we're new...does this sound right?

L

LMK

New member
Hi everyone, I have been lurking here since November. My daughter & I have both been diagnosed this month. The information here has been the best! Way better than the 25 Dr. visits or online research! I am so grateful to all of you for sharing your stories. They classify my CF as 'mild' (+ psuedo a. & staph) and my daughter they are less sure they (+ staph) she has moderate lung & sinus involvement. She is 8.

Anyway, they are starting her on High-dose Ibuprofen, Pulmozyme, antihistimine, decongestant, we learn about airway clearance next week. Diet to gain a couple of lbs.

Does this sound right? too aggressive? She feels great right now except for stuffy & chronic dry cough.

Thanks .
 
L

LMK

New member
Hi everyone, I have been lurking here since November. My daughter & I have both been diagnosed this month. The information here has been the best! Way better than the 25 Dr. visits or online research! I am so grateful to all of you for sharing your stories. They classify my CF as 'mild' (+ psuedo a. & staph) and my daughter they are less sure they (+ staph) she has moderate lung & sinus involvement. She is 8.

Anyway, they are starting her on High-dose Ibuprofen, Pulmozyme, antihistimine, decongestant, we learn about airway clearance next week. Diet to gain a couple of lbs.

Does this sound right? too aggressive? She feels great right now except for stuffy & chronic dry cough.

Thanks .
 
L

LMK

New member
Hi everyone, I have been lurking here since November. My daughter & I have both been diagnosed this month. The information here has been the best! Way better than the 25 Dr. visits or online research! I am so grateful to all of you for sharing your stories. They classify my CF as 'mild' (+ psuedo a. & staph) and my daughter they are less sure they (+ staph) she has moderate lung & sinus involvement. She is 8.

Anyway, they are starting her on High-dose Ibuprofen, Pulmozyme, antihistimine, decongestant, we learn about airway clearance next week. Diet to gain a couple of lbs.

Does this sound right? too aggressive? She feels great right now except for stuffy & chronic dry cough.

Thanks .
 
D

Diane

New member
Hi and welcome to the site <img src="i/expressions/face-icon-small-smile.gif" border="0">
The high dose Ibuprofen is for inflammation , which is a problem in cf. Pulmozyme will help to loosen secretions, and antihistamine and decongestant should help some of her sinus issues. I would say all those sound like good protocol . Does she have any digestion issues? Did they give her enzymes? In answer to your question, the combo sounds right to me, and not too aggressive at all.
 
D

Diane

New member
Hi and welcome to the site <img src="i/expressions/face-icon-small-smile.gif" border="0">
The high dose Ibuprofen is for inflammation , which is a problem in cf. Pulmozyme will help to loosen secretions, and antihistamine and decongestant should help some of her sinus issues. I would say all those sound like good protocol . Does she have any digestion issues? Did they give her enzymes? In answer to your question, the combo sounds right to me, and not too aggressive at all.
 
D

Diane

New member
Hi and welcome to the site <img src="i/expressions/face-icon-small-smile.gif" border="0">
The high dose Ibuprofen is for inflammation , which is a problem in cf. Pulmozyme will help to loosen secretions, and antihistamine and decongestant should help some of her sinus issues. I would say all those sound like good protocol . Does she have any digestion issues? Did they give her enzymes? In answer to your question, the combo sounds right to me, and not too aggressive at all.
 
L

lightNlife

New member
Sounds about right. You may want to add some Prilosec OTC with that dose of ibuprofen, since Ibuprofen in high doses is tough on the stomach.

As far as the cough, there are some people who have a constant dry cough and others whose coughs are very wet and "junky" sounding. I usually have a dry cough even when I'm sick, so for me I've learned how to read my body signals in other ways.

Best wishes to you both. This is a hard diagnosis to handle. There will be good days and bad days as you work on wrapping your head around all the information. I hope to be able to encourage you both as you need it in the days, weeks, years to come.

Warmest regards,
Lauren


<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com"> Breathing Deeply: My Life with CF</a>
 
L

lightNlife

New member
Sounds about right. You may want to add some Prilosec OTC with that dose of ibuprofen, since Ibuprofen in high doses is tough on the stomach.

As far as the cough, there are some people who have a constant dry cough and others whose coughs are very wet and "junky" sounding. I usually have a dry cough even when I'm sick, so for me I've learned how to read my body signals in other ways.

Best wishes to you both. This is a hard diagnosis to handle. There will be good days and bad days as you work on wrapping your head around all the information. I hope to be able to encourage you both as you need it in the days, weeks, years to come.

Warmest regards,
Lauren


<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com"> Breathing Deeply: My Life with CF</a>
 
L

lightNlife

New member
Sounds about right. You may want to add some Prilosec OTC with that dose of ibuprofen, since Ibuprofen in high doses is tough on the stomach.

As far as the cough, there are some people who have a constant dry cough and others whose coughs are very wet and "junky" sounding. I usually have a dry cough even when I'm sick, so for me I've learned how to read my body signals in other ways.

Best wishes to you both. This is a hard diagnosis to handle. There will be good days and bad days as you work on wrapping your head around all the information. I hope to be able to encourage you both as you need it in the days, weeks, years to come.

Warmest regards,
Lauren


<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com"> Breathing Deeply: My Life with CF</a>
 
J

JustDucky

New member
Hello, everyone here has given great answers. I am sure that if new issues arise, your meds will be tweaked here and there. I am curious, yourself and your daughter were diagnosed at the same time? Wow, that must have been a shocker! What made the docs want to test you as well besides your daughter? I wish both of you the best, you will have days that are ups and downs. Days that will be smooth and days that will be frustrating. All in all, it is a whole new routine to get used to with so much to learn. I know...I am fairly new to the CF scene myself, diagnosed at about 33. It was tough and still is tough sometimes to get used to all of t he meds and routines. Hugs to both of you, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
PS...Holler if you have questions, there are alot of wonderful people here who can definitely help you through any issues you may have.
 
J

JustDucky

New member
Hello, everyone here has given great answers. I am sure that if new issues arise, your meds will be tweaked here and there. I am curious, yourself and your daughter were diagnosed at the same time? Wow, that must have been a shocker! What made the docs want to test you as well besides your daughter? I wish both of you the best, you will have days that are ups and downs. Days that will be smooth and days that will be frustrating. All in all, it is a whole new routine to get used to with so much to learn. I know...I am fairly new to the CF scene myself, diagnosed at about 33. It was tough and still is tough sometimes to get used to all of t he meds and routines. Hugs to both of you, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
PS...Holler if you have questions, there are alot of wonderful people here who can definitely help you through any issues you may have.
 
J

JustDucky

New member
Hello, everyone here has given great answers. I am sure that if new issues arise, your meds will be tweaked here and there. I am curious, yourself and your daughter were diagnosed at the same time? Wow, that must have been a shocker! What made the docs want to test you as well besides your daughter? I wish both of you the best, you will have days that are ups and downs. Days that will be smooth and days that will be frustrating. All in all, it is a whole new routine to get used to with so much to learn. I know...I am fairly new to the CF scene myself, diagnosed at about 33. It was tough and still is tough sometimes to get used to all of t he meds and routines. Hugs to both of you, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
PS...Holler if you have questions, there are alot of wonderful people here who can definitely help you through any issues you may have.
 
R

robert321

New member
that coctail of drugs sounds about right, same boat we're all in, instead of the high dose of ibuprophen though my dr put me on azythromysin (those z pac things that the dr gives all the time) all the time and it works as an anti inflamatory and an antibiotic as well to nip any infection in the butt before it becomes a problem, did they put you on albuterol, usually the drs put you on albuterol to do before the pulmosime, cf is a tough thing to deal with hope you are handling it well, reserch when you can but don't dwell on the cf, it just screws up your life, don't let the cf get in the way of your life, just concider it when you plan things.
 
R

robert321

New member
that coctail of drugs sounds about right, same boat we're all in, instead of the high dose of ibuprophen though my dr put me on azythromysin (those z pac things that the dr gives all the time) all the time and it works as an anti inflamatory and an antibiotic as well to nip any infection in the butt before it becomes a problem, did they put you on albuterol, usually the drs put you on albuterol to do before the pulmosime, cf is a tough thing to deal with hope you are handling it well, reserch when you can but don't dwell on the cf, it just screws up your life, don't let the cf get in the way of your life, just concider it when you plan things.
 
R

robert321

New member
that coctail of drugs sounds about right, same boat we're all in, instead of the high dose of ibuprophen though my dr put me on azythromysin (those z pac things that the dr gives all the time) all the time and it works as an anti inflamatory and an antibiotic as well to nip any infection in the butt before it becomes a problem, did they put you on albuterol, usually the drs put you on albuterol to do before the pulmosime, cf is a tough thing to deal with hope you are handling it well, reserch when you can but don't dwell on the cf, it just screws up your life, don't let the cf get in the way of your life, just concider it when you plan things.
 
L

luke

Guest
LMH,

The antihistamine is a bit of a no no, they dry our sections and that is not what you need at all. Probably a better drug would be singular, it kinda does the same thing and also seems to have some anti-inflammatory properties.


luke, rrt
 
L

luke

Guest
LMH,

The antihistamine is a bit of a no no, they dry our sections and that is not what you need at all. Probably a better drug would be singular, it kinda does the same thing and also seems to have some anti-inflammatory properties.


luke, rrt
 
L

luke

Guest
LMH,

The antihistamine is a bit of a no no, they dry our sections and that is not what you need at all. Probably a better drug would be singular, it kinda does the same thing and also seems to have some anti-inflammatory properties.


luke, rrt
 
L

LouLou

New member
The two things I would question are:

antihistimine (generally a no-no with cf because it dries mucus that we want to keep thin so we can move it out of our lungs)

high dose ibuprofen (I thought this was tested years ago not be as effective as azithromycin...not to mention the side effects. I could be wrong but I don't remember people saying on here that they are still doing it)
 
L

LouLou

New member
The two things I would question are:

antihistimine (generally a no-no with cf because it dries mucus that we want to keep thin so we can move it out of our lungs)

high dose ibuprofen (I thought this was tested years ago not be as effective as azithromycin...not to mention the side effects. I could be wrong but I don't remember people saying on here that they are still doing it)
 
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