Everything is New to Me

[bkc3]

My wife and I joined last year when our son was diagnosed, he was 3 and in rough shape. He was hospitalized for a few weeks and fortunately recovered very well. He has been doing very well now that he is on enzymes (creon 6) and the normal preventative inhaled meds and chest PT via the vest. He Cultured PA last year, but his cultures have been clear for a few months. The TOBI seems to be keeping it at bay.
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<br />We have never tried a sea salt bath, but the Hypertonic Saline has been a huge help. I am a little apprehensive about aerosolize what's in the city water supply.
<br />As for sterilizers...we use the AVENT IQ24. It seems to be a good unit.
<br />With Gavin so young, it will probably be tough, but try to pack in the calories where you can.
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<br />I am not an expert with regard to this monster(CF), but those are some of our experiences.
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[ambrozhe]

Thanks for the info. I am so new to this and have been very overwhelmed. I am trying to do the best for my son because he has had so many problems. He was born 9lbs 8oz and dropped within a week to 8lbs 10oz and then stayed there until we were able to diagnose him and get him on enzymes. He went from 95th percentile to 25th percentile and has remained at 25th percentile. I am giving him extra calories by putting formula in my breastmilk. He still only gains 3 oz per week and has orange greasy stools with the max dose of enzymes. I am reading on here about using acid reflux meds with the enzymes to increase the effectiveness. I called to the CF clinic and they said that it would be the next step and to call Monday again to talk about it.

 

[ambrozhe]

Thanks for the info. I am so new to this and have been very overwhelmed. I am trying to do the best for my son because he has had so many problems. He was born 9lbs 8oz and dropped within a week to 8lbs 10oz and then stayed there until we were able to diagnose him and get him on enzymes. He went from 95th percentile to 25th percentile and has remained at 25th percentile. I am giving him extra calories by putting formula in my breastmilk. He still only gains 3 oz per week and has orange greasy stools with the max dose of enzymes. I am reading on here about using acid reflux meds with the enzymes to increase the effectiveness. I called to the CF clinic and they said that it would be the next step and to call Monday again to talk about it.

 

[ambrozhe]

Thanks for the info. I am so new to this and have been very overwhelmed. I am trying to do the best for my son because he has had so many problems. He was born 9lbs 8oz and dropped within a week to 8lbs 10oz and then stayed there until we were able to diagnose him and get him on enzymes. He went from 95th percentile to 25th percentile and has remained at 25th percentile. I am giving him extra calories by putting formula in my breastmilk. He still only gains 3 oz per week and has orange greasy stools with the max dose of enzymes. I am reading on here about using acid reflux meds with the enzymes to increase the effectiveness. I called to the CF clinic and they said that it would be the next step and to call Monday again to talk about it.

 

[ehtansky21]

I would also see what the clinic says about probiotics. That fixed some of the digestive issues for my boys. I started giving it in powder form when they were very young.

blessings,
missa

 

[ehtansky21]

I would also see what the clinic says about probiotics. That fixed some of the digestive issues for my boys. I started giving it in powder form when they were very young.

blessings,
missa

 

[ehtansky21]

I would also see what the clinic says about probiotics. That fixed some of the digestive issues for my boys. I started giving it in powder form when they were very young.
<br />
<br />blessings,
<br />missa