help

[marcangeldelcielo]

Hi! I have a 2 1/2 years old boy who was diagnose at birth with CF. Two weeks ago his doc. order to get done a bronchoscopy to take a look at his lungs. this is the second time that they have done it he had one last year. Well they found that he had culture some Pseudomonas but not much and gave him sulfatrim to take or 3weeks, then a week later they call me and say that since they found inflamation on his lungs he needed to take Azithromycin for the reast of his life every three days ones a day(Mon.Wed.Thur.). They also mention that on the next appointment they will thatlk to us about giving him another treatment but for know just to start with what they have just order. What I'm consurn about is if this means that his health is getting worse because he has not been sick at all and he is very active and no cough or sound on his lungs. Im so confused about all this that I need someone else opinion or need to know if any of your kids are taking any of this medication and what are the reaction on taking so many medicines in a day? Please help me understand all this and at the same time have some hope that he will grow up to be a adult. I been dipress since they call me but I will do anything for my son to fight CF and keep him healthy.
Mom to Marcos with CF

 

[marcangeldelcielo]

Hi! I have a 2 1/2 years old boy who was diagnose at birth with CF. Two weeks ago his doc. order to get done a bronchoscopy to take a look at his lungs. this is the second time that they have done it he had one last year. Well they found that he had culture some Pseudomonas but not much and gave him sulfatrim to take or 3weeks, then a week later they call me and say that since they found inflamation on his lungs he needed to take Azithromycin for the reast of his life every three days ones a day(Mon.Wed.Thur.). They also mention that on the next appointment they will thatlk to us about giving him another treatment but for know just to start with what they have just order. What I'm consurn about is if this means that his health is getting worse because he has not been sick at all and he is very active and no cough or sound on his lungs. Im so confused about all this that I need someone else opinion or need to know if any of your kids are taking any of this medication and what are the reaction on taking so many medicines in a day? Please help me understand all this and at the same time have some hope that he will grow up to be a adult. I been dipress since they call me but I will do anything for my son to fight CF and keep him healthy.
Mom to Marcos with CF

 

[marcangeldelcielo]

Hi! I have a 2 1/2 years old boy who was diagnose at birth with CF. Two weeks ago his doc. order to get done a bronchoscopy to take a look at his lungs. this is the second time that they have done it he had one last year. Well they found that he had culture some Pseudomonas but not much and gave him sulfatrim to take or 3weeks, then a week later they call me and say that since they found inflamation on his lungs he needed to take Azithromycin for the reast of his life every three days ones a day(Mon.Wed.Thur.). They also mention that on the next appointment they will thatlk to us about giving him another treatment but for know just to start with what they have just order. What I'm consurn about is if this means that his health is getting worse because he has not been sick at all and he is very active and no cough or sound on his lungs. Im so confused about all this that I need someone else opinion or need to know if any of your kids are taking any of this medication and what are the reaction on taking so many medicines in a day? Please help me understand all this and at the same time have some hope that he will grow up to be a adult. I been dipress since they call me but I will do anything for my son to fight CF and keep him healthy.
Mom to Marcos with CF

 

[marcangeldelcielo]

Hi! I have a 2 1/2 years old boy who was diagnose at birth with CF. Two weeks ago his doc. order to get done a bronchoscopy to take a look at his lungs. this is the second time that they have done it he had one last year. Well they found that he had culture some Pseudomonas but not much and gave him sulfatrim to take or 3weeks, then a week later they call me and say that since they found inflamation on his lungs he needed to take Azithromycin for the reast of his life every three days ones a day(Mon.Wed.Thur.). They also mention that on the next appointment they will thatlk to us about giving him another treatment but for know just to start with what they have just order. What I'm consurn about is if this means that his health is getting worse because he has not been sick at all and he is very active and no cough or sound on his lungs. Im so confused about all this that I need someone else opinion or need to know if any of your kids are taking any of this medication and what are the reaction on taking so many medicines in a day? Please help me understand all this and at the same time have some hope that he will grow up to be a adult. I been dipress since they call me but I will do anything for my son to fight CF and keep him healthy.
Mom to Marcos with CF

 

[marcangeldelcielo]

Hi! I have a 2 1/2 years old boy who was diagnose at birth with CF. Two weeks ago his doc. order to get done a bronchoscopy to take a look at his lungs. this is the second time that they have done it he had one last year. Well they found that he had culture some Pseudomonas but not much and gave him sulfatrim to take or 3weeks, then a week later they call me and say that since they found inflamation on his lungs he needed to take Azithromycin for the reast of his life every three days ones a day(Mon.Wed.Thur.). They also mention that on the next appointment they will thatlk to us about giving him another treatment but for know just to start with what they have just order. What I'm consurn about is if this means that his health is getting worse because he has not been sick at all and he is very active and no cough or sound on his lungs. Im so confused about all this that I need someone else opinion or need to know if any of your kids are taking any of this medication and what are the reaction on taking so many medicines in a day? Please help me understand all this and at the same time have some hope that he will grow up to be a adult. I been dipress since they call me but I will do anything for my son to fight CF and keep him healthy.
Mom to Marcos with CF

 

[JazzysMom]

Believe it or not what you described is maintenance type stuff.

Keeping a close eye on whats growing or inflamed, treatment of what bacteria is found, kicking up to another treatment.......all this is to minimize any lung damage and keep his health as good as possible for as long as possible.

It does seem like a lot especially if someone who is not familiar with CF hears about it, but it really is all part of the daily maintenance. Think of it as different type of food for the body......a CF body.

I cant tell you not to be scared because that would be a foolish request on my part. You are a Mom and Moms worry.

Speaking as an ADULT CFer who is doing pretty darn well considering I didnt have the advantage of a lot of the preventive things available to your child at his age...........one day at a time.

HUGS

 

[JazzysMom]

Believe it or not what you described is maintenance type stuff.

Keeping a close eye on whats growing or inflamed, treatment of what bacteria is found, kicking up to another treatment.......all this is to minimize any lung damage and keep his health as good as possible for as long as possible.

It does seem like a lot especially if someone who is not familiar with CF hears about it, but it really is all part of the daily maintenance. Think of it as different type of food for the body......a CF body.

I cant tell you not to be scared because that would be a foolish request on my part. You are a Mom and Moms worry.

Speaking as an ADULT CFer who is doing pretty darn well considering I didnt have the advantage of a lot of the preventive things available to your child at his age...........one day at a time.

HUGS

 

[JazzysMom]

Believe it or not what you described is maintenance type stuff.

Keeping a close eye on whats growing or inflamed, treatment of what bacteria is found, kicking up to another treatment.......all this is to minimize any lung damage and keep his health as good as possible for as long as possible.

It does seem like a lot especially if someone who is not familiar with CF hears about it, but it really is all part of the daily maintenance. Think of it as different type of food for the body......a CF body.

I cant tell you not to be scared because that would be a foolish request on my part. You are a Mom and Moms worry.

Speaking as an ADULT CFer who is doing pretty darn well considering I didnt have the advantage of a lot of the preventive things available to your child at his age...........one day at a time.

HUGS

 

[JazzysMom]

Believe it or not what you described is maintenance type stuff.

Keeping a close eye on whats growing or inflamed, treatment of what bacteria is found, kicking up to another treatment.......all this is to minimize any lung damage and keep his health as good as possible for as long as possible.

It does seem like a lot especially if someone who is not familiar with CF hears about it, but it really is all part of the daily maintenance. Think of it as different type of food for the body......a CF body.

I cant tell you not to be scared because that would be a foolish request on my part. You are a Mom and Moms worry.

Speaking as an ADULT CFer who is doing pretty darn well considering I didnt have the advantage of a lot of the preventive things available to your child at his age...........one day at a time.

HUGS

 

[JazzysMom]

Believe it or not what you described is maintenance type stuff.

Keeping a close eye on whats growing or inflamed, treatment of what bacteria is found, kicking up to another treatment.......all this is to minimize any lung damage and keep his health as good as possible for as long as possible.

It does seem like a lot especially if someone who is not familiar with CF hears about it, but it really is all part of the daily maintenance. Think of it as different type of food for the body......a CF body.

I cant tell you not to be scared because that would be a foolish request on my part. You are a Mom and Moms worry.

Speaking as an ADULT CFer who is doing pretty darn well considering I didnt have the advantage of a lot of the preventive things available to your child at his age...........one day at a time.

HUGS

 

[Ratatosk]

Sometimes I get fed up with all the different meds DS is on and when another one is added, it just brings home the fact that he really DOES have CF. Sounds as if your doctor/clinic is being proactive and is trying to stay on top of things to keep your child healthy. The med they probably mentioned for the pseudo is Tobi -- a nebulized antibiotic.

Zithromax in CFers is given to them to decrease inflammation and not really for the antibiotic properties. DS has been on it since he was 2 1/2 and it annoyed me to no end that yet another drug was added to the mix. Sulfatrim was added this summer when he cultured steno malt. Last week I was a little bummed because we work so hard to keep DS healthy -- meds, CPT/vest, nebulizer treatments, numerous medications and he STILL gets a cough and his doctor adds yet another med. Because he's still so young most of his meds are suspensions, so right now I prepare 14 oral syringes each day -- zithromax once a day, vitamin drops twice a day, septra twice a day....

I try to look at the big picture. As disheartening as all this is -- the meds, the treatments, etc. -- we'll do whatever we can to ensure that DS leads a happy, healthy, normal life. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

Sometimes I get fed up with all the different meds DS is on and when another one is added, it just brings home the fact that he really DOES have CF. Sounds as if your doctor/clinic is being proactive and is trying to stay on top of things to keep your child healthy. The med they probably mentioned for the pseudo is Tobi -- a nebulized antibiotic.

Zithromax in CFers is given to them to decrease inflammation and not really for the antibiotic properties. DS has been on it since he was 2 1/2 and it annoyed me to no end that yet another drug was added to the mix. Sulfatrim was added this summer when he cultured steno malt. Last week I was a little bummed because we work so hard to keep DS healthy -- meds, CPT/vest, nebulizer treatments, numerous medications and he STILL gets a cough and his doctor adds yet another med. Because he's still so young most of his meds are suspensions, so right now I prepare 14 oral syringes each day -- zithromax once a day, vitamin drops twice a day, septra twice a day....

I try to look at the big picture. As disheartening as all this is -- the meds, the treatments, etc. -- we'll do whatever we can to ensure that DS leads a happy, healthy, normal life. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

Sometimes I get fed up with all the different meds DS is on and when another one is added, it just brings home the fact that he really DOES have CF. Sounds as if your doctor/clinic is being proactive and is trying to stay on top of things to keep your child healthy. The med they probably mentioned for the pseudo is Tobi -- a nebulized antibiotic.

Zithromax in CFers is given to them to decrease inflammation and not really for the antibiotic properties. DS has been on it since he was 2 1/2 and it annoyed me to no end that yet another drug was added to the mix. Sulfatrim was added this summer when he cultured steno malt. Last week I was a little bummed because we work so hard to keep DS healthy -- meds, CPT/vest, nebulizer treatments, numerous medications and he STILL gets a cough and his doctor adds yet another med. Because he's still so young most of his meds are suspensions, so right now I prepare 14 oral syringes each day -- zithromax once a day, vitamin drops twice a day, septra twice a day....

I try to look at the big picture. As disheartening as all this is -- the meds, the treatments, etc. -- we'll do whatever we can to ensure that DS leads a happy, healthy, normal life. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

Sometimes I get fed up with all the different meds DS is on and when another one is added, it just brings home the fact that he really DOES have CF. Sounds as if your doctor/clinic is being proactive and is trying to stay on top of things to keep your child healthy. The med they probably mentioned for the pseudo is Tobi -- a nebulized antibiotic.

Zithromax in CFers is given to them to decrease inflammation and not really for the antibiotic properties. DS has been on it since he was 2 1/2 and it annoyed me to no end that yet another drug was added to the mix. Sulfatrim was added this summer when he cultured steno malt. Last week I was a little bummed because we work so hard to keep DS healthy -- meds, CPT/vest, nebulizer treatments, numerous medications and he STILL gets a cough and his doctor adds yet another med. Because he's still so young most of his meds are suspensions, so right now I prepare 14 oral syringes each day -- zithromax once a day, vitamin drops twice a day, septra twice a day....

I try to look at the big picture. As disheartening as all this is -- the meds, the treatments, etc. -- we'll do whatever we can to ensure that DS leads a happy, healthy, normal life. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

Sometimes I get fed up with all the different meds DS is on and when another one is added, it just brings home the fact that he really DOES have CF. Sounds as if your doctor/clinic is being proactive and is trying to stay on top of things to keep your child healthy. The med they probably mentioned for the pseudo is Tobi -- a nebulized antibiotic.

Zithromax in CFers is given to them to decrease inflammation and not really for the antibiotic properties. DS has been on it since he was 2 1/2 and it annoyed me to no end that yet another drug was added to the mix. Sulfatrim was added this summer when he cultured steno malt. Last week I was a little bummed because we work so hard to keep DS healthy -- meds, CPT/vest, nebulizer treatments, numerous medications and he STILL gets a cough and his doctor adds yet another med. Because he's still so young most of his meds are suspensions, so right now I prepare 14 oral syringes each day -- zithromax once a day, vitamin drops twice a day, septra twice a day....

I try to look at the big picture. As disheartening as all this is -- the meds, the treatments, etc. -- we'll do whatever we can to ensure that DS leads a happy, healthy, normal life. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JORDYSMOM]

It all was very overwhelming for me when my son was first diagnosed. There was so much to remember and so many meds. I went out and bought colored stickers and made a chart of what color he got at what times each day. It was crazy! I used to think I was pretty well educated about medications, how they worked, what they were for etc. HA! It really does get easier. Hang in there.

Stacey

 

[JORDYSMOM]

It all was very overwhelming for me when my son was first diagnosed. There was so much to remember and so many meds. I went out and bought colored stickers and made a chart of what color he got at what times each day. It was crazy! I used to think I was pretty well educated about medications, how they worked, what they were for etc. HA! It really does get easier. Hang in there.

Stacey

 

[JORDYSMOM]

It all was very overwhelming for me when my son was first diagnosed. There was so much to remember and so many meds. I went out and bought colored stickers and made a chart of what color he got at what times each day. It was crazy! I used to think I was pretty well educated about medications, how they worked, what they were for etc. HA! It really does get easier. Hang in there.

Stacey

 

[JORDYSMOM]

It all was very overwhelming for me when my son was first diagnosed. There was so much to remember and so many meds. I went out and bought colored stickers and made a chart of what color he got at what times each day. It was crazy! I used to think I was pretty well educated about medications, how they worked, what they were for etc. HA! It really does get easier. Hang in there.

Stacey

 

[JORDYSMOM]

It all was very overwhelming for me when my son was first diagnosed. There was so much to remember and so many meds. I went out and bought colored stickers and made a chart of what color he got at what times each day. It was crazy! I used to think I was pretty well educated about medications, how they worked, what they were for etc. HA! It really does get easier. Hang in there.

Stacey