my two year old doesn't want to nebulize and very very hoarse voice

C

chevbacher

New member
ok..here are 2 questions for this wonderful team who i dont know at all but feel a part of...firstly, my 2 year old, Tehilla with CF has a very very hoarse deep throaty voice. it's been this way since we started nebs. and IV antibiotics but i think it's getting worse. should i worry? is there anything else it could be from?
next, there are days when it takes such HUGE effort and energy to get her to nebulize. she doesn't want to, she wants to play etc..up until now videos usually work during nebs time. i've also tried books, games, dominoes, and my big kids goofing around making shows for her etc..any other ideas?? sometimes I feel like pulling my hair our. she is so delicious but also very strong-willed...sometimes i feel like i am choking with anxiety when she wont do what she needs to keep healthy,like eating! any ideas???
love,
chev
 
C

chevbacher

New member
ok..here are 2 questions for this wonderful team who i dont know at all but feel a part of...firstly, my 2 year old, Tehilla with CF has a very very hoarse deep throaty voice. it's been this way since we started nebs. and IV antibiotics but i think it's getting worse. should i worry? is there anything else it could be from?
next, there are days when it takes such HUGE effort and energy to get her to nebulize. she doesn't want to, she wants to play etc..up until now videos usually work during nebs time. i've also tried books, games, dominoes, and my big kids goofing around making shows for her etc..any other ideas?? sometimes I feel like pulling my hair our. she is so delicious but also very strong-willed...sometimes i feel like i am choking with anxiety when she wont do what she needs to keep healthy,like eating! any ideas???
love,
chev
 
C

chevbacher

New member
ok..here are 2 questions for this wonderful team who i dont know at all but feel a part of...firstly, my 2 year old, Tehilla with CF has a very very hoarse deep throaty voice. it's been this way since we started nebs. and IV antibiotics but i think it's getting worse. should i worry? is there anything else it could be from?
next, there are days when it takes such HUGE effort and energy to get her to nebulize. she doesn't want to, she wants to play etc..up until now videos usually work during nebs time. i've also tried books, games, dominoes, and my big kids goofing around making shows for her etc..any other ideas?? sometimes I feel like pulling my hair our. she is so delicious but also very strong-willed...sometimes i feel like i am choking with anxiety when she wont do what she needs to keep healthy,like eating! any ideas???
love,
chev
 
C

chevbacher

New member
ok..here are 2 questions for this wonderful team who i dont know at all but feel a part of...firstly, my 2 year old, Tehilla with CF has a very very hoarse deep throaty voice. it's been this way since we started nebs. and IV antibiotics but i think it's getting worse. should i worry? is there anything else it could be from?
next, there are days when it takes such HUGE effort and energy to get her to nebulize. she doesn't want to, she wants to play etc..up until now videos usually work during nebs time. i've also tried books, games, dominoes, and my big kids goofing around making shows for her etc..any other ideas?? sometimes I feel like pulling my hair our. she is so delicious but also very strong-willed...sometimes i feel like i am choking with anxiety when she wont do what she needs to keep healthy,like eating! any ideas???
love,
chev
 
C

chevbacher

New member
ok..here are 2 questions for this wonderful team who i dont know at all but feel a part of...firstly, my 2 year old, Tehilla with CF has a very very hoarse deep throaty voice. it's been this way since we started nebs. and IV antibiotics but i think it's getting worse. should i worry? is there anything else it could be from?
<br />next, there are days when it takes such HUGE effort and energy to get her to nebulize. she doesn't want to, she wants to play etc..up until now videos usually work during nebs time. i've also tried books, games, dominoes, and my big kids goofing around making shows for her etc..any other ideas?? sometimes I feel like pulling my hair our. she is so delicious but also very strong-willed...sometimes i feel like i am choking with anxiety when she wont do what she needs to keep healthy,like eating! any ideas???
<br />love,
<br />chev
<br />
 
M

Mommafirst

Guest
I'm so sorry that your post got missed.

I'm pretty sure that a lot of the nebs may cause a raspy type voice. Overall, CFers tend to have that sound, though not necessarily at two years old. I'd definitely ask your center.

As far as not wanting to neb -- its DEFINITELY the age. 2 is soooo hard to get them to do treatments. My daughter is getting better now, but she's already 4. I know its impossible to see, but it will get easier. In the meantime, find something she likes to do that you can save JUST for treatment time. Maybe you can buy stickers and cover the compressor with a new sticker for each completed treatment -- or even have a sticker chart. We did that for potty training and it worked well.

Hang in there.

Maybe someone else has some better suggestiosn.
 
M

Mommafirst

Guest
I'm so sorry that your post got missed.

I'm pretty sure that a lot of the nebs may cause a raspy type voice. Overall, CFers tend to have that sound, though not necessarily at two years old. I'd definitely ask your center.

As far as not wanting to neb -- its DEFINITELY the age. 2 is soooo hard to get them to do treatments. My daughter is getting better now, but she's already 4. I know its impossible to see, but it will get easier. In the meantime, find something she likes to do that you can save JUST for treatment time. Maybe you can buy stickers and cover the compressor with a new sticker for each completed treatment -- or even have a sticker chart. We did that for potty training and it worked well.

Hang in there.

Maybe someone else has some better suggestiosn.
 
M

Mommafirst

Guest
I'm so sorry that your post got missed.

I'm pretty sure that a lot of the nebs may cause a raspy type voice. Overall, CFers tend to have that sound, though not necessarily at two years old. I'd definitely ask your center.

As far as not wanting to neb -- its DEFINITELY the age. 2 is soooo hard to get them to do treatments. My daughter is getting better now, but she's already 4. I know its impossible to see, but it will get easier. In the meantime, find something she likes to do that you can save JUST for treatment time. Maybe you can buy stickers and cover the compressor with a new sticker for each completed treatment -- or even have a sticker chart. We did that for potty training and it worked well.

Hang in there.

Maybe someone else has some better suggestiosn.
 
M

Mommafirst

Guest
I'm so sorry that your post got missed.

I'm pretty sure that a lot of the nebs may cause a raspy type voice. Overall, CFers tend to have that sound, though not necessarily at two years old. I'd definitely ask your center.

As far as not wanting to neb -- its DEFINITELY the age. 2 is soooo hard to get them to do treatments. My daughter is getting better now, but she's already 4. I know its impossible to see, but it will get easier. In the meantime, find something she likes to do that you can save JUST for treatment time. Maybe you can buy stickers and cover the compressor with a new sticker for each completed treatment -- or even have a sticker chart. We did that for potty training and it worked well.

Hang in there.

Maybe someone else has some better suggestiosn.
 
M

Mommafirst

Guest
I'm so sorry that your post got missed.
<br />
<br />I'm pretty sure that a lot of the nebs may cause a raspy type voice. Overall, CFers tend to have that sound, though not necessarily at two years old. I'd definitely ask your center.
<br />
<br />As far as not wanting to neb -- its DEFINITELY the age. 2 is soooo hard to get them to do treatments. My daughter is getting better now, but she's already 4. I know its impossible to see, but it will get easier. In the meantime, find something she likes to do that you can save JUST for treatment time. Maybe you can buy stickers and cover the compressor with a new sticker for each completed treatment -- or even have a sticker chart. We did that for potty training and it worked well.
<br />
<br />Hang in there.
<br />
<br />Maybe someone else has some better suggestiosn.
 
W

westonsmom

New member
I am going to CF clinic today and am going to ask about the raspy voice. This question just came up for us too. However, Weston (my son who is four) has had a raspy voice since he began speaking at 9 months of age and he wasn't on any inhaled medications. The GI the other day commented to a doctor in training that you can tell Weston's pulmonary function was down because of the raspy voice. This completely killed me. I didn't say anything because the GI also said some other things that weren't accurate which led me to believe that he didn't read my son's chart (he has only been our doctor since this past summer). I figured I would ask them today at CF visit. I am hoping that they tell me that his adorable voice that everyone loves is just a part of him and not his CF.

As for the vest. Good luck I am still struggling. Have you ever heard of love and logic? It is on here. You may try to use enforceable statements such as: You can ______ as soon as you finish your vest. Or give your child lots of choices that don't really matter. Such as where they want to do their vest, what they want to do while doing their vest, etc. It is hard to keep them there for so long and frustrating. Hang in there. You aren't alone.
 
W

westonsmom

New member
I am going to CF clinic today and am going to ask about the raspy voice. This question just came up for us too. However, Weston (my son who is four) has had a raspy voice since he began speaking at 9 months of age and he wasn't on any inhaled medications. The GI the other day commented to a doctor in training that you can tell Weston's pulmonary function was down because of the raspy voice. This completely killed me. I didn't say anything because the GI also said some other things that weren't accurate which led me to believe that he didn't read my son's chart (he has only been our doctor since this past summer). I figured I would ask them today at CF visit. I am hoping that they tell me that his adorable voice that everyone loves is just a part of him and not his CF.

As for the vest. Good luck I am still struggling. Have you ever heard of love and logic? It is on here. You may try to use enforceable statements such as: You can ______ as soon as you finish your vest. Or give your child lots of choices that don't really matter. Such as where they want to do their vest, what they want to do while doing their vest, etc. It is hard to keep them there for so long and frustrating. Hang in there. You aren't alone.
 
W

westonsmom

New member
I am going to CF clinic today and am going to ask about the raspy voice. This question just came up for us too. However, Weston (my son who is four) has had a raspy voice since he began speaking at 9 months of age and he wasn't on any inhaled medications. The GI the other day commented to a doctor in training that you can tell Weston's pulmonary function was down because of the raspy voice. This completely killed me. I didn't say anything because the GI also said some other things that weren't accurate which led me to believe that he didn't read my son's chart (he has only been our doctor since this past summer). I figured I would ask them today at CF visit. I am hoping that they tell me that his adorable voice that everyone loves is just a part of him and not his CF.

As for the vest. Good luck I am still struggling. Have you ever heard of love and logic? It is on here. You may try to use enforceable statements such as: You can ______ as soon as you finish your vest. Or give your child lots of choices that don't really matter. Such as where they want to do their vest, what they want to do while doing their vest, etc. It is hard to keep them there for so long and frustrating. Hang in there. You aren't alone.
 
W

westonsmom

New member
I am going to CF clinic today and am going to ask about the raspy voice. This question just came up for us too. However, Weston (my son who is four) has had a raspy voice since he began speaking at 9 months of age and he wasn't on any inhaled medications. The GI the other day commented to a doctor in training that you can tell Weston's pulmonary function was down because of the raspy voice. This completely killed me. I didn't say anything because the GI also said some other things that weren't accurate which led me to believe that he didn't read my son's chart (he has only been our doctor since this past summer). I figured I would ask them today at CF visit. I am hoping that they tell me that his adorable voice that everyone loves is just a part of him and not his CF.

As for the vest. Good luck I am still struggling. Have you ever heard of love and logic? It is on here. You may try to use enforceable statements such as: You can ______ as soon as you finish your vest. Or give your child lots of choices that don't really matter. Such as where they want to do their vest, what they want to do while doing their vest, etc. It is hard to keep them there for so long and frustrating. Hang in there. You aren't alone.
 
W

westonsmom

New member
I am going to CF clinic today and am going to ask about the raspy voice. This question just came up for us too. However, Weston (my son who is four) has had a raspy voice since he began speaking at 9 months of age and he wasn't on any inhaled medications. The GI the other day commented to a doctor in training that you can tell Weston's pulmonary function was down because of the raspy voice. This completely killed me. I didn't say anything because the GI also said some other things that weren't accurate which led me to believe that he didn't read my son's chart (he has only been our doctor since this past summer). I figured I would ask them today at CF visit. I am hoping that they tell me that his adorable voice that everyone loves is just a part of him and not his CF.
<br />
<br />As for the vest. Good luck I am still struggling. Have you ever heard of love and logic? It is on here. You may try to use enforceable statements such as: You can ______ as soon as you finish your vest. Or give your child lots of choices that don't really matter. Such as where they want to do their vest, what they want to do while doing their vest, etc. It is hard to keep them there for so long and frustrating. Hang in there. You aren't alone.
 
R

reagansmom

New member
My daughter is two and hates the nebulizer as well. It can be a huge battle, basically I sit with her and hold the nebulizer in place, otherwise she takes it off...she also likes to pop the tubes off her vest.
She doesn't get the hoarse voice too much, but she has not done inhaled antibiotics, just HyperSal and Pulmozyme. She does get really thirsty afterwards. I would ask the doctor if the frequency of the hoarseness is something to worry about, but I think its pretty common.
 
R

reagansmom

New member
My daughter is two and hates the nebulizer as well. It can be a huge battle, basically I sit with her and hold the nebulizer in place, otherwise she takes it off...she also likes to pop the tubes off her vest.
She doesn't get the hoarse voice too much, but she has not done inhaled antibiotics, just HyperSal and Pulmozyme. She does get really thirsty afterwards. I would ask the doctor if the frequency of the hoarseness is something to worry about, but I think its pretty common.
 
R

reagansmom

New member
My daughter is two and hates the nebulizer as well. It can be a huge battle, basically I sit with her and hold the nebulizer in place, otherwise she takes it off...she also likes to pop the tubes off her vest.
She doesn't get the hoarse voice too much, but she has not done inhaled antibiotics, just HyperSal and Pulmozyme. She does get really thirsty afterwards. I would ask the doctor if the frequency of the hoarseness is something to worry about, but I think its pretty common.
 
R

reagansmom

New member
My daughter is two and hates the nebulizer as well. It can be a huge battle, basically I sit with her and hold the nebulizer in place, otherwise she takes it off...she also likes to pop the tubes off her vest.
She doesn't get the hoarse voice too much, but she has not done inhaled antibiotics, just HyperSal and Pulmozyme. She does get really thirsty afterwards. I would ask the doctor if the frequency of the hoarseness is something to worry about, but I think its pretty common.
 
R

reagansmom

New member
My daughter is two and hates the nebulizer as well. It can be a huge battle, basically I sit with her and hold the nebulizer in place, otherwise she takes it off...she also likes to pop the tubes off her vest.
<br />She doesn't get the hoarse voice too much, but she has not done inhaled antibiotics, just HyperSal and Pulmozyme. She does get really thirsty afterwards. I would ask the doctor if the frequency of the hoarseness is something to worry about, but I think its pretty common.
 
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