Treatments for child under 1yr

[purplemartin]

Question for parents of children with CF <b>under the age of
one</b>.  <br>
<br>
What is your child's daily treatment consisting of? Just curious as
my son's clinic seems to go with the "wait and see"
approach instead of being proactive with this disease.  <br>
<br>
My son's treatment:<br>
<br>
Currently my son (4mos.) is on Creon 5, ADEK, Reglan, Prevacid, and
CPT 15 minutes twice a day.  He has done three weeks of IV
infusions and 3 different times on oral antibiotics in the
past.<br>
<br>
Thanks<br>
<br>
  

 

[purplemartin]

Question for parents of children with CF <b>under the age of
one</b>.  <br>
<br>
What is your child's daily treatment consisting of? Just curious as
my son's clinic seems to go with the "wait and see"
approach instead of being proactive with this disease.  <br>
<br>
My son's treatment:<br>
<br>
Currently my son (4mos.) is on Creon 5, ADEK, Reglan, Prevacid, and
CPT 15 minutes twice a day.  He has done three weeks of IV
infusions and 3 different times on oral antibiotics in the
past.<br>
<br>
Thanks<br>
<br>
  

 

[purplemartin]

Question for parents of children with CF <b>under the age of
one</b>.  <br>
<br>
What is your child's daily treatment consisting of? Just curious as
my son's clinic seems to go with the "wait and see"
approach instead of being proactive with this disease.  <br>
<br>
My son's treatment:<br>
<br>
Currently my son (4mos.) is on Creon 5, ADEK, Reglan, Prevacid, and
CPT 15 minutes twice a day.  He has done three weeks of IV
infusions and 3 different times on oral antibiotics in the
past.<br>
<br>
Thanks<br>
<br>
  

 

[Ratatosk]

My son is also double df508 and diagnosed at birth. When he was your son's age he was on keflex 4x a day, pancrease mt4s, actigall 3x a day, adeks twice a day, zantac twice a day. We did cpt for 15 minutes a day -- 3 times a day (6 am, 5:30 pm & 10 pm) with albuterol & atrovent nebulized. He cultured pseudo at 3 months, so he was on Tobi every other months.

Our CF clinic in the city is very proactive and prescribed the above regimine. Local clinic --- we were discouraged from using antibiotics, including tobi. Discouraged from using CPT and bronchiodialators.

 

[Ratatosk]

My son is also double df508 and diagnosed at birth. When he was your son's age he was on keflex 4x a day, pancrease mt4s, actigall 3x a day, adeks twice a day, zantac twice a day. We did cpt for 15 minutes a day -- 3 times a day (6 am, 5:30 pm & 10 pm) with albuterol & atrovent nebulized. He cultured pseudo at 3 months, so he was on Tobi every other months.

Our CF clinic in the city is very proactive and prescribed the above regimine. Local clinic --- we were discouraged from using antibiotics, including tobi. Discouraged from using CPT and bronchiodialators.

 

[Ratatosk]

My son is also double df508 and diagnosed at birth. When he was your son's age he was on keflex 4x a day, pancrease mt4s, actigall 3x a day, adeks twice a day, zantac twice a day. We did cpt for 15 minutes a day -- 3 times a day (6 am, 5:30 pm & 10 pm) with albuterol & atrovent nebulized. He cultured pseudo at 3 months, so he was on Tobi every other months.

Our CF clinic in the city is very proactive and prescribed the above regimine. Local clinic --- we were discouraged from using antibiotics, including tobi. Discouraged from using CPT and bronchiodialators.

 

[Mommafirst]

My daughter is considered genetic CF, but not clinical CF at this
point as one of  her mutations tends to be consistent
with no pancreas involvement, and minimal lung involvement (this
conversation is then always followed with, "but we really
don't know what will happen in her case.")<br>
<br>
Right now we do CPT for 15 minutes 2x per day and she takes
prevacid once a day for reflux.  Otherwise, we truly are on
the "wait and see" approach.

 

[Mommafirst]

My daughter is considered genetic CF, but not clinical CF at this
point as one of  her mutations tends to be consistent
with no pancreas involvement, and minimal lung involvement (this
conversation is then always followed with, "but we really
don't know what will happen in her case.")<br>
<br>
Right now we do CPT for 15 minutes 2x per day and she takes
prevacid once a day for reflux.  Otherwise, we truly are on
the "wait and see" approach.

 

[Mommafirst]

My daughter is considered genetic CF, but not clinical CF at this
point as one of  her mutations tends to be consistent
with no pancreas involvement, and minimal lung involvement (this
conversation is then always followed with, "but we really
don't know what will happen in her case.")<br>
<br>
Right now we do CPT for 15 minutes 2x per day and she takes
prevacid once a day for reflux.  Otherwise, we truly are on
the "wait and see" approach.

 

[purplemartin]

Thanks guys, my main reason for asking this question is because I
WANT the proactive approach!<br>
<br>
He has already had pneumonia and a partial collapsed lung.  He
is also having the Nissan surgery in 3 weeks due to aspirating and
reflux (shich I know is not due to CF) and today he has started
coughing up blood and this past clinic visit he cultured staph
while on the last leg of antibiotics-which I was told antibiotics
killed (he always cultures staph though).  Also, the blood
test for his liver has repeatedly come back high and they just keep
having us redo the test.<br>
<br>
I don' t know, maybe they are doing what they see fit????  But
with treatments available that help with the symptoms/progression
of CF, why not use them???? <br>
<br>

 

[purplemartin]

Thanks guys, my main reason for asking this question is because I
WANT the proactive approach!<br>
<br>
He has already had pneumonia and a partial collapsed lung.  He
is also having the Nissan surgery in 3 weeks due to aspirating and
reflux (shich I know is not due to CF) and today he has started
coughing up blood and this past clinic visit he cultured staph
while on the last leg of antibiotics-which I was told antibiotics
killed (he always cultures staph though).  Also, the blood
test for his liver has repeatedly come back high and they just keep
having us redo the test.<br>
<br>
I don' t know, maybe they are doing what they see fit????  But
with treatments available that help with the symptoms/progression
of CF, why not use them???? <br>
<br>

 

[purplemartin]

Thanks guys, my main reason for asking this question is because I
WANT the proactive approach!<br>
<br>
He has already had pneumonia and a partial collapsed lung.  He
is also having the Nissan surgery in 3 weeks due to aspirating and
reflux (shich I know is not due to CF) and today he has started
coughing up blood and this past clinic visit he cultured staph
while on the last leg of antibiotics-which I was told antibiotics
killed (he always cultures staph though).  Also, the blood
test for his liver has repeatedly come back high and they just keep
having us redo the test.<br>
<br>
I don' t know, maybe they are doing what they see fit????  But
with treatments available that help with the symptoms/progression
of CF, why not use them???? <br>
<br>

 

[rcq925]

Hi there,

My daughter, Hayley, is now 32 months old and she is also a double Detla F508. Hayley was diagnosed at 3 months old. Her first sign was severe reflux and failure to gain weight, which they thought was just because of the reflux. We ended up in the hospital when she started aspirating into her lungs and stopped breathing. She had the Nissen Fundo at 3 months old and we thought that would solve everything, WRONG! We went home after the recovery from the Nissen, only to return to the hospital the next day because she was still having respiratory issues. THen they did the sweat test and we got the CF diagnosis, worst day of my life!!! When Hayley was an infant we did Xopenex by nebulizer three times per day (every 4 hours if sick), Pulmicort 2 times per day by nebulizer and manual CPT for 15 minutes 3 times per day. She got the vest when she was 18 months old and that is a lifesaver let me tell you!!

She currently does the about the same treatments, Xopenex 3 times per day, Pulmicort once per day (both of those are upped when ill) and she does her vest three times per day for 30 minutes each time. I think the key to CF is preventative treatment and keeping the lungs open and the mucouse moving with the CPT.

So feel free to ask me any other questions you might have about the Nissen or anything. Actually reflux is VERY COMMON in CFers and I know several CF kids that have had to have Nissens.

 

[rcq925]

Hi there,

My daughter, Hayley, is now 32 months old and she is also a double Detla F508. Hayley was diagnosed at 3 months old. Her first sign was severe reflux and failure to gain weight, which they thought was just because of the reflux. We ended up in the hospital when she started aspirating into her lungs and stopped breathing. She had the Nissen Fundo at 3 months old and we thought that would solve everything, WRONG! We went home after the recovery from the Nissen, only to return to the hospital the next day because she was still having respiratory issues. THen they did the sweat test and we got the CF diagnosis, worst day of my life!!! When Hayley was an infant we did Xopenex by nebulizer three times per day (every 4 hours if sick), Pulmicort 2 times per day by nebulizer and manual CPT for 15 minutes 3 times per day. She got the vest when she was 18 months old and that is a lifesaver let me tell you!!

She currently does the about the same treatments, Xopenex 3 times per day, Pulmicort once per day (both of those are upped when ill) and she does her vest three times per day for 30 minutes each time. I think the key to CF is preventative treatment and keeping the lungs open and the mucouse moving with the CPT.

So feel free to ask me any other questions you might have about the Nissen or anything. Actually reflux is VERY COMMON in CFers and I know several CF kids that have had to have Nissens.

 

[rcq925]

Hi there,

My daughter, Hayley, is now 32 months old and she is also a double Detla F508. Hayley was diagnosed at 3 months old. Her first sign was severe reflux and failure to gain weight, which they thought was just because of the reflux. We ended up in the hospital when she started aspirating into her lungs and stopped breathing. She had the Nissen Fundo at 3 months old and we thought that would solve everything, WRONG! We went home after the recovery from the Nissen, only to return to the hospital the next day because she was still having respiratory issues. THen they did the sweat test and we got the CF diagnosis, worst day of my life!!! When Hayley was an infant we did Xopenex by nebulizer three times per day (every 4 hours if sick), Pulmicort 2 times per day by nebulizer and manual CPT for 15 minutes 3 times per day. She got the vest when she was 18 months old and that is a lifesaver let me tell you!!

She currently does the about the same treatments, Xopenex 3 times per day, Pulmicort once per day (both of those are upped when ill) and she does her vest three times per day for 30 minutes each time. I think the key to CF is preventative treatment and keeping the lungs open and the mucouse moving with the CPT.

So feel free to ask me any other questions you might have about the Nissen or anything. Actually reflux is VERY COMMON in CFers and I know several CF kids that have had to have Nissens.

 

[izemmom]

Hi! My Emily will be 1 year old in a little less than 48 hours!!!!! Her daily regemin consists of : cpt 45 min 2x daily, more if needed; albuterol before cpt, flovent after; prevacid 2x/daily for reflux and just to help the enzyme work properly, she takes Pancrease mt4's and ABDEK's. At times we nebulize the albuterol, but only when she has a cold or really bad cough. We do Pulmozyme every other day.
SHe cultured psuedo at 1 1/2 months and did TOBI 28on/28off until two months ago when she had her third consecutive "clean" culture. When we all get the "Family cold thing" she is the first to get healthy again. Her chest x-ray last month showed "marked improvement" over the previous films and her infant PFT's were excellent. She has had recurrent ear infecdtions like her big sister, so we have done a few courses of an oral antibiotic, but will be getting tubes soon to hopefully alleviate that. I am all for the proactive stance. Our pulmononogist told us stratight out that she was aggressive and proactive. We seem to be getting agood results so far, altough I am fully aware that it's early in the game. Good luck!

 

[izemmom]

Hi! My Emily will be 1 year old in a little less than 48 hours!!!!! Her daily regemin consists of : cpt 45 min 2x daily, more if needed; albuterol before cpt, flovent after; prevacid 2x/daily for reflux and just to help the enzyme work properly, she takes Pancrease mt4's and ABDEK's. At times we nebulize the albuterol, but only when she has a cold or really bad cough. We do Pulmozyme every other day.
SHe cultured psuedo at 1 1/2 months and did TOBI 28on/28off until two months ago when she had her third consecutive "clean" culture. When we all get the "Family cold thing" she is the first to get healthy again. Her chest x-ray last month showed "marked improvement" over the previous films and her infant PFT's were excellent. She has had recurrent ear infecdtions like her big sister, so we have done a few courses of an oral antibiotic, but will be getting tubes soon to hopefully alleviate that. I am all for the proactive stance. Our pulmononogist told us stratight out that she was aggressive and proactive. We seem to be getting agood results so far, altough I am fully aware that it's early in the game. Good luck!

 

[izemmom]

Hi! My Emily will be 1 year old in a little less than 48 hours!!!!! Her daily regemin consists of : cpt 45 min 2x daily, more if needed; albuterol before cpt, flovent after; prevacid 2x/daily for reflux and just to help the enzyme work properly, she takes Pancrease mt4's and ABDEK's. At times we nebulize the albuterol, but only when she has a cold or really bad cough. We do Pulmozyme every other day.
SHe cultured psuedo at 1 1/2 months and did TOBI 28on/28off until two months ago when she had her third consecutive "clean" culture. When we all get the "Family cold thing" she is the first to get healthy again. Her chest x-ray last month showed "marked improvement" over the previous films and her infant PFT's were excellent. She has had recurrent ear infecdtions like her big sister, so we have done a few courses of an oral antibiotic, but will be getting tubes soon to hopefully alleviate that. I am all for the proactive stance. Our pulmononogist told us stratight out that she was aggressive and proactive. We seem to be getting agood results so far, altough I am fully aware that it's early in the game. Good luck!