Question to Parents of children with CF

[SARAHSARAH253]

My son is almost 5 months old now..and doing very well. We just had our monthly CF clinic, and I had question for the team, but forgot to ask. So, I thought I ask for some help on here. I'm curious when the doctors generally start children on nebulizers? His lungs status says: Exam normal/unchanged from previous.

Do they generally start nebulizer treatments when his lungs sound conjested? I know there is no way to predict how CF will go, but just wondering when some of your children started this portion of care. Thanks...

One, more thing I have been trying really hard to keep my son from going to the doctors when I have had to go. I have two upcoming visits with my doctors this week, and I asked my husband if he could watch our son for one of the appointments. He got angry and asked why I just couldn't take the baby with me. I responded I am trying to keep him out of waiting rooms filled with people with colds this winter...This upset my husband and said "That's it your making him a Bubble Boy". I don't think there is nothing wrong with me just trying to keep my son out of certain places this winter...How did you other monthers handle your first winter with your babies? I really have errands I could run, but somtimes I just choose to skip them...I think I'm making the right choices..but am I taking it to far? Thanks...

 

[SARAHSARAH253]

My son is almost 5 months old now..and doing very well. We just had our monthly CF clinic, and I had question for the team, but forgot to ask. So, I thought I ask for some help on here. I'm curious when the doctors generally start children on nebulizers? His lungs status says: Exam normal/unchanged from previous.

Do they generally start nebulizer treatments when his lungs sound conjested? I know there is no way to predict how CF will go, but just wondering when some of your children started this portion of care. Thanks...

One, more thing I have been trying really hard to keep my son from going to the doctors when I have had to go. I have two upcoming visits with my doctors this week, and I asked my husband if he could watch our son for one of the appointments. He got angry and asked why I just couldn't take the baby with me. I responded I am trying to keep him out of waiting rooms filled with people with colds this winter...This upset my husband and said "That's it your making him a Bubble Boy". I don't think there is nothing wrong with me just trying to keep my son out of certain places this winter...How did you other monthers handle your first winter with your babies? I really have errands I could run, but somtimes I just choose to skip them...I think I'm making the right choices..but am I taking it to far? Thanks...

 

[SARAHSARAH253]

My son is almost 5 months old now..and doing very well. We just had our monthly CF clinic, and I had question for the team, but forgot to ask. So, I thought I ask for some help on here. I'm curious when the doctors generally start children on nebulizers? His lungs status says: Exam normal/unchanged from previous.

Do they generally start nebulizer treatments when his lungs sound conjested? I know there is no way to predict how CF will go, but just wondering when some of your children started this portion of care. Thanks...

One, more thing I have been trying really hard to keep my son from going to the doctors when I have had to go. I have two upcoming visits with my doctors this week, and I asked my husband if he could watch our son for one of the appointments. He got angry and asked why I just couldn't take the baby with me. I responded I am trying to keep him out of waiting rooms filled with people with colds this winter...This upset my husband and said "That's it your making him a Bubble Boy". I don't think there is nothing wrong with me just trying to keep my son out of certain places this winter...How did you other monthers handle your first winter with your babies? I really have errands I could run, but somtimes I just choose to skip them...I think I'm making the right choices..but am I taking it to far? Thanks...

 

[SARAHSARAH253]

My son is almost 5 months old now..and doing very well. We just had our monthly CF clinic, and I had question for the team, but forgot to ask. So, I thought I ask for some help on here. I'm curious when the doctors generally start children on nebulizers? His lungs status says: Exam normal/unchanged from previous.

Do they generally start nebulizer treatments when his lungs sound conjested? I know there is no way to predict how CF will go, but just wondering when some of your children started this portion of care. Thanks...

One, more thing I have been trying really hard to keep my son from going to the doctors when I have had to go. I have two upcoming visits with my doctors this week, and I asked my husband if he could watch our son for one of the appointments. He got angry and asked why I just couldn't take the baby with me. I responded I am trying to keep him out of waiting rooms filled with people with colds this winter...This upset my husband and said "That's it your making him a Bubble Boy". I don't think there is nothing wrong with me just trying to keep my son out of certain places this winter...How did you other monthers handle your first winter with your babies? I really have errands I could run, but somtimes I just choose to skip them...I think I'm making the right choices..but am I taking it to far? Thanks...

 

[SARAHSARAH253]

My son is almost 5 months old now..and doing very well. We just had our monthly CF clinic, and I had question for the team, but forgot to ask. So, I thought I ask for some help on here. I'm curious when the doctors generally start children on nebulizers? His lungs status says: Exam normal/unchanged from previous.

Do they generally start nebulizer treatments when his lungs sound conjested? I know there is no way to predict how CF will go, but just wondering when some of your children started this portion of care. Thanks...

One, more thing I have been trying really hard to keep my son from going to the doctors when I have had to go. I have two upcoming visits with my doctors this week, and I asked my husband if he could watch our son for one of the appointments. He got angry and asked why I just couldn't take the baby with me. I responded I am trying to keep him out of waiting rooms filled with people with colds this winter...This upset my husband and said "That's it your making him a Bubble Boy". I don't think there is nothing wrong with me just trying to keep my son out of certain places this winter...How did you other monthers handle your first winter with your babies? I really have errands I could run, but somtimes I just choose to skip them...I think I'm making the right choices..but am I taking it to far? Thanks...

 

[SuperRyan]

Hi

My name is Gina and I have a 3 1/2 yo with CF. Ryan started his nebulizers at 10 months. He started them actually 5 weeks before he was even diagnosed b/c he had an unresolved pneumonia (which is how they identified that they should test him for CF). So I am not really sure what the rule of thumb is for starting them but I would imagine if he started running into some pulmonary difficulty then they would start the nebulizer treatments immediatly but since your son does not seem to have any lung issues as of yet, maybe this is why they have not started anything and maybe you won't have to <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> I would definitely pose this question to your CF Team.

In reference to your husband: I think that you are definitely making the right choices for your son. Many people don't understand just how quickly our CF children can pick up nasty bugs. The more situations that you can avoid, the better and NO this does not mean that you are turning him into a "Boy in a Bubble" It means that you are making the appropriate decisions to keep your son healthy and alive. No one can ever fault you for this.

There needs to be a balance and this means that both parents have to be on board with the plan of care. It sounds as if maybe your husband has not fully wrapped his head around the CF situation yet. This can happen. Some get on board the CF train alot sooner than others. Don't second guess what you feel is instinctively right for your son's health.

Sorry so long of a response. I hope this helps. Happy to make your aquaintance.

 

[SuperRyan]

Hi

My name is Gina and I have a 3 1/2 yo with CF. Ryan started his nebulizers at 10 months. He started them actually 5 weeks before he was even diagnosed b/c he had an unresolved pneumonia (which is how they identified that they should test him for CF). So I am not really sure what the rule of thumb is for starting them but I would imagine if he started running into some pulmonary difficulty then they would start the nebulizer treatments immediatly but since your son does not seem to have any lung issues as of yet, maybe this is why they have not started anything and maybe you won't have to <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> I would definitely pose this question to your CF Team.

In reference to your husband: I think that you are definitely making the right choices for your son. Many people don't understand just how quickly our CF children can pick up nasty bugs. The more situations that you can avoid, the better and NO this does not mean that you are turning him into a "Boy in a Bubble" It means that you are making the appropriate decisions to keep your son healthy and alive. No one can ever fault you for this.

There needs to be a balance and this means that both parents have to be on board with the plan of care. It sounds as if maybe your husband has not fully wrapped his head around the CF situation yet. This can happen. Some get on board the CF train alot sooner than others. Don't second guess what you feel is instinctively right for your son's health.

Sorry so long of a response. I hope this helps. Happy to make your aquaintance.

 

[SuperRyan]

Hi

My name is Gina and I have a 3 1/2 yo with CF. Ryan started his nebulizers at 10 months. He started them actually 5 weeks before he was even diagnosed b/c he had an unresolved pneumonia (which is how they identified that they should test him for CF). So I am not really sure what the rule of thumb is for starting them but I would imagine if he started running into some pulmonary difficulty then they would start the nebulizer treatments immediatly but since your son does not seem to have any lung issues as of yet, maybe this is why they have not started anything and maybe you won't have to <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> I would definitely pose this question to your CF Team.

In reference to your husband: I think that you are definitely making the right choices for your son. Many people don't understand just how quickly our CF children can pick up nasty bugs. The more situations that you can avoid, the better and NO this does not mean that you are turning him into a "Boy in a Bubble" It means that you are making the appropriate decisions to keep your son healthy and alive. No one can ever fault you for this.

There needs to be a balance and this means that both parents have to be on board with the plan of care. It sounds as if maybe your husband has not fully wrapped his head around the CF situation yet. This can happen. Some get on board the CF train alot sooner than others. Don't second guess what you feel is instinctively right for your son's health.

Sorry so long of a response. I hope this helps. Happy to make your aquaintance.

 

[SuperRyan]

Hi

My name is Gina and I have a 3 1/2 yo with CF. Ryan started his nebulizers at 10 months. He started them actually 5 weeks before he was even diagnosed b/c he had an unresolved pneumonia (which is how they identified that they should test him for CF). So I am not really sure what the rule of thumb is for starting them but I would imagine if he started running into some pulmonary difficulty then they would start the nebulizer treatments immediatly but since your son does not seem to have any lung issues as of yet, maybe this is why they have not started anything and maybe you won't have to <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> I would definitely pose this question to your CF Team.

In reference to your husband: I think that you are definitely making the right choices for your son. Many people don't understand just how quickly our CF children can pick up nasty bugs. The more situations that you can avoid, the better and NO this does not mean that you are turning him into a "Boy in a Bubble" It means that you are making the appropriate decisions to keep your son healthy and alive. No one can ever fault you for this.

There needs to be a balance and this means that both parents have to be on board with the plan of care. It sounds as if maybe your husband has not fully wrapped his head around the CF situation yet. This can happen. Some get on board the CF train alot sooner than others. Don't second guess what you feel is instinctively right for your son's health.

Sorry so long of a response. I hope this helps. Happy to make your aquaintance.

 

[SuperRyan]

Hi

My name is Gina and I have a 3 1/2 yo with CF. Ryan started his nebulizers at 10 months. He started them actually 5 weeks before he was even diagnosed b/c he had an unresolved pneumonia (which is how they identified that they should test him for CF). So I am not really sure what the rule of thumb is for starting them but I would imagine if he started running into some pulmonary difficulty then they would start the nebulizer treatments immediatly but since your son does not seem to have any lung issues as of yet, maybe this is why they have not started anything and maybe you won't have to <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> I would definitely pose this question to your CF Team.

In reference to your husband: I think that you are definitely making the right choices for your son. Many people don't understand just how quickly our CF children can pick up nasty bugs. The more situations that you can avoid, the better and NO this does not mean that you are turning him into a "Boy in a Bubble" It means that you are making the appropriate decisions to keep your son healthy and alive. No one can ever fault you for this.

There needs to be a balance and this means that both parents have to be on board with the plan of care. It sounds as if maybe your husband has not fully wrapped his head around the CF situation yet. This can happen. Some get on board the CF train alot sooner than others. Don't second guess what you feel is instinctively right for your son's health.

Sorry so long of a response. I hope this helps. Happy to make your aquaintance.

 

[Ratatosk]

DS was diagnosed at 5 days and was receiving CPT and nebs 3-4 times a day. This was at an accreditted CF clinic/hospital in the City where he was recovering from surgery to correct a bowel obstruction. They were more proactive. Was a bit of a shock when he was 3 months old and we took him to his first local CF clinic and they were wondering why we bothered doing it because his lungs weren't affected yet. We just continued doing what we were doing.

A couple of years ago there was an article about us and great strides and one of the mom's of a newly diagnosed baby locally, read about our doing cpt and nebs and went to the respiratory therapy department and asked them to teach her how to do CPT. Couldn't get nebs prescribed until a year or so later when her son got pneumonia and then was told only to do so when he was congested.

As far as the clinic -- clinics/hospitals are germy places. But if you have to take him with you, couldn't you keep him confined to his carseat carrier and a light blanket thrown over him? Stay away from other patients? That's pretty much what we did during DS's first year when we took him to the cf clinic and clinic.

Oh and as far as other errands -- I took DS grocery shopping, etc. -- just kept him in his car seat carrier. Brought along hand sanitizer and used the cart wipes at the store. The only thing I wasn't comfortable about was taking him to see Santa when he was 6 months old -- was the WORST flu season EVER and I was worried about that or RSV. He survived. Last summer he drove me NUTS with sticking leaves & rocks up his nose, ate a cheeto off the locker room floor at the pool, found chewed gum at the playground and popped it into his mouth, licked the counter at Kohls a few months ago, licked the door knob at grandma's house on thanksgiving with about 50 people going in and out. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

DS was diagnosed at 5 days and was receiving CPT and nebs 3-4 times a day. This was at an accreditted CF clinic/hospital in the City where he was recovering from surgery to correct a bowel obstruction. They were more proactive. Was a bit of a shock when he was 3 months old and we took him to his first local CF clinic and they were wondering why we bothered doing it because his lungs weren't affected yet. We just continued doing what we were doing.

A couple of years ago there was an article about us and great strides and one of the mom's of a newly diagnosed baby locally, read about our doing cpt and nebs and went to the respiratory therapy department and asked them to teach her how to do CPT. Couldn't get nebs prescribed until a year or so later when her son got pneumonia and then was told only to do so when he was congested.

As far as the clinic -- clinics/hospitals are germy places. But if you have to take him with you, couldn't you keep him confined to his carseat carrier and a light blanket thrown over him? Stay away from other patients? That's pretty much what we did during DS's first year when we took him to the cf clinic and clinic.

Oh and as far as other errands -- I took DS grocery shopping, etc. -- just kept him in his car seat carrier. Brought along hand sanitizer and used the cart wipes at the store. The only thing I wasn't comfortable about was taking him to see Santa when he was 6 months old -- was the WORST flu season EVER and I was worried about that or RSV. He survived. Last summer he drove me NUTS with sticking leaves & rocks up his nose, ate a cheeto off the locker room floor at the pool, found chewed gum at the playground and popped it into his mouth, licked the counter at Kohls a few months ago, licked the door knob at grandma's house on thanksgiving with about 50 people going in and out. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

DS was diagnosed at 5 days and was receiving CPT and nebs 3-4 times a day. This was at an accreditted CF clinic/hospital in the City where he was recovering from surgery to correct a bowel obstruction. They were more proactive. Was a bit of a shock when he was 3 months old and we took him to his first local CF clinic and they were wondering why we bothered doing it because his lungs weren't affected yet. We just continued doing what we were doing.

A couple of years ago there was an article about us and great strides and one of the mom's of a newly diagnosed baby locally, read about our doing cpt and nebs and went to the respiratory therapy department and asked them to teach her how to do CPT. Couldn't get nebs prescribed until a year or so later when her son got pneumonia and then was told only to do so when he was congested.

As far as the clinic -- clinics/hospitals are germy places. But if you have to take him with you, couldn't you keep him confined to his carseat carrier and a light blanket thrown over him? Stay away from other patients? That's pretty much what we did during DS's first year when we took him to the cf clinic and clinic.

Oh and as far as other errands -- I took DS grocery shopping, etc. -- just kept him in his car seat carrier. Brought along hand sanitizer and used the cart wipes at the store. The only thing I wasn't comfortable about was taking him to see Santa when he was 6 months old -- was the WORST flu season EVER and I was worried about that or RSV. He survived. Last summer he drove me NUTS with sticking leaves & rocks up his nose, ate a cheeto off the locker room floor at the pool, found chewed gum at the playground and popped it into his mouth, licked the counter at Kohls a few months ago, licked the door knob at grandma's house on thanksgiving with about 50 people going in and out. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

DS was diagnosed at 5 days and was receiving CPT and nebs 3-4 times a day. This was at an accreditted CF clinic/hospital in the City where he was recovering from surgery to correct a bowel obstruction. They were more proactive. Was a bit of a shock when he was 3 months old and we took him to his first local CF clinic and they were wondering why we bothered doing it because his lungs weren't affected yet. We just continued doing what we were doing.

A couple of years ago there was an article about us and great strides and one of the mom's of a newly diagnosed baby locally, read about our doing cpt and nebs and went to the respiratory therapy department and asked them to teach her how to do CPT. Couldn't get nebs prescribed until a year or so later when her son got pneumonia and then was told only to do so when he was congested.

As far as the clinic -- clinics/hospitals are germy places. But if you have to take him with you, couldn't you keep him confined to his carseat carrier and a light blanket thrown over him? Stay away from other patients? That's pretty much what we did during DS's first year when we took him to the cf clinic and clinic.

Oh and as far as other errands -- I took DS grocery shopping, etc. -- just kept him in his car seat carrier. Brought along hand sanitizer and used the cart wipes at the store. The only thing I wasn't comfortable about was taking him to see Santa when he was 6 months old -- was the WORST flu season EVER and I was worried about that or RSV. He survived. Last summer he drove me NUTS with sticking leaves & rocks up his nose, ate a cheeto off the locker room floor at the pool, found chewed gum at the playground and popped it into his mouth, licked the counter at Kohls a few months ago, licked the door knob at grandma's house on thanksgiving with about 50 people going in and out. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

DS was diagnosed at 5 days and was receiving CPT and nebs 3-4 times a day. This was at an accreditted CF clinic/hospital in the City where he was recovering from surgery to correct a bowel obstruction. They were more proactive. Was a bit of a shock when he was 3 months old and we took him to his first local CF clinic and they were wondering why we bothered doing it because his lungs weren't affected yet. We just continued doing what we were doing.

A couple of years ago there was an article about us and great strides and one of the mom's of a newly diagnosed baby locally, read about our doing cpt and nebs and went to the respiratory therapy department and asked them to teach her how to do CPT. Couldn't get nebs prescribed until a year or so later when her son got pneumonia and then was told only to do so when he was congested.

As far as the clinic -- clinics/hospitals are germy places. But if you have to take him with you, couldn't you keep him confined to his carseat carrier and a light blanket thrown over him? Stay away from other patients? That's pretty much what we did during DS's first year when we took him to the cf clinic and clinic.

Oh and as far as other errands -- I took DS grocery shopping, etc. -- just kept him in his car seat carrier. Brought along hand sanitizer and used the cart wipes at the store. The only thing I wasn't comfortable about was taking him to see Santa when he was 6 months old -- was the WORST flu season EVER and I was worried about that or RSV. He survived. Last summer he drove me NUTS with sticking leaves & rocks up his nose, ate a cheeto off the locker room floor at the pool, found chewed gum at the playground and popped it into his mouth, licked the counter at Kohls a few months ago, licked the door knob at grandma's house on thanksgiving with about 50 people going in and out. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MargaritaChic]

Hi. My Daughter Emma was dx'ed with CF at 7 days old. She is now a little more than 1 month old. So far she only has pancreatic issues. The doctors at our CF Center had us order a nebulizer when Emma was 3 weeks old. We will be doing her first treatment tonight. They should not be waiting until your child has lung issues before doing this treatment. You should be starting it before your child has any lung issues. Treatment should be proactive. If you wait until there are problems then damage may already be done.

As for taking your child out during cold season. I agree with you. Limit your child's exposure to other people. Better safe than sorry.

 

[MargaritaChic]

Hi. My Daughter Emma was dx'ed with CF at 7 days old. She is now a little more than 1 month old. So far she only has pancreatic issues. The doctors at our CF Center had us order a nebulizer when Emma was 3 weeks old. We will be doing her first treatment tonight. They should not be waiting until your child has lung issues before doing this treatment. You should be starting it before your child has any lung issues. Treatment should be proactive. If you wait until there are problems then damage may already be done.

As for taking your child out during cold season. I agree with you. Limit your child's exposure to other people. Better safe than sorry.

 

[MargaritaChic]

Hi. My Daughter Emma was dx'ed with CF at 7 days old. She is now a little more than 1 month old. So far she only has pancreatic issues. The doctors at our CF Center had us order a nebulizer when Emma was 3 weeks old. We will be doing her first treatment tonight. They should not be waiting until your child has lung issues before doing this treatment. You should be starting it before your child has any lung issues. Treatment should be proactive. If you wait until there are problems then damage may already be done.

As for taking your child out during cold season. I agree with you. Limit your child's exposure to other people. Better safe than sorry.

 

[MargaritaChic]

Hi. My Daughter Emma was dx'ed with CF at 7 days old. She is now a little more than 1 month old. So far she only has pancreatic issues. The doctors at our CF Center had us order a nebulizer when Emma was 3 weeks old. We will be doing her first treatment tonight. They should not be waiting until your child has lung issues before doing this treatment. You should be starting it before your child has any lung issues. Treatment should be proactive. If you wait until there are problems then damage may already be done.

As for taking your child out during cold season. I agree with you. Limit your child's exposure to other people. Better safe than sorry.

 

[MargaritaChic]

Hi. My Daughter Emma was dx'ed with CF at 7 days old. She is now a little more than 1 month old. So far she only has pancreatic issues. The doctors at our CF Center had us order a nebulizer when Emma was 3 weeks old. We will be doing her first treatment tonight. They should not be waiting until your child has lung issues before doing this treatment. You should be starting it before your child has any lung issues. Treatment should be proactive. If you wait until there are problems then damage may already be done.

As for taking your child out during cold season. I agree with you. Limit your child's exposure to other people. Better safe than sorry.