They cut my 4 hours of treatments down to less than 1 hour.
<br /> Why you NEED an eFlow a.k.a. Trio and Altera - <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com/2010/04/why-you-need-an-eflow-a-k-a-trio-and-altera/">http://www.cffatboy.com/2010/0...a-k-a-trio-and-altera/</a>
 
You must log in or register to reply here.
Top