Need info on CF

[dee25]

Hi all, im new to the site which im finding very helpful.
i hope this is ok to post here.
Im currentally doing a course on special needs assisting and my first assignment is on CF.
In my own life i dont know anyone with CF or know of anyone with a family member that has CF, im actually ashamed to say i never even heard of the disability until i started the course.
i would be very greatful if people could take time out and give me some information on CF.
I have found from this site and others how CF effects the organs etc but i cant find anywhere how it effects family life or what the day to day rotune is of a person with CF.
My case study is for an 8yr old girl that has CF, i would like to put myself in the shoes of a family member and find out how it effects other people as well as the child.
During my course i dont just want to learn about the medical part of CF i want to be at an understanding level with the parents, family members and friends so that if i do ever work with a person with CF i will be able to understand emotionally as well as been there to help.

 

[dee25]

Hi all, im new to the site which im finding very helpful.
i hope this is ok to post here.
Im currentally doing a course on special needs assisting and my first assignment is on CF.
In my own life i dont know anyone with CF or know of anyone with a family member that has CF, im actually ashamed to say i never even heard of the disability until i started the course.
i would be very greatful if people could take time out and give me some information on CF.
I have found from this site and others how CF effects the organs etc but i cant find anywhere how it effects family life or what the day to day rotune is of a person with CF.
My case study is for an 8yr old girl that has CF, i would like to put myself in the shoes of a family member and find out how it effects other people as well as the child.
During my course i dont just want to learn about the medical part of CF i want to be at an understanding level with the parents, family members and friends so that if i do ever work with a person with CF i will be able to understand emotionally as well as been there to help.

 

[dee25]

Hi all, im new to the site which im finding very helpful.
i hope this is ok to post here.
Im currentally doing a course on special needs assisting and my first assignment is on CF.
In my own life i dont know anyone with CF or know of anyone with a family member that has CF, im actually ashamed to say i never even heard of the disability until i started the course.
i would be very greatful if people could take time out and give me some information on CF.
I have found from this site and others how CF effects the organs etc but i cant find anywhere how it effects family life or what the day to day rotune is of a person with CF.
My case study is for an 8yr old girl that has CF, i would like to put myself in the shoes of a family member and find out how it effects other people as well as the child.
During my course i dont just want to learn about the medical part of CF i want to be at an understanding level with the parents, family members and friends so that if i do ever work with a person with CF i will be able to understand emotionally as well as been there to help.

 

[dee25]

Hi all, im new to the site which im finding very helpful.
i hope this is ok to post here.
Im currentally doing a course on special needs assisting and my first assignment is on CF.
In my own life i dont know anyone with CF or know of anyone with a family member that has CF, im actually ashamed to say i never even heard of the disability until i started the course.
i would be very greatful if people could take time out and give me some information on CF.
I have found from this site and others how CF effects the organs etc but i cant find anywhere how it effects family life or what the day to day rotune is of a person with CF.
My case study is for an 8yr old girl that has CF, i would like to put myself in the shoes of a family member and find out how it effects other people as well as the child.
During my course i dont just want to learn about the medical part of CF i want to be at an understanding level with the parents, family members and friends so that if i do ever work with a person with CF i will be able to understand emotionally as well as been there to help.

 

[dee25]

Hi all, im new to the site which im finding very helpful.
<br />i hope this is ok to post here.
<br />Im currentally doing a course on special needs assisting and my first assignment is on CF.
<br />In my own life i dont know anyone with CF or know of anyone with a family member that has CF, im actually ashamed to say i never even heard of the disability until i started the course.
<br />i would be very greatful if people could take time out and give me some information on CF.
<br />I have found from this site and others how CF effects the organs etc but i cant find anywhere how it effects family life or what the day to day rotune is of a person with CF.
<br />My case study is for an 8yr old girl that has CF, i would like to put myself in the shoes of a family member and find out how it effects other people as well as the child.
<br />During my course i dont just want to learn about the medical part of CF i want to be at an understanding level with the parents, family members and friends so that if i do ever work with a person with CF i will be able to understand emotionally as well as been there to help.

 

[lightNlife]

Hi Dee, I'm glad you're finding the site helpful so far.

I'm a professional freelance writer and one of the topics I write about frequently is CF, since I have it. I'm sending you some links to articles I've written that may be just what you're looking for. The first is "A day in the life of CF"

<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963370/a_day_in_the_life_of_a_cf_patient.html?cat=70
">http://www.associatedcontent.c...f_patient.html?cat=70
</a>
Secrets to Living Well with CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/991504/four_secrets_to_living_well_with_cystic.html?cat=70
">http://www.associatedcontent.c...th_cystic.html?cat=70
</a>
Top 5 Myths about CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963180/top_5_myths_about_cystic_fibrosis.html?cat=70
">http://www.associatedcontent.c..._fibrosis.html?cat=70
</a>
No Limitations on Activities for Children with CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/766225/no_limits_on_activities_for_children.html?cat=25
">http://www.associatedcontent.c..._children.html?cat=25
</a>
You can also find LOTS of information about the specifics of CF on my blog: <a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com.">http://understandingcysticfibrosis.blogspot.com.</a>

 

[lightNlife]

Hi Dee, I'm glad you're finding the site helpful so far.

I'm a professional freelance writer and one of the topics I write about frequently is CF, since I have it. I'm sending you some links to articles I've written that may be just what you're looking for. The first is "A day in the life of CF"

<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963370/a_day_in_the_life_of_a_cf_patient.html?cat=70
">http://www.associatedcontent.c...f_patient.html?cat=70
</a>
Secrets to Living Well with CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/991504/four_secrets_to_living_well_with_cystic.html?cat=70
">http://www.associatedcontent.c...th_cystic.html?cat=70
</a>
Top 5 Myths about CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963180/top_5_myths_about_cystic_fibrosis.html?cat=70
">http://www.associatedcontent.c..._fibrosis.html?cat=70
</a>
No Limitations on Activities for Children with CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/766225/no_limits_on_activities_for_children.html?cat=25
">http://www.associatedcontent.c..._children.html?cat=25
</a>
You can also find LOTS of information about the specifics of CF on my blog: <a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com.">http://understandingcysticfibrosis.blogspot.com.</a>

 

[lightNlife]

Hi Dee, I'm glad you're finding the site helpful so far.

I'm a professional freelance writer and one of the topics I write about frequently is CF, since I have it. I'm sending you some links to articles I've written that may be just what you're looking for. The first is "A day in the life of CF"

<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963370/a_day_in_the_life_of_a_cf_patient.html?cat=70
">http://www.associatedcontent.c...f_patient.html?cat=70
</a>
Secrets to Living Well with CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/991504/four_secrets_to_living_well_with_cystic.html?cat=70
">http://www.associatedcontent.c...th_cystic.html?cat=70
</a>
Top 5 Myths about CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963180/top_5_myths_about_cystic_fibrosis.html?cat=70
">http://www.associatedcontent.c..._fibrosis.html?cat=70
</a>
No Limitations on Activities for Children with CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/766225/no_limits_on_activities_for_children.html?cat=25
">http://www.associatedcontent.c..._children.html?cat=25
</a>
You can also find LOTS of information about the specifics of CF on my blog: <a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com.">http://understandingcysticfibrosis.blogspot.com.</a>

 

[lightNlife]

Hi Dee, I'm glad you're finding the site helpful so far.

I'm a professional freelance writer and one of the topics I write about frequently is CF, since I have it. I'm sending you some links to articles I've written that may be just what you're looking for. The first is "A day in the life of CF"

<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963370/a_day_in_the_life_of_a_cf_patient.html?cat=70
">http://www.associatedcontent.c...f_patient.html?cat=70
</a>
Secrets to Living Well with CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/991504/four_secrets_to_living_well_with_cystic.html?cat=70
">http://www.associatedcontent.c...th_cystic.html?cat=70
</a>
Top 5 Myths about CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963180/top_5_myths_about_cystic_fibrosis.html?cat=70
">http://www.associatedcontent.c..._fibrosis.html?cat=70
</a>
No Limitations on Activities for Children with CF
<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/766225/no_limits_on_activities_for_children.html?cat=25
">http://www.associatedcontent.c..._children.html?cat=25
</a>
You can also find LOTS of information about the specifics of CF on my blog: <a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com.">http://understandingcysticfibrosis.blogspot.com.</a>

 

[lightNlife]

Hi Dee, I'm glad you're finding the site helpful so far.
<br />
<br />I'm a professional freelance writer and one of the topics I write about frequently is CF, since I have it. I'm sending you some links to articles I've written that may be just what you're looking for. The first is "A day in the life of CF"
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963370/a_day_in_the_life_of_a_cf_patient.html?cat=70
">http://www.associatedcontent.c...f_patient.html?cat=70
</a><br />
<br />Secrets to Living Well with CF
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/991504/four_secrets_to_living_well_with_cystic.html?cat=70
">http://www.associatedcontent.c...th_cystic.html?cat=70
</a><br />
<br />Top 5 Myths about CF
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/963180/top_5_myths_about_cystic_fibrosis.html?cat=70
">http://www.associatedcontent.c..._fibrosis.html?cat=70
</a><br />
<br />No Limitations on Activities for Children with CF
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/766225/no_limits_on_activities_for_children.html?cat=25
">http://www.associatedcontent.c..._children.html?cat=25
</a><br />
<br />You can also find LOTS of information about the specifics of CF on my blog: <a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com.">http://understandingcysticfibrosis.blogspot.com.</a>
<br />
<br />

 

[zoe4life]

Dee,

Hello! Welcome to CF land....<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's cf clinic social worker is currently teaching a class on the same thing. He also is using CF in his teaching, he will be showing my daughter's video in his class. Here is a link to our web site, there is videos, links to newspaper articles, etc...should be helpful in some way. Also another link to an article in About.com

Good luck with your studies!

<a target=_blank class=ftalternatingbarlinklarge href="http://zoeforlife.blogspot.com/
">http://zoeforlife.blogspot.com/
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://cysticfibrosis.about.com/%3Cbr%20/%3E">http://cysticfibrosis.about.com/%3Cbr%20/%3E</a>

 

[zoe4life]

Dee,

Hello! Welcome to CF land....<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's cf clinic social worker is currently teaching a class on the same thing. He also is using CF in his teaching, he will be showing my daughter's video in his class. Here is a link to our web site, there is videos, links to newspaper articles, etc...should be helpful in some way. Also another link to an article in About.com

Good luck with your studies!

<a target=_blank class=ftalternatingbarlinklarge href="http://zoeforlife.blogspot.com/
">http://zoeforlife.blogspot.com/
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://cysticfibrosis.about.com/%3Cbr%20/%3E">http://cysticfibrosis.about.com/%3Cbr%20/%3E</a>

 

[zoe4life]

Dee,

Hello! Welcome to CF land....<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's cf clinic social worker is currently teaching a class on the same thing. He also is using CF in his teaching, he will be showing my daughter's video in his class. Here is a link to our web site, there is videos, links to newspaper articles, etc...should be helpful in some way. Also another link to an article in About.com

Good luck with your studies!

<a target=_blank class=ftalternatingbarlinklarge href="http://zoeforlife.blogspot.com/
">http://zoeforlife.blogspot.com/
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://cysticfibrosis.about.com/%3Cbr%20/%3E">http://cysticfibrosis.about.com/%3Cbr%20/%3E</a>

 

[zoe4life]

Dee,

Hello! Welcome to CF land....<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's cf clinic social worker is currently teaching a class on the same thing. He also is using CF in his teaching, he will be showing my daughter's video in his class. Here is a link to our web site, there is videos, links to newspaper articles, etc...should be helpful in some way. Also another link to an article in About.com

Good luck with your studies!

<a target=_blank class=ftalternatingbarlinklarge href="http://zoeforlife.blogspot.com/
">http://zoeforlife.blogspot.com/
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://cysticfibrosis.about.com/%3Cbr%20/%3E">http://cysticfibrosis.about.com/%3Cbr%20/%3E</a>

 

[zoe4life]

<br />Dee,
<br />
<br />Hello! Welcome to CF land....<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's cf clinic social worker is currently teaching a class on the same thing. He also is using CF in his teaching, he will be showing my daughter's video in his class. Here is a link to our web site, there is videos, links to newspaper articles, etc...should be helpful in some way. Also another link to an article in About.com
<br />
<br />Good luck with your studies!
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://zoeforlife.blogspot.com/
">http://zoeforlife.blogspot.com/
</a><br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://cysticfibrosis.about.com/%3Cbr%20/%3E">http://cysticfibrosis.about.com/%3Cbr%20/%3E</a>

 

[fourkidsmom]

Dee- CF is very time consuming on the family. Here is a list of my son's daily routine. Not included are the 2 hour one way CF doctor, and ENT and surgeon doctor visits. PM me if you have further questions.

BRADY'S DAILY MEDICATIONS -
MORNING:
1st breathing treatment:
Morning around 7:00 a.m. - 7:30 a.m.
1. .25 cc's of albuterol with 2 ml's (.5)pulmicort in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
(You should wait 10 to 15 minutes after the albuterol mask to start the HTS Mask. Need to allow the albuterol to open the airways for the HTS treatment.

2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of 10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.

3. Pulmozyme (2.5 mls) in Pari (fish) mask

MORNING MEDICATIONS:
Between 7:30-8:00 a.m. - Cyproheptadine (substituted for Periatin) 10ml's (4 times daily- usually right around BT time/every 4 hours)
2 tsp of lactulose
1 tablet of ADEKS vitamin
1 400 I.U. of Vitamin E
2 Creon 20 enzymes & 1 creon 10 enzyme with each meal
(2 Creon 20's enzymes with any snack throughout the day)
Prevacid with breakfast (right after enzymes) 15 mgs
Zithromax- 1 tsp. every Monday, Wednesday and Friday
Vitamin C- 500 mgs
Nasonex Nasal Spray- 2 squirts in each nostril
Dexamethasone Nasal Spray- 2 squirts each side
Nasal wash with distilled water in the shower
Ocean spray- squirt in each nostril 2-3 times daily
9:00 a.m. 10mgs of Adderall (started 3/19/08) Stopped thru summertime.

LUNCH
2nd Breathing Treatment for the day: (around 11:30 a.m. and 12:00 p.m.)
(If at school Brady does an albuterol inhaler with an aeorchamber.) If not at school he does this: .25 cc's of albuterol with 2 cc's broncho saline in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
LUNCH MEDICATIONS:
2 Creon 20 enzymes & 1 creon 10 enzyme with meal
Between 11:30 & 12:00 p.m. Cyproheptadine (substituted for Periatin) 10 ML'S

MID-DAY
3rd breathing treatment for the day: (around 3:30 p.m. and 4:00 p.m.)

1. .25cc's of albuterol w/ 2 cc's of .9% sodium chloride (broncho saline) in a regular mask USE VEST for 20 MINUTES

YOU NEED TO WAIT 10-15 MINUTES AFTER THE ALBUTEROL TREATMENT BEFORE STARTING THE HTS TREATMENT

2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of
10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.

MID-DAY MEDICATION'S
17 grams of Miralax in 8 oz of juice
(2 Creon 20's enzymes with snacks)
Between 3:30- 4:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's


SUPPER
15 mgs of Prevacid
2 Creon 20 enzymes & 1 creon 10 enzyme with each meal

NIGHT
4th Breathing treatment: (usually around 8:00- 8:30 p.m.)
2 ml's of Pulmicort w/ .25 cc's of albuterol in regular mask USE VEST for 20 MINUTES

NIGHT MEDICATION'S
2 tsp of lactulose
Nasal wash with distilled water
(2 Creon 20's enzymes with snacks)
Nasonex Nasal Spray- 2 squirts in each nostril
Dexamethasone Nasal Spray- 2 squirts each side
Between 8:30- 9:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's


NIGHT FEEDING
9 hours of continuous feeding- 4 cans of pediasure
2 Creon 20's and 1 Creon 10 before hook-up at night, then give 2 Creon 20's and 1 Creon 10 in the morning after unhooking from night feeding.


Editted: I have to agree completely with MicheleGazelle about the financial part. I have stayed at home with my child with Cf for the last 3 yrs. He has had numerous surgeries and hospital admits which I stay with him the whole time. It is hard to find a job that will work around that. I had a terrific job in a real estate company and it just got to be too much. It is a full time job just dealing with the bills brought on by the disease, calling hte insurance company- normally daily, keeping up with medications & the every day maintenance of the disease. It is hard enough to be fighting it daily let alone financially being drained. My husband often feels very frustrated because we could be doing really good for ourselves money wise if it weren't for CF. It stinks that it alters our life so much. You really can't explain it fully unless you are living it. People need to be thankful that are healthy because they really have no clue what living with CF is like!


Fourkidsmom

 

[fourkidsmom]

Dee- CF is very time consuming on the family. Here is a list of my son's daily routine. Not included are the 2 hour one way CF doctor, and ENT and surgeon doctor visits. PM me if you have further questions.

BRADY'S DAILY MEDICATIONS -
MORNING:
1st breathing treatment:
Morning around 7:00 a.m. - 7:30 a.m.
1. .25 cc's of albuterol with 2 ml's (.5)pulmicort in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
(You should wait 10 to 15 minutes after the albuterol mask to start the HTS Mask. Need to allow the albuterol to open the airways for the HTS treatment.

2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of 10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.

3. Pulmozyme (2.5 mls) in Pari (fish) mask

MORNING MEDICATIONS:
Between 7:30-8:00 a.m. - Cyproheptadine (substituted for Periatin) 10ml's (4 times daily- usually right around BT time/every 4 hours)
2 tsp of lactulose
1 tablet of ADEKS vitamin
1 400 I.U. of Vitamin E
2 Creon 20 enzymes & 1 creon 10 enzyme with each meal
(2 Creon 20's enzymes with any snack throughout the day)
Prevacid with breakfast (right after enzymes) 15 mgs
Zithromax- 1 tsp. every Monday, Wednesday and Friday
Vitamin C- 500 mgs
Nasonex Nasal Spray- 2 squirts in each nostril
Dexamethasone Nasal Spray- 2 squirts each side
Nasal wash with distilled water in the shower
Ocean spray- squirt in each nostril 2-3 times daily
9:00 a.m. 10mgs of Adderall (started 3/19/08) Stopped thru summertime.

LUNCH
2nd Breathing Treatment for the day: (around 11:30 a.m. and 12:00 p.m.)
(If at school Brady does an albuterol inhaler with an aeorchamber.) If not at school he does this: .25 cc's of albuterol with 2 cc's broncho saline in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
LUNCH MEDICATIONS:
2 Creon 20 enzymes & 1 creon 10 enzyme with meal
Between 11:30 & 12:00 p.m. Cyproheptadine (substituted for Periatin) 10 ML'S

MID-DAY
3rd breathing treatment for the day: (around 3:30 p.m. and 4:00 p.m.)

1. .25cc's of albuterol w/ 2 cc's of .9% sodium chloride (broncho saline) in a regular mask USE VEST for 20 MINUTES

YOU NEED TO WAIT 10-15 MINUTES AFTER THE ALBUTEROL TREATMENT BEFORE STARTING THE HTS TREATMENT

2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of
10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.

MID-DAY MEDICATION'S
17 grams of Miralax in 8 oz of juice
(2 Creon 20's enzymes with snacks)
Between 3:30- 4:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's


SUPPER
15 mgs of Prevacid
2 Creon 20 enzymes & 1 creon 10 enzyme with each meal

NIGHT
4th Breathing treatment: (usually around 8:00- 8:30 p.m.)
2 ml's of Pulmicort w/ .25 cc's of albuterol in regular mask USE VEST for 20 MINUTES

NIGHT MEDICATION'S
2 tsp of lactulose
Nasal wash with distilled water
(2 Creon 20's enzymes with snacks)
Nasonex Nasal Spray- 2 squirts in each nostril
Dexamethasone Nasal Spray- 2 squirts each side
Between 8:30- 9:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's


NIGHT FEEDING
9 hours of continuous feeding- 4 cans of pediasure
2 Creon 20's and 1 Creon 10 before hook-up at night, then give 2 Creon 20's and 1 Creon 10 in the morning after unhooking from night feeding.


Editted: I have to agree completely with MicheleGazelle about the financial part. I have stayed at home with my child with Cf for the last 3 yrs. He has had numerous surgeries and hospital admits which I stay with him the whole time. It is hard to find a job that will work around that. I had a terrific job in a real estate company and it just got to be too much. It is a full time job just dealing with the bills brought on by the disease, calling hte insurance company- normally daily, keeping up with medications & the every day maintenance of the disease. It is hard enough to be fighting it daily let alone financially being drained. My husband often feels very frustrated because we could be doing really good for ourselves money wise if it weren't for CF. It stinks that it alters our life so much. You really can't explain it fully unless you are living it. People need to be thankful that are healthy because they really have no clue what living with CF is like!


Fourkidsmom

 

[fourkidsmom]

Dee- CF is very time consuming on the family. Here is a list of my son's daily routine. Not included are the 2 hour one way CF doctor, and ENT and surgeon doctor visits. PM me if you have further questions.

BRADY'S DAILY MEDICATIONS -
MORNING:
1st breathing treatment:
Morning around 7:00 a.m. - 7:30 a.m.
1. .25 cc's of albuterol with 2 ml's (.5)pulmicort in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
(You should wait 10 to 15 minutes after the albuterol mask to start the HTS Mask. Need to allow the albuterol to open the airways for the HTS treatment.

2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of 10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.

3. Pulmozyme (2.5 mls) in Pari (fish) mask

MORNING MEDICATIONS:
Between 7:30-8:00 a.m. - Cyproheptadine (substituted for Periatin) 10ml's (4 times daily- usually right around BT time/every 4 hours)
2 tsp of lactulose
1 tablet of ADEKS vitamin
1 400 I.U. of Vitamin E
2 Creon 20 enzymes & 1 creon 10 enzyme with each meal
(2 Creon 20's enzymes with any snack throughout the day)
Prevacid with breakfast (right after enzymes) 15 mgs
Zithromax- 1 tsp. every Monday, Wednesday and Friday
Vitamin C- 500 mgs
Nasonex Nasal Spray- 2 squirts in each nostril
Dexamethasone Nasal Spray- 2 squirts each side
Nasal wash with distilled water in the shower
Ocean spray- squirt in each nostril 2-3 times daily
9:00 a.m. 10mgs of Adderall (started 3/19/08) Stopped thru summertime.

LUNCH
2nd Breathing Treatment for the day: (around 11:30 a.m. and 12:00 p.m.)
(If at school Brady does an albuterol inhaler with an aeorchamber.) If not at school he does this: .25 cc's of albuterol with 2 cc's broncho saline in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
LUNCH MEDICATIONS:
2 Creon 20 enzymes & 1 creon 10 enzyme with meal
Between 11:30 & 12:00 p.m. Cyproheptadine (substituted for Periatin) 10 ML'S

MID-DAY
3rd breathing treatment for the day: (around 3:30 p.m. and 4:00 p.m.)

1. .25cc's of albuterol w/ 2 cc's of .9% sodium chloride (broncho saline) in a regular mask USE VEST for 20 MINUTES

YOU NEED TO WAIT 10-15 MINUTES AFTER THE ALBUTEROL TREATMENT BEFORE STARTING THE HTS TREATMENT

2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of
10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.

MID-DAY MEDICATION'S
17 grams of Miralax in 8 oz of juice
(2 Creon 20's enzymes with snacks)
Between 3:30- 4:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's


SUPPER
15 mgs of Prevacid
2 Creon 20 enzymes & 1 creon 10 enzyme with each meal

NIGHT
4th Breathing treatment: (usually around 8:00- 8:30 p.m.)
2 ml's of Pulmicort w/ .25 cc's of albuterol in regular mask USE VEST for 20 MINUTES

NIGHT MEDICATION'S
2 tsp of lactulose
Nasal wash with distilled water
(2 Creon 20's enzymes with snacks)
Nasonex Nasal Spray- 2 squirts in each nostril
Dexamethasone Nasal Spray- 2 squirts each side
Between 8:30- 9:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's


NIGHT FEEDING
9 hours of continuous feeding- 4 cans of pediasure
2 Creon 20's and 1 Creon 10 before hook-up at night, then give 2 Creon 20's and 1 Creon 10 in the morning after unhooking from night feeding.


Editted: I have to agree completely with MicheleGazelle about the financial part. I have stayed at home with my child with Cf for the last 3 yrs. He has had numerous surgeries and hospital admits which I stay with him the whole time. It is hard to find a job that will work around that. I had a terrific job in a real estate company and it just got to be too much. It is a full time job just dealing with the bills brought on by the disease, calling hte insurance company- normally daily, keeping up with medications & the every day maintenance of the disease. It is hard enough to be fighting it daily let alone financially being drained. My husband often feels very frustrated because we could be doing really good for ourselves money wise if it weren't for CF. It stinks that it alters our life so much. You really can't explain it fully unless you are living it. People need to be thankful that are healthy because they really have no clue what living with CF is like!


Fourkidsmom

 

[fourkidsmom]

Dee- CF is very time consuming on the family. Here is a list of my son's daily routine. Not included are the 2 hour one way CF doctor, and ENT and surgeon doctor visits. PM me if you have further questions.

BRADY'S DAILY MEDICATIONS -
MORNING:
1st breathing treatment:
Morning around 7:00 a.m. - 7:30 a.m.
1. .25 cc's of albuterol with 2 ml's (.5)pulmicort in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
(You should wait 10 to 15 minutes after the albuterol mask to start the HTS Mask. Need to allow the albuterol to open the airways for the HTS treatment.

2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of 10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.

3. Pulmozyme (2.5 mls) in Pari (fish) mask

MORNING MEDICATIONS:
Between 7:30-8:00 a.m. - Cyproheptadine (substituted for Periatin) 10ml's (4 times daily- usually right around BT time/every 4 hours)
2 tsp of lactulose
1 tablet of ADEKS vitamin
1 400 I.U. of Vitamin E
2 Creon 20 enzymes & 1 creon 10 enzyme with each meal
(2 Creon 20's enzymes with any snack throughout the day)
Prevacid with breakfast (right after enzymes) 15 mgs
Zithromax- 1 tsp. every Monday, Wednesday and Friday
Vitamin C- 500 mgs
Nasonex Nasal Spray- 2 squirts in each nostril
Dexamethasone Nasal Spray- 2 squirts each side
Nasal wash with distilled water in the shower
Ocean spray- squirt in each nostril 2-3 times daily
9:00 a.m. 10mgs of Adderall (started 3/19/08) Stopped thru summertime.

LUNCH
2nd Breathing Treatment for the day: (around 11:30 a.m. and 12:00 p.m.)
(If at school Brady does an albuterol inhaler with an aeorchamber.) If not at school he does this: .25 cc's of albuterol with 2 cc's broncho saline in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
LUNCH MEDICATIONS:
2 Creon 20 enzymes & 1 creon 10 enzyme with meal
Between 11:30 & 12:00 p.m. Cyproheptadine (substituted for Periatin) 10 ML'S

MID-DAY
3rd breathing treatment for the day: (around 3:30 p.m. and 4:00 p.m.)

1. .25cc's of albuterol w/ 2 cc's of .9% sodium chloride (broncho saline) in a regular mask USE VEST for 20 MINUTES

YOU NEED TO WAIT 10-15 MINUTES AFTER THE ALBUTEROL TREATMENT BEFORE STARTING THE HTS TREATMENT

2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of
10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.

MID-DAY MEDICATION'S
17 grams of Miralax in 8 oz of juice
(2 Creon 20's enzymes with snacks)
Between 3:30- 4:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's


SUPPER
15 mgs of Prevacid
2 Creon 20 enzymes & 1 creon 10 enzyme with each meal

NIGHT
4th Breathing treatment: (usually around 8:00- 8:30 p.m.)
2 ml's of Pulmicort w/ .25 cc's of albuterol in regular mask USE VEST for 20 MINUTES

NIGHT MEDICATION'S
2 tsp of lactulose
Nasal wash with distilled water
(2 Creon 20's enzymes with snacks)
Nasonex Nasal Spray- 2 squirts in each nostril
Dexamethasone Nasal Spray- 2 squirts each side
Between 8:30- 9:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's


NIGHT FEEDING
9 hours of continuous feeding- 4 cans of pediasure
2 Creon 20's and 1 Creon 10 before hook-up at night, then give 2 Creon 20's and 1 Creon 10 in the morning after unhooking from night feeding.


Editted: I have to agree completely with MicheleGazelle about the financial part. I have stayed at home with my child with Cf for the last 3 yrs. He has had numerous surgeries and hospital admits which I stay with him the whole time. It is hard to find a job that will work around that. I had a terrific job in a real estate company and it just got to be too much. It is a full time job just dealing with the bills brought on by the disease, calling hte insurance company- normally daily, keeping up with medications & the every day maintenance of the disease. It is hard enough to be fighting it daily let alone financially being drained. My husband often feels very frustrated because we could be doing really good for ourselves money wise if it weren't for CF. It stinks that it alters our life so much. You really can't explain it fully unless you are living it. People need to be thankful that are healthy because they really have no clue what living with CF is like!


Fourkidsmom

 

[fourkidsmom]

Dee- CF is very time consuming on the family. Here is a list of my son's daily routine. Not included are the 2 hour one way CF doctor, and ENT and surgeon doctor visits. PM me if you have further questions.
<br />
<br />BRADY'S DAILY MEDICATIONS -
<br />MORNING:
<br />1st breathing treatment:
<br />Morning around 7:00 a.m. - 7:30 a.m.
<br />1. .25 cc's of albuterol with 2 ml's (.5)pulmicort in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
<br />(You should wait 10 to 15 minutes after the albuterol mask to start the HTS Mask. Need to allow the albuterol to open the airways for the HTS treatment.
<br />
<br />2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of 10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.
<br />
<br />3. Pulmozyme (2.5 mls) in Pari (fish) mask
<br />
<br />MORNING MEDICATIONS:
<br />Between 7:30-8:00 a.m. - Cyproheptadine (substituted for Periatin) 10ml's (4 times daily- usually right around BT time/every 4 hours)
<br />2 tsp of lactulose
<br />1 tablet of ADEKS vitamin
<br />1 400 I.U. of Vitamin E
<br />2 Creon 20 enzymes & 1 creon 10 enzyme with each meal
<br />(2 Creon 20's enzymes with any snack throughout the day)
<br />Prevacid with breakfast (right after enzymes) 15 mgs
<br />Zithromax- 1 tsp. every Monday, Wednesday and Friday
<br />Vitamin C- 500 mgs
<br />Nasonex Nasal Spray- 2 squirts in each nostril
<br />Dexamethasone Nasal Spray- 2 squirts each side
<br />Nasal wash with distilled water in the shower
<br />Ocean spray- squirt in each nostril 2-3 times daily
<br />9:00 a.m. 10mgs of Adderall (started 3/19/08) Stopped thru summertime.
<br />
<br />LUNCH
<br />2nd Breathing Treatment for the day: (around 11:30 a.m. and 12:00 p.m.)
<br />(If at school Brady does an albuterol inhaler with an aeorchamber.) If not at school he does this: .25 cc's of albuterol with 2 cc's broncho saline in regular mask. START VEST WITH THIS- DO VEST FOR 20 MINUTES TOTAL STRAIGHT THRU
<br /> LUNCH MEDICATIONS:
<br />2 Creon 20 enzymes & 1 creon 10 enzyme with meal
<br />Between 11:30 & 12:00 p.m. Cyproheptadine (substituted for Periatin) 10 ML'S
<br />
<br />MID-DAY
<br />3rd breathing treatment for the day: (around 3:30 p.m. and 4:00 p.m.)
<br />
<br />1. .25cc's of albuterol w/ 2 cc's of .9% sodium chloride (broncho saline) in a regular mask USE VEST for 20 MINUTES
<br />
<br />YOU NEED TO WAIT 10-15 MINUTES AFTER THE ALBUTEROL TREATMENT BEFORE STARTING THE HTS TREATMENT
<br />
<br />2. Hypertonic Solution (HTS) 3 ml of .9% sodium chloride solution with 6 ml of
<br />10% sodium chloride solution. Put both solutions in sterile syringe (you'll need to tighten the tip so it doesn't leak out solution) and shake in sterile syringe, squirt 4 ml of the mixture into HTS Pari (fish) mask. Dispose of ALL the left over solution. Brady inhales the 4 ml's only.
<br />
<br />MID-DAY MEDICATION'S
<br />17 grams of Miralax in 8 oz of juice
<br />(2 Creon 20's enzymes with snacks)
<br />Between 3:30- 4:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's
<br />
<br />
<br />SUPPER
<br />15 mgs of Prevacid
<br />2 Creon 20 enzymes & 1 creon 10 enzyme with each meal
<br />
<br />NIGHT
<br />4th Breathing treatment: (usually around 8:00- 8:30 p.m.)
<br />2 ml's of Pulmicort w/ .25 cc's of albuterol in regular mask USE VEST for 20 MINUTES
<br />
<br />NIGHT MEDICATION'S
<br />2 tsp of lactulose
<br />Nasal wash with distilled water
<br />(2 Creon 20's enzymes with snacks)
<br />Nasonex Nasal Spray- 2 squirts in each nostril
<br />Dexamethasone Nasal Spray- 2 squirts each side
<br />Between 8:30- 9:00 p.m. Cyproheptadine (substituted for Periatin) 10ml's
<br />
<br />
<br />NIGHT FEEDING
<br />9 hours of continuous feeding- 4 cans of pediasure
<br />2 Creon 20's and 1 Creon 10 before hook-up at night, then give 2 Creon 20's and 1 Creon 10 in the morning after unhooking from night feeding.
<br />
<br />
<br />Editted: I have to agree completely with MicheleGazelle about the financial part. I have stayed at home with my child with Cf for the last 3 yrs. He has had numerous surgeries and hospital admits which I stay with him the whole time. It is hard to find a job that will work around that. I had a terrific job in a real estate company and it just got to be too much. It is a full time job just dealing with the bills brought on by the disease, calling hte insurance company- normally daily, keeping up with medications & the every day maintenance of the disease. It is hard enough to be fighting it daily let alone financially being drained. My husband often feels very frustrated because we could be doing really good for ourselves money wise if it weren't for CF. It stinks that it alters our life so much. You really can't explain it fully unless you are living it. People need to be thankful that are healthy because they really have no clue what living with CF is like!
<br />
<br />
<br />Fourkidsmom