Many questions--1 post

S

sdelorenzo

Guest
Both of my children have been admitted three times for IV's. It is very challenging, but the IV's more often than not solve the problems our kids are having with their lungs. You should expect your daughter to stop coughing and her lung function to significantly improve. So while a hospital stay is not what you want for anyone, it does end up helping your daughter get over her coughing and get back to her baseline. One thing you could really push for is home IV's after she goes in for a few days. It makes a world of difference to be home. Also make sure she get the IV balls. It is almost like they are not on IV's because they can run around as usual and go out during the IV's and no one knows. There is a chance though since she had crackling that they would want her to stay in the hospital until they can see she is getting better. I was told my daughter had the thickening you were referring to.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf
 
S

sdelorenzo

Guest
Both of my children have been admitted three times for IV's. It is very challenging, but the IV's more often than not solve the problems our kids are having with their lungs. You should expect your daughter to stop coughing and her lung function to significantly improve. So while a hospital stay is not what you want for anyone, it does end up helping your daughter get over her coughing and get back to her baseline. One thing you could really push for is home IV's after she goes in for a few days. It makes a world of difference to be home. Also make sure she get the IV balls. It is almost like they are not on IV's because they can run around as usual and go out during the IV's and no one knows. There is a chance though since she had crackling that they would want her to stay in the hospital until they can see she is getting better. I was told my daughter had the thickening you were referring to.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf
 
S

sdelorenzo

Guest
Both of my children have been admitted three times for IV's. It is very challenging, but the IV's more often than not solve the problems our kids are having with their lungs. You should expect your daughter to stop coughing and her lung function to significantly improve. So while a hospital stay is not what you want for anyone, it does end up helping your daughter get over her coughing and get back to her baseline. One thing you could really push for is home IV's after she goes in for a few days. It makes a world of difference to be home. Also make sure she get the IV balls. It is almost like they are not on IV's because they can run around as usual and go out during the IV's and no one knows. There is a chance though since she had crackling that they would want her to stay in the hospital until they can see she is getting better. I was told my daughter had the thickening you were referring to.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf
 
S

sdelorenzo

Guest
Both of my children have been admitted three times for IV's. It is very challenging, but the IV's more often than not solve the problems our kids are having with their lungs. You should expect your daughter to stop coughing and her lung function to significantly improve. So while a hospital stay is not what you want for anyone, it does end up helping your daughter get over her coughing and get back to her baseline. One thing you could really push for is home IV's after she goes in for a few days. It makes a world of difference to be home. Also make sure she get the IV balls. It is almost like they are not on IV's because they can run around as usual and go out during the IV's and no one knows. There is a chance though since she had crackling that they would want her to stay in the hospital until they can see she is getting better. I was told my daughter had the thickening you were referring to.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf
 
S

sdelorenzo

Guest
Both of my children have been admitted three times for IV's. It is very challenging, but the IV's more often than not solve the problems our kids are having with their lungs. You should expect your daughter to stop coughing and her lung function to significantly improve. So while a hospital stay is not what you want for anyone, it does end up helping your daughter get over her coughing and get back to her baseline. One thing you could really push for is home IV's after she goes in for a few days. It makes a world of difference to be home. Also make sure she get the IV balls. It is almost like they are not on IV's because they can run around as usual and go out during the IV's and no one knows. There is a chance though since she had crackling that they would want her to stay in the hospital until they can see she is getting better. I was told my daughter had the thickening you were referring to.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf
 
M

Mommafirst

Guest
I don't know what to say about the peribronchial thickening. I recall Alyssa had one scan that showed that, and I too was concerned that our doctors weren't concerned and just said it was "normal for a kid with CF".

I can help with preparing for the hospital stay. Alyssa has been in for IVs three times (ages 14 months, 2.5, and 3.5). The first time was horrible because I didn't know what to expect and there was the emotion of it being the start of a long life of these admits.

If you know an admit is coming, start mentally preparing a list of what you will need. You can probably search in the forums to find lists that have been made in the past of thing people bring.

The best advice I can give you is that even though its hard to have the admit, it is sooo important to be proactive and agressive. Lung infections that go untreated can casue irreversible damage -- so the time in the hospital now cna buy her years of health on the other end. ((((HUGS))))
 
M

Mommafirst

Guest
I don't know what to say about the peribronchial thickening. I recall Alyssa had one scan that showed that, and I too was concerned that our doctors weren't concerned and just said it was "normal for a kid with CF".

I can help with preparing for the hospital stay. Alyssa has been in for IVs three times (ages 14 months, 2.5, and 3.5). The first time was horrible because I didn't know what to expect and there was the emotion of it being the start of a long life of these admits.

If you know an admit is coming, start mentally preparing a list of what you will need. You can probably search in the forums to find lists that have been made in the past of thing people bring.

The best advice I can give you is that even though its hard to have the admit, it is sooo important to be proactive and agressive. Lung infections that go untreated can casue irreversible damage -- so the time in the hospital now cna buy her years of health on the other end. ((((HUGS))))
 
M

Mommafirst

Guest
I don't know what to say about the peribronchial thickening. I recall Alyssa had one scan that showed that, and I too was concerned that our doctors weren't concerned and just said it was "normal for a kid with CF".

I can help with preparing for the hospital stay. Alyssa has been in for IVs three times (ages 14 months, 2.5, and 3.5). The first time was horrible because I didn't know what to expect and there was the emotion of it being the start of a long life of these admits.

If you know an admit is coming, start mentally preparing a list of what you will need. You can probably search in the forums to find lists that have been made in the past of thing people bring.

The best advice I can give you is that even though its hard to have the admit, it is sooo important to be proactive and agressive. Lung infections that go untreated can casue irreversible damage -- so the time in the hospital now cna buy her years of health on the other end. ((((HUGS))))
 
M

Mommafirst

Guest
I don't know what to say about the peribronchial thickening. I recall Alyssa had one scan that showed that, and I too was concerned that our doctors weren't concerned and just said it was "normal for a kid with CF".

I can help with preparing for the hospital stay. Alyssa has been in for IVs three times (ages 14 months, 2.5, and 3.5). The first time was horrible because I didn't know what to expect and there was the emotion of it being the start of a long life of these admits.

If you know an admit is coming, start mentally preparing a list of what you will need. You can probably search in the forums to find lists that have been made in the past of thing people bring.

The best advice I can give you is that even though its hard to have the admit, it is sooo important to be proactive and agressive. Lung infections that go untreated can casue irreversible damage -- so the time in the hospital now cna buy her years of health on the other end. ((((HUGS))))
 
M

Mommafirst

Guest
I don't know what to say about the peribronchial thickening. I recall Alyssa had one scan that showed that, and I too was concerned that our doctors weren't concerned and just said it was "normal for a kid with CF".
<br />
<br />I can help with preparing for the hospital stay. Alyssa has been in for IVs three times (ages 14 months, 2.5, and 3.5). The first time was horrible because I didn't know what to expect and there was the emotion of it being the start of a long life of these admits.
<br />
<br />If you know an admit is coming, start mentally preparing a list of what you will need. You can probably search in the forums to find lists that have been made in the past of thing people bring.
<br />
<br />The best advice I can give you is that even though its hard to have the admit, it is sooo important to be proactive and agressive. Lung infections that go untreated can casue irreversible damage -- so the time in the hospital now cna buy her years of health on the other end. ((((HUGS))))
 
Y

ymikhale

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.



Ymikhale - what environmental changes did you make and which meds is your daughter taking?</end quote></div>

Here are major changes that I made:

1/ got rid of carpet in the living room and curtains in the bedroom.
2/switched to vinigear for cleaning
3/got rid of all sponges and replaced them with copper scrubbs
4/bought hepa filter and heppa vaccum cleaner
5/bought a towel drier for the bath
6/bought UV tooth brush sterilizer
7/switched to fragnance free products for the whole family.

I should also add that my dd has a very healthy and mostly organic food diet with no sugar, snacks etc.

In terms of meds she does not have much, she only had TOBI for PA in June (3 cycles)and very often Bactrim (for staph overgrowth during colds). on the regular basis she only has vitamins and Mopral. I do give her a probiotic (started in the summer), coconut oil, flaxseed oil and sea salt.
 
Y

ymikhale

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.



Ymikhale - what environmental changes did you make and which meds is your daughter taking?</end quote></div>

Here are major changes that I made:

1/ got rid of carpet in the living room and curtains in the bedroom.
2/switched to vinigear for cleaning
3/got rid of all sponges and replaced them with copper scrubbs
4/bought hepa filter and heppa vaccum cleaner
5/bought a towel drier for the bath
6/bought UV tooth brush sterilizer
7/switched to fragnance free products for the whole family.

I should also add that my dd has a very healthy and mostly organic food diet with no sugar, snacks etc.

In terms of meds she does not have much, she only had TOBI for PA in June (3 cycles)and very often Bactrim (for staph overgrowth during colds). on the regular basis she only has vitamins and Mopral. I do give her a probiotic (started in the summer), coconut oil, flaxseed oil and sea salt.
 
Y

ymikhale

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.



Ymikhale - what environmental changes did you make and which meds is your daughter taking?</end quote></div>

Here are major changes that I made:

1/ got rid of carpet in the living room and curtains in the bedroom.
2/switched to vinigear for cleaning
3/got rid of all sponges and replaced them with copper scrubbs
4/bought hepa filter and heppa vaccum cleaner
5/bought a towel drier for the bath
6/bought UV tooth brush sterilizer
7/switched to fragnance free products for the whole family.

I should also add that my dd has a very healthy and mostly organic food diet with no sugar, snacks etc.

In terms of meds she does not have much, she only had TOBI for PA in June (3 cycles)and very often Bactrim (for staph overgrowth during colds). on the regular basis she only has vitamins and Mopral. I do give her a probiotic (started in the summer), coconut oil, flaxseed oil and sea salt.
 
Y

ymikhale

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.



Ymikhale - what environmental changes did you make and which meds is your daughter taking?</end quote>

Here are major changes that I made:

1/ got rid of carpet in the living room and curtains in the bedroom.
2/switched to vinigear for cleaning
3/got rid of all sponges and replaced them with copper scrubbs
4/bought hepa filter and heppa vaccum cleaner
5/bought a towel drier for the bath
6/bought UV tooth brush sterilizer
7/switched to fragnance free products for the whole family.

I should also add that my dd has a very healthy and mostly organic food diet with no sugar, snacks etc.

In terms of meds she does not have much, she only had TOBI for PA in June (3 cycles)and very often Bactrim (for staph overgrowth during colds). on the regular basis she only has vitamins and Mopral. I do give her a probiotic (started in the summer), coconut oil, flaxseed oil and sea salt.
 
Y

ymikhale

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>
<br />
<br />My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.
<br />
<br />
<br />
<br />Ymikhale - what environmental changes did you make and which meds is your daughter taking?</end quote>
<br />
<br />Here are major changes that I made:
<br />
<br />1/ got rid of carpet in the living room and curtains in the bedroom.
<br />2/switched to vinigear for cleaning
<br />3/got rid of all sponges and replaced them with copper scrubbs
<br />4/bought hepa filter and heppa vaccum cleaner
<br />5/bought a towel drier for the bath
<br />6/bought UV tooth brush sterilizer
<br />7/switched to fragnance free products for the whole family.
<br />
<br />I should also add that my dd has a very healthy and mostly organic food diet with no sugar, snacks etc.
<br />
<br />In terms of meds she does not have much, she only had TOBI for PA in June (3 cycles)and very often Bactrim (for staph overgrowth during colds). on the regular basis she only has vitamins and Mopral. I do give her a probiotic (started in the summer), coconut oil, flaxseed oil and sea salt.
<br />
 
C

crickit715

New member
about environmental changes: it doesnt matter how small your place is..we live in a VERY small apt and have 2 hepa air purifiers that i run 24/7. i think this has helped alot! like the previous post i also use vinegar and water to do daily cleaning and use alot of lysol wipes (clorox wipes are very strong smelling). we use no fragrances of any kind, no candles, perfumes, air fresheners etc... i cant get rid of my carpet, but i make sure my daughter isnt in the room when i do vaccum...because it stirs up any dust that is around. i have clean my shower head after each use and use tons of soap and hand sanitizer. and the big one is WE NEVER WEAR SHOES IN OUR APT!! they bring in so many outside germs! ....even with all of these precautions my daughter has also battled staph since june, it has caused inflammation but no bronchial wall thickening. i admit i may be a little bit ocd..(lol), but i think every little bit helps! (cant hurt!!) good luck!!
 
C

crickit715

New member
about environmental changes: it doesnt matter how small your place is..we live in a VERY small apt and have 2 hepa air purifiers that i run 24/7. i think this has helped alot! like the previous post i also use vinegar and water to do daily cleaning and use alot of lysol wipes (clorox wipes are very strong smelling). we use no fragrances of any kind, no candles, perfumes, air fresheners etc... i cant get rid of my carpet, but i make sure my daughter isnt in the room when i do vaccum...because it stirs up any dust that is around. i have clean my shower head after each use and use tons of soap and hand sanitizer. and the big one is WE NEVER WEAR SHOES IN OUR APT!! they bring in so many outside germs! ....even with all of these precautions my daughter has also battled staph since june, it has caused inflammation but no bronchial wall thickening. i admit i may be a little bit ocd..(lol), but i think every little bit helps! (cant hurt!!) good luck!!
 
C

crickit715

New member
about environmental changes: it doesnt matter how small your place is..we live in a VERY small apt and have 2 hepa air purifiers that i run 24/7. i think this has helped alot! like the previous post i also use vinegar and water to do daily cleaning and use alot of lysol wipes (clorox wipes are very strong smelling). we use no fragrances of any kind, no candles, perfumes, air fresheners etc... i cant get rid of my carpet, but i make sure my daughter isnt in the room when i do vaccum...because it stirs up any dust that is around. i have clean my shower head after each use and use tons of soap and hand sanitizer. and the big one is WE NEVER WEAR SHOES IN OUR APT!! they bring in so many outside germs! ....even with all of these precautions my daughter has also battled staph since june, it has caused inflammation but no bronchial wall thickening. i admit i may be a little bit ocd..(lol), but i think every little bit helps! (cant hurt!!) good luck!!
 
C

crickit715

New member
about environmental changes: it doesnt matter how small your place is..we live in a VERY small apt and have 2 hepa air purifiers that i run 24/7. i think this has helped alot! like the previous post i also use vinegar and water to do daily cleaning and use alot of lysol wipes (clorox wipes are very strong smelling). we use no fragrances of any kind, no candles, perfumes, air fresheners etc... i cant get rid of my carpet, but i make sure my daughter isnt in the room when i do vaccum...because it stirs up any dust that is around. i have clean my shower head after each use and use tons of soap and hand sanitizer. and the big one is WE NEVER WEAR SHOES IN OUR APT!! they bring in so many outside germs! ....even with all of these precautions my daughter has also battled staph since june, it has caused inflammation but no bronchial wall thickening. i admit i may be a little bit ocd..(lol), but i think every little bit helps! (cant hurt!!) good luck!!
 
C

crickit715

New member
about environmental changes: it doesnt matter how small your place is..we live in a VERY small apt and have 2 hepa air purifiers that i run 24/7. i think this has helped alot! like the previous post i also use vinegar and water to do daily cleaning and use alot of lysol wipes (clorox wipes are very strong smelling). we use no fragrances of any kind, no candles, perfumes, air fresheners etc... i cant get rid of my carpet, but i make sure my daughter isnt in the room when i do vaccum...because it stirs up any dust that is around. i have clean my shower head after each use and use tons of soap and hand sanitizer. and the big one is WE NEVER WEAR SHOES IN OUR APT!! they bring in so many outside germs! ....even with all of these precautions my daughter has also battled staph since june, it has caused inflammation but no bronchial wall thickening. i admit i may be a little bit ocd..(lol), but i think every little bit helps! (cant hurt!!) good luck!!
 
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