New mom with CF baby

[TamathaLynn]

Hi my name is Tamatha and I'm the mother of 7 month old Logan. He was diagnosed with Cf at 9 weeks of age. I'm a new mom and already scared f that and doing something wrong and on top of that hae a child with Cf. Now te fear of messing up is even greater! Logan cried almost nonstop after he was born and had extremely bad diarrhea.I was told by doctors that he was a colicy baby.The fact that he is my first they automaticaly assumed that I was an idiot nd didn't know what I was talking about when I told them about all his problems/symptoms. We went threw 3 pediatricians before I found one who actually attempted to help. He started changing his formulas. By the time Logan was 9 weeks old he had been on 7 different formulas, cried almost nonstop, had chroni diarrhea, and had only gained a pound sice he had been born. Finally his doctor sen him to the university hospital here where they admitted him for ailure to thrive. The next day they did the sweat test and it was positive. He was started on enzymes and has been doing ok. He has had alot of GI problems. And at one point he had a cold so his pediatrician didi a chest xray and it showed a mucous plug in the right lung. He has not had any breathing problems but has been doin a neb since his diagnosis for preventative. Well I'm very new to this and still learning and feel extremely dumb about everything. His CF doctor acted as though it wasn't a big deal and said he would cough it up. Well that was 2 months ago. How do you know if its gone? She hasn't even done another xray,when I asked she said that he would cough it up. Iknow you already told me that! So I'm extremely scared that my stupidity in this disease is goin to cost my son. Can anyone help me on this of the mucous plug. His pediatrician said tht usually they have "tune ups". His Cf doctor never mentioned that to me. What's the deal? what is a "tune up"? Will someone please help answer my questions because his doctors aren't doing it.

 

[TamathaLynn]

Hi my name is Tamatha and I'm the mother of 7 month old Logan. He was diagnosed with Cf at 9 weeks of age. I'm a new mom and already scared f that and doing something wrong and on top of that hae a child with Cf. Now te fear of messing up is even greater! Logan cried almost nonstop after he was born and had extremely bad diarrhea.I was told by doctors that he was a colicy baby.The fact that he is my first they automaticaly assumed that I was an idiot nd didn't know what I was talking about when I told them about all his problems/symptoms. We went threw 3 pediatricians before I found one who actually attempted to help. He started changing his formulas. By the time Logan was 9 weeks old he had been on 7 different formulas, cried almost nonstop, had chroni diarrhea, and had only gained a pound sice he had been born. Finally his doctor sen him to the university hospital here where they admitted him for ailure to thrive. The next day they did the sweat test and it was positive. He was started on enzymes and has been doing ok. He has had alot of GI problems. And at one point he had a cold so his pediatrician didi a chest xray and it showed a mucous plug in the right lung. He has not had any breathing problems but has been doin a neb since his diagnosis for preventative. Well I'm very new to this and still learning and feel extremely dumb about everything. His CF doctor acted as though it wasn't a big deal and said he would cough it up. Well that was 2 months ago. How do you know if its gone? She hasn't even done another xray,when I asked she said that he would cough it up. Iknow you already told me that! So I'm extremely scared that my stupidity in this disease is goin to cost my son. Can anyone help me on this of the mucous plug. His pediatrician said tht usually they have "tune ups". His Cf doctor never mentioned that to me. What's the deal? what is a "tune up"? Will someone please help answer my questions because his doctors aren't doing it.

 

[TamathaLynn]

Hi my name is Tamatha and I'm the mother of 7 month old Logan. He was diagnosed with Cf at 9 weeks of age. I'm a new mom and already scared f that and doing something wrong and on top of that hae a child with Cf. Now te fear of messing up is even greater! Logan cried almost nonstop after he was born and had extremely bad diarrhea.I was told by doctors that he was a colicy baby.The fact that he is my first they automaticaly assumed that I was an idiot nd didn't know what I was talking about when I told them about all his problems/symptoms. We went threw 3 pediatricians before I found one who actually attempted to help. He started changing his formulas. By the time Logan was 9 weeks old he had been on 7 different formulas, cried almost nonstop, had chroni diarrhea, and had only gained a pound sice he had been born. Finally his doctor sen him to the university hospital here where they admitted him for ailure to thrive. The next day they did the sweat test and it was positive. He was started on enzymes and has been doing ok. He has had alot of GI problems. And at one point he had a cold so his pediatrician didi a chest xray and it showed a mucous plug in the right lung. He has not had any breathing problems but has been doin a neb since his diagnosis for preventative. Well I'm very new to this and still learning and feel extremely dumb about everything. His CF doctor acted as though it wasn't a big deal and said he would cough it up. Well that was 2 months ago. How do you know if its gone? She hasn't even done another xray,when I asked she said that he would cough it up. Iknow you already told me that! So I'm extremely scared that my stupidity in this disease is goin to cost my son. Can anyone help me on this of the mucous plug. His pediatrician said tht usually they have "tune ups". His Cf doctor never mentioned that to me. What's the deal? what is a "tune up"? Will someone please help answer my questions because his doctors aren't doing it.

 

[Rebjane]

Welcome to this site. I'm sorry about your baby's diagnosis. First of all no question you ever ask is a dumb question. Even the most brilliant CF doctor does not know everything about CF. Always keep asking questions until you feel you are getting a reasonable answer. Also, all CF doctors and CF clinic are not created equal. Some are better than others. It is important to go to an accrediated CF center. You can find out if your CF clinic is accreditted by going to www.cff.org. This is the Cystic Fibrosis Foundation's website and they have a list of CF centers on their website. Is your baby taking enzymes? Do you see a nutritionist at the CF clinic? Nutrition and CF are very important especially with a little baby. Another thing that is important is airway clearance or chest pt. I did chest pt on my daughter with CF since she was a week or two old. We would do the chest pt two times a day for 20 min a piece. My daughter is now 4 and we use a device called the VEST, which is a machine that vibrates and does the chest pt for us. You are the mom and you will know your baby's health the best, because you are with him all the time. Never let the doctors make you feel like you can't ask a question, if they are not treating your baby the way the you feel is best, there are other CF doctors to go to.

wish you all the best.

 

[Rebjane]

Welcome to this site. I'm sorry about your baby's diagnosis. First of all no question you ever ask is a dumb question. Even the most brilliant CF doctor does not know everything about CF. Always keep asking questions until you feel you are getting a reasonable answer. Also, all CF doctors and CF clinic are not created equal. Some are better than others. It is important to go to an accrediated CF center. You can find out if your CF clinic is accreditted by going to www.cff.org. This is the Cystic Fibrosis Foundation's website and they have a list of CF centers on their website. Is your baby taking enzymes? Do you see a nutritionist at the CF clinic? Nutrition and CF are very important especially with a little baby. Another thing that is important is airway clearance or chest pt. I did chest pt on my daughter with CF since she was a week or two old. We would do the chest pt two times a day for 20 min a piece. My daughter is now 4 and we use a device called the VEST, which is a machine that vibrates and does the chest pt for us. You are the mom and you will know your baby's health the best, because you are with him all the time. Never let the doctors make you feel like you can't ask a question, if they are not treating your baby the way the you feel is best, there are other CF doctors to go to.

wish you all the best.

 

[Rebjane]

Welcome to this site. I'm sorry about your baby's diagnosis. First of all no question you ever ask is a dumb question. Even the most brilliant CF doctor does not know everything about CF. Always keep asking questions until you feel you are getting a reasonable answer. Also, all CF doctors and CF clinic are not created equal. Some are better than others. It is important to go to an accrediated CF center. You can find out if your CF clinic is accreditted by going to www.cff.org. This is the Cystic Fibrosis Foundation's website and they have a list of CF centers on their website. Is your baby taking enzymes? Do you see a nutritionist at the CF clinic? Nutrition and CF are very important especially with a little baby. Another thing that is important is airway clearance or chest pt. I did chest pt on my daughter with CF since she was a week or two old. We would do the chest pt two times a day for 20 min a piece. My daughter is now 4 and we use a device called the VEST, which is a machine that vibrates and does the chest pt for us. You are the mom and you will know your baby's health the best, because you are with him all the time. Never let the doctors make you feel like you can't ask a question, if they are not treating your baby the way the you feel is best, there are other CF doctors to go to.

wish you all the best.

 

[Rebjane]

Oh and a "tune-up" is when the admit a person with CF to the hospital depending on the doctor it could be for up to 2 weeks. Ususally you get IV antibiotics, breathing treatments, chest pt and perhaps other treatments to clear out mucus.

 

[Rebjane]

Oh and a "tune-up" is when the admit a person with CF to the hospital depending on the doctor it could be for up to 2 weeks. Ususally you get IV antibiotics, breathing treatments, chest pt and perhaps other treatments to clear out mucus.

 

[Rebjane]

Oh and a "tune-up" is when the admit a person with CF to the hospital depending on the doctor it could be for up to 2 weeks. Ususally you get IV antibiotics, breathing treatments, chest pt and perhaps other treatments to clear out mucus.

 

[JazzysMom]

I agree with everything that Rebecca has said. THe CPT (chest physical therapy) would help loosen any plugs he might have. Often nebs alone dont work. They might open the airways and moisten the sputum, but a CFers sputum is very sticky and it clings to the airways like a vaccum to a rug. I would inquire about learnng CPT or if they arent receptive to your wanting this. I have a link that I can send you showing how to do it. It cant hurt. Its also done on people with pneumonia or other respiratory problems. Its a tool to help bring the sputum up. Being a first time mom is nerve wracking without having CF in the mix. First things is not to be too hard on yourself. Follow your instincts. You are the mom. Not every doctor is right about everything. I am 38 almost 39 & am still learning about CF. Most of that is thanks to this forum. There are lots of people here that have been thru all the phases or are going thru the same phases of post diagnoses that you are. Dont worry about asking too many ?? or "silly" ?? because the old saying of the only silly ?? is the ?? not asked applies here.

 

[JazzysMom]

I agree with everything that Rebecca has said. THe CPT (chest physical therapy) would help loosen any plugs he might have. Often nebs alone dont work. They might open the airways and moisten the sputum, but a CFers sputum is very sticky and it clings to the airways like a vaccum to a rug. I would inquire about learnng CPT or if they arent receptive to your wanting this. I have a link that I can send you showing how to do it. It cant hurt. Its also done on people with pneumonia or other respiratory problems. Its a tool to help bring the sputum up. Being a first time mom is nerve wracking without having CF in the mix. First things is not to be too hard on yourself. Follow your instincts. You are the mom. Not every doctor is right about everything. I am 38 almost 39 & am still learning about CF. Most of that is thanks to this forum. There are lots of people here that have been thru all the phases or are going thru the same phases of post diagnoses that you are. Dont worry about asking too many ?? or "silly" ?? because the old saying of the only silly ?? is the ?? not asked applies here.

 

[JazzysMom]

I agree with everything that Rebecca has said. THe CPT (chest physical therapy) would help loosen any plugs he might have. Often nebs alone dont work. They might open the airways and moisten the sputum, but a CFers sputum is very sticky and it clings to the airways like a vaccum to a rug. I would inquire about learnng CPT or if they arent receptive to your wanting this. I have a link that I can send you showing how to do it. It cant hurt. Its also done on people with pneumonia or other respiratory problems. Its a tool to help bring the sputum up. Being a first time mom is nerve wracking without having CF in the mix. First things is not to be too hard on yourself. Follow your instincts. You are the mom. Not every doctor is right about everything. I am 38 almost 39 & am still learning about CF. Most of that is thanks to this forum. There are lots of people here that have been thru all the phases or are going thru the same phases of post diagnoses that you are. Dont worry about asking too many ?? or "silly" ?? because the old saying of the only silly ?? is the ?? not asked applies here.

 

[Foody]

You have been through so much as a new mom and it is okay to feel exhausted, sad, angry...whatever you wish. It is also okay to ask 50,000 questions in order for you to feel okay with this CF diagnosis. A good doctor will calmly answer each one knowing you are trying to love and protect your son. A good doctor will hold your hand if you need to cry or if you just are having a bad day. There is so much uncertainty with CF it takes awhile to accept it. No doctor can tell you how your son will do and I found this hardest of all at first. If they can't tell me how will I know what to do? But you will know because you are his mother. You are accutely aware of his needs. Look at what you have already done...you wouldn't stop until you found answers, you wouldn't let them tell you were crazy, you pushed and you now have an answer.

The grief and guilt of having a child with CF is a huge part of the first year, at least it was for us. It took myself and my husband at least 2 years to really come to terms with it all. I needed a good grief counselor to help me work through it. She did a therapy technique called EFT (<a target=_blank class=ftalternatingbarlinklarge href="http://www.emofree.com/)">http://www.emofree.com/)</a> which helped me deal with the trauma aspect of his first months of life (lots of issues which were not easy for me to move past). After about 3 months I was in a much better place and found some healthy ways to let go. It is of course just one way and it was what felt good to me.

Just know that you are not alone. You are a great mom and will always do what you know to be best for your son; it will most likely continue to change. Shop around for a clinic and treatment options which sit well with you. Read and research as much as you can so you can discuss and be aware of options. Take care of yourself ALWAYS so you are able to care for him (massages, mom's night out, hot lavendar baths, art, nature whatever you love). For us it got much easier and he is truly healthy and happy 2 year old. You'd never know he has CF aside from the preventative lung care we do and enzymes.

Warmly,

 

[Foody]

You have been through so much as a new mom and it is okay to feel exhausted, sad, angry...whatever you wish. It is also okay to ask 50,000 questions in order for you to feel okay with this CF diagnosis. A good doctor will calmly answer each one knowing you are trying to love and protect your son. A good doctor will hold your hand if you need to cry or if you just are having a bad day. There is so much uncertainty with CF it takes awhile to accept it. No doctor can tell you how your son will do and I found this hardest of all at first. If they can't tell me how will I know what to do? But you will know because you are his mother. You are accutely aware of his needs. Look at what you have already done...you wouldn't stop until you found answers, you wouldn't let them tell you were crazy, you pushed and you now have an answer.

The grief and guilt of having a child with CF is a huge part of the first year, at least it was for us. It took myself and my husband at least 2 years to really come to terms with it all. I needed a good grief counselor to help me work through it. She did a therapy technique called EFT (<a target=_blank class=ftalternatingbarlinklarge href="http://www.emofree.com/)">http://www.emofree.com/)</a> which helped me deal with the trauma aspect of his first months of life (lots of issues which were not easy for me to move past). After about 3 months I was in a much better place and found some healthy ways to let go. It is of course just one way and it was what felt good to me.

Just know that you are not alone. You are a great mom and will always do what you know to be best for your son; it will most likely continue to change. Shop around for a clinic and treatment options which sit well with you. Read and research as much as you can so you can discuss and be aware of options. Take care of yourself ALWAYS so you are able to care for him (massages, mom's night out, hot lavendar baths, art, nature whatever you love). For us it got much easier and he is truly healthy and happy 2 year old. You'd never know he has CF aside from the preventative lung care we do and enzymes.

Warmly,

 

[Foody]

You have been through so much as a new mom and it is okay to feel exhausted, sad, angry...whatever you wish. It is also okay to ask 50,000 questions in order for you to feel okay with this CF diagnosis. A good doctor will calmly answer each one knowing you are trying to love and protect your son. A good doctor will hold your hand if you need to cry or if you just are having a bad day. There is so much uncertainty with CF it takes awhile to accept it. No doctor can tell you how your son will do and I found this hardest of all at first. If they can't tell me how will I know what to do? But you will know because you are his mother. You are accutely aware of his needs. Look at what you have already done...you wouldn't stop until you found answers, you wouldn't let them tell you were crazy, you pushed and you now have an answer.

The grief and guilt of having a child with CF is a huge part of the first year, at least it was for us. It took myself and my husband at least 2 years to really come to terms with it all. I needed a good grief counselor to help me work through it. She did a therapy technique called EFT (<a target=_blank class=ftalternatingbarlinklarge href="http://www.emofree.com/)">http://www.emofree.com/)</a> which helped me deal with the trauma aspect of his first months of life (lots of issues which were not easy for me to move past). After about 3 months I was in a much better place and found some healthy ways to let go. It is of course just one way and it was what felt good to me.

Just know that you are not alone. You are a great mom and will always do what you know to be best for your son; it will most likely continue to change. Shop around for a clinic and treatment options which sit well with you. Read and research as much as you can so you can discuss and be aware of options. Take care of yourself ALWAYS so you are able to care for him (massages, mom's night out, hot lavendar baths, art, nature whatever you love). For us it got much easier and he is truly healthy and happy 2 year old. You'd never know he has CF aside from the preventative lung care we do and enzymes.

Warmly,