She's in the Hospital

M

Mommy2Alysa

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

How terrible for all of you. I hope Alysa starts to feel better soon. I had to smile at the "nerrrds....I'm beeping." How cute is that?



If there is anything I can do to help you out, let me know. I live in London, not too far from Children's, and know what it is like. I can bring you a coffee, book, dinner, whatever.



I am praying for your family.



Sharon.</end quote></div>

Aww thanks so much. I wish I had seen this sooner but she is getting out soon but thanks so much!
 
M

Mommy2Alysa

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

How terrible for all of you. I hope Alysa starts to feel better soon. I had to smile at the "nerrrds....I'm beeping." How cute is that?



If there is anything I can do to help you out, let me know. I live in London, not too far from Children's, and know what it is like. I can bring you a coffee, book, dinner, whatever.



I am praying for your family.



Sharon.</end quote></div>

Aww thanks so much. I wish I had seen this sooner but she is getting out soon but thanks so much!
 
M

Mommy2Alysa

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

How terrible for all of you. I hope Alysa starts to feel better soon. I had to smile at the "nerrrds....I'm beeping." How cute is that?



If there is anything I can do to help you out, let me know. I live in London, not too far from Children's, and know what it is like. I can bring you a coffee, book, dinner, whatever.



I am praying for your family.



Sharon.</end quote></div>

Aww thanks so much. I wish I had seen this sooner but she is getting out soon but thanks so much!
 
M

Mommy2Alysa

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

How terrible for all of you. I hope Alysa starts to feel better soon. I had to smile at the "nerrrds....I'm beeping." How cute is that?



If there is anything I can do to help you out, let me know. I live in London, not too far from Children's, and know what it is like. I can bring you a coffee, book, dinner, whatever.



I am praying for your family.



Sharon.</end quote>

Aww thanks so much. I wish I had seen this sooner but she is getting out soon but thanks so much!
 
M

Mommy2Alysa

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sslondon</b></i>
<br />
<br />How terrible for all of you. I hope Alysa starts to feel better soon. I had to smile at the "nerrrds....I'm beeping." How cute is that?
<br />
<br />
<br />
<br />If there is anything I can do to help you out, let me know. I live in London, not too far from Children's, and know what it is like. I can bring you a coffee, book, dinner, whatever.
<br />
<br />
<br />
<br />I am praying for your family.
<br />
<br />
<br />
<br />Sharon.</end quote>
<br />
<br />Aww thanks so much. I wish I had seen this sooner but she is getting out soon but thanks so much!
<br />
<br />
 
M

Mommy2Alysa

New member
They are talking about putting her on TOBI (I thought she was on this before but it was tobramycin - didnt realize they were different) and pulmozyme.

Is there anything I should be prepared for? I think we are doing one month of TOBI and years and years of Pulmozyme. I was checking out the adult forum and they all said (well most) that TOBI makes them tired and stuff....

What are your experiences?
 
M

Mommy2Alysa

New member
They are talking about putting her on TOBI (I thought she was on this before but it was tobramycin - didnt realize they were different) and pulmozyme.

Is there anything I should be prepared for? I think we are doing one month of TOBI and years and years of Pulmozyme. I was checking out the adult forum and they all said (well most) that TOBI makes them tired and stuff....

What are your experiences?
 
M

Mommy2Alysa

New member
They are talking about putting her on TOBI (I thought she was on this before but it was tobramycin - didnt realize they were different) and pulmozyme.

Is there anything I should be prepared for? I think we are doing one month of TOBI and years and years of Pulmozyme. I was checking out the adult forum and they all said (well most) that TOBI makes them tired and stuff....

What are your experiences?
 
M

Mommy2Alysa

New member
They are talking about putting her on TOBI (I thought she was on this before but it was tobramycin - didnt realize they were different) and pulmozyme.

Is there anything I should be prepared for? I think we are doing one month of TOBI and years and years of Pulmozyme. I was checking out the adult forum and they all said (well most) that TOBI makes them tired and stuff....

What are your experiences?
 
M

Mommy2Alysa

New member
They are talking about putting her on TOBI (I thought she was on this before but it was tobramycin - didnt realize they were different) and pulmozyme.
<br />
<br />Is there anything I should be prepared for? I think we are doing one month of TOBI and years and years of Pulmozyme. I was checking out the adult forum and they all said (well most) that TOBI makes them tired and stuff....
<br />
<br />What are your experiences?
 
R

Ratatosk

Administrator
Staff member
DS has been on it since he was about 3 months old. Twice a day, every other month. Really hasn't had issues. Sometimes a stuffier nose, scratchy sounding voice...

I was concerned when he first got put on it because of the package insert warnings. Plus we had a faulty pari compressor and treatments took about 45-50 minutes. New compressor = about 25 minutes. Morning treatment isn't too bad, 'cuz he pretty much sleeps thru it, but the after work/school one -- gets a little hectic. Sometimes feel as if there aren't enough hours in the day to get things done. On the plus side -- feels like a VACATION the month he's off it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
DS has been on it since he was about 3 months old. Twice a day, every other month. Really hasn't had issues. Sometimes a stuffier nose, scratchy sounding voice...

I was concerned when he first got put on it because of the package insert warnings. Plus we had a faulty pari compressor and treatments took about 45-50 minutes. New compressor = about 25 minutes. Morning treatment isn't too bad, 'cuz he pretty much sleeps thru it, but the after work/school one -- gets a little hectic. Sometimes feel as if there aren't enough hours in the day to get things done. On the plus side -- feels like a VACATION the month he's off it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
DS has been on it since he was about 3 months old. Twice a day, every other month. Really hasn't had issues. Sometimes a stuffier nose, scratchy sounding voice...

I was concerned when he first got put on it because of the package insert warnings. Plus we had a faulty pari compressor and treatments took about 45-50 minutes. New compressor = about 25 minutes. Morning treatment isn't too bad, 'cuz he pretty much sleeps thru it, but the after work/school one -- gets a little hectic. Sometimes feel as if there aren't enough hours in the day to get things done. On the plus side -- feels like a VACATION the month he's off it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
DS has been on it since he was about 3 months old. Twice a day, every other month. Really hasn't had issues. Sometimes a stuffier nose, scratchy sounding voice...

I was concerned when he first got put on it because of the package insert warnings. Plus we had a faulty pari compressor and treatments took about 45-50 minutes. New compressor = about 25 minutes. Morning treatment isn't too bad, 'cuz he pretty much sleeps thru it, but the after work/school one -- gets a little hectic. Sometimes feel as if there aren't enough hours in the day to get things done. On the plus side -- feels like a VACATION the month he's off it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
DS has been on it since he was about 3 months old. Twice a day, every other month. Really hasn't had issues. Sometimes a stuffier nose, scratchy sounding voice...
<br />
<br />I was concerned when he first got put on it because of the package insert warnings. Plus we had a faulty pari compressor and treatments took about 45-50 minutes. New compressor = about 25 minutes. Morning treatment isn't too bad, 'cuz he pretty much sleeps thru it, but the after work/school one -- gets a little hectic. Sometimes feel as if there aren't enough hours in the day to get things done. On the plus side -- feels like a VACATION the month he's off it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

shimmereestar

New member
My Ellie does pulmozyne twice a day. We usually do it for her early morning treatment when she's still asleep, and her last treatment at night. We do it after all her other inhaled nebs. It does make her sleepy, but since we do it around the time she sleeps anyway she doesn't fight it. This is the only side effect I've noticed. We have been using it pretty much since diagnosis as preventative maintenece. I hope this helps a little. She's not been on TOBI so I'm not sure about that<img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm praying for ya'll
 
S

shimmereestar

New member
My Ellie does pulmozyne twice a day. We usually do it for her early morning treatment when she's still asleep, and her last treatment at night. We do it after all her other inhaled nebs. It does make her sleepy, but since we do it around the time she sleeps anyway she doesn't fight it. This is the only side effect I've noticed. We have been using it pretty much since diagnosis as preventative maintenece. I hope this helps a little. She's not been on TOBI so I'm not sure about that<img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm praying for ya'll
 
S

shimmereestar

New member
My Ellie does pulmozyne twice a day. We usually do it for her early morning treatment when she's still asleep, and her last treatment at night. We do it after all her other inhaled nebs. It does make her sleepy, but since we do it around the time she sleeps anyway she doesn't fight it. This is the only side effect I've noticed. We have been using it pretty much since diagnosis as preventative maintenece. I hope this helps a little. She's not been on TOBI so I'm not sure about that<img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm praying for ya'll
 
S

shimmereestar

New member
My Ellie does pulmozyne twice a day. We usually do it for her early morning treatment when she's still asleep, and her last treatment at night. We do it after all her other inhaled nebs. It does make her sleepy, but since we do it around the time she sleeps anyway she doesn't fight it. This is the only side effect I've noticed. We have been using it pretty much since diagnosis as preventative maintenece. I hope this helps a little. She's not been on TOBI so I'm not sure about that<img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm praying for ya'll
 
S

shimmereestar

New member
My Ellie does pulmozyne twice a day. We usually do it for her early morning treatment when she's still asleep, and her last treatment at night. We do it after all her other inhaled nebs. It does make her sleepy, but since we do it around the time she sleeps anyway she doesn't fight it. This is the only side effect I've noticed. We have been using it pretty much since diagnosis as preventative maintenece. I hope this helps a little. She's not been on TOBI so I'm not sure about that<img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm praying for ya'll
 
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