Any similar stories?

[chattyfamily]

Hi, I am new to this site. This is my first post. My one year old son, born 3-17-06 was just diagnosed on February 20th. He has 2 mutations, DF508 and 1717G>A. He was a very difficult baby, I thought I would have it down pat by the third! He had bulky stools, but most obvious was his growth. He was failure to thrive until they did 2 sweat tests, both results in the 100's and then the genetic test. He is on enzymes which have helped a ton! He has gained 4 lbs. since diagnosis! He is now 19lbs. He has not had any lung problems so far but just tested positive for staphylococcus aureus in his last throat culture. I really don't know what that means. Can anyone sum that up?
We have not started PT because of acid reflux, but I suspect we will start it soon. We have an appointment tomorrow. How young do you start the airway clearances? Did anyone start them without any respiratory problems? Is it something we need to start now as a preventative measure? How old do they have to be to use the vest? My feeling is if they are going to eventually have to do PT, I would l think start it early so they get used to it.
I don't know, everything is so new. Right now it is just enzymes, Prevacid, Singulair, 2 albuterol breathing treaments and vitamins. I know every case is different, but is it enevitable that we will have to add more to our regimen? What are some things that I can realistically expect that maybe the drs. don't want to speculate about with me?
I know I have asked a lot of ??'s, but any answers or similar stories would be great.
Thanks,
Melissa
Mom to 3!
Son:
Porter (3/17/07)- CF - Delta F508 and 1717G>A
and two daughters:
Macey (3/02/03) - no CF, Carrier - Delta F508
and
Sydney (8/18/99) - No CF, Not a carrier

 

[chattyfamily]

Hi, I am new to this site. This is my first post. My one year old son, born 3-17-06 was just diagnosed on February 20th. He has 2 mutations, DF508 and 1717G>A. He was a very difficult baby, I thought I would have it down pat by the third! He had bulky stools, but most obvious was his growth. He was failure to thrive until they did 2 sweat tests, both results in the 100's and then the genetic test. He is on enzymes which have helped a ton! He has gained 4 lbs. since diagnosis! He is now 19lbs. He has not had any lung problems so far but just tested positive for staphylococcus aureus in his last throat culture. I really don't know what that means. Can anyone sum that up?
We have not started PT because of acid reflux, but I suspect we will start it soon. We have an appointment tomorrow. How young do you start the airway clearances? Did anyone start them without any respiratory problems? Is it something we need to start now as a preventative measure? How old do they have to be to use the vest? My feeling is if they are going to eventually have to do PT, I would l think start it early so they get used to it.
I don't know, everything is so new. Right now it is just enzymes, Prevacid, Singulair, 2 albuterol breathing treaments and vitamins. I know every case is different, but is it enevitable that we will have to add more to our regimen? What are some things that I can realistically expect that maybe the drs. don't want to speculate about with me?
I know I have asked a lot of ??'s, but any answers or similar stories would be great.
Thanks,
Melissa
Mom to 3!
Son:
Porter (3/17/07)- CF - Delta F508 and 1717G>A
and two daughters:
Macey (3/02/03) - no CF, Carrier - Delta F508
and
Sydney (8/18/99) - No CF, Not a carrier

 

[chattyfamily]

Hi, I am new to this site. This is my first post. My one year old son, born 3-17-06 was just diagnosed on February 20th. He has 2 mutations, DF508 and 1717G>A. He was a very difficult baby, I thought I would have it down pat by the third! He had bulky stools, but most obvious was his growth. He was failure to thrive until they did 2 sweat tests, both results in the 100's and then the genetic test. He is on enzymes which have helped a ton! He has gained 4 lbs. since diagnosis! He is now 19lbs. He has not had any lung problems so far but just tested positive for staphylococcus aureus in his last throat culture. I really don't know what that means. Can anyone sum that up?
We have not started PT because of acid reflux, but I suspect we will start it soon. We have an appointment tomorrow. How young do you start the airway clearances? Did anyone start them without any respiratory problems? Is it something we need to start now as a preventative measure? How old do they have to be to use the vest? My feeling is if they are going to eventually have to do PT, I would l think start it early so they get used to it.
I don't know, everything is so new. Right now it is just enzymes, Prevacid, Singulair, 2 albuterol breathing treaments and vitamins. I know every case is different, but is it enevitable that we will have to add more to our regimen? What are some things that I can realistically expect that maybe the drs. don't want to speculate about with me?
I know I have asked a lot of ??'s, but any answers or similar stories would be great.
Thanks,
Melissa
Mom to 3!
Son:
Porter (3/17/07)- CF - Delta F508 and 1717G>A
and two daughters:
Macey (3/02/03) - no CF, Carrier - Delta F508
and
Sydney (8/18/99) - No CF, Not a carrier

 

[NoExcuses]

I just replied to you here:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=18357&enterthread=y">http://forums.cysticfibrosis.c...id=18357&enterthread=y</a>

 

[NoExcuses]

I just replied to you here:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=18357&enterthread=y">http://forums.cysticfibrosis.c...id=18357&enterthread=y</a>

 

[NoExcuses]

I just replied to you here:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=18357&enterthread=y">http://forums.cysticfibrosis.c...id=18357&enterthread=y</a>

 

[coltsfan715]

Hi There,

I am glad that you found the site I think you will get mountains of support and information that you are seeking.

I myself am 24 and have CF. I was diagnosed on my first birthday after having issues the entire first year. I was failure to thrive after about 6 months the weight just started dropping and I had chest infection after chest infection. I am Double DeltaF508 (I have two copies of DF508). I was diagnosed with CF related diabetes at 17 and am currently waiting for a lung transplant.

As for what you can expect med wise. Yes most likely over the years you will have to add meds to your sons regimine. When you will have to add them no one can really say. Your docs may decide to add some meds as preventive measures and some may be added because they are necessary. For instance - he may be put on Pulmozyme (an aerosol treatment) in a few years to help thin any secretions he has that may be a preventive measure OR they may put him on TOBI (an aerosol antibiotic) to treat Psuedomonas IF he starts culturing it and that would be more out of necessity.

Typically more medications are added over time because more things become affected within our systems. As for CPT I think it would be a great idea to get him started on it once he can handle it with the reflux. It never hurts to start it early - it can be preventive AND help the child get used to doing it and having it as a part of their lives. As for the Vest I think the youngest age for the vest is around 2 years but I am not positive. I am sure some other parents will respond and they will know.

It is hard for anyone to say what your experience with this disease will be like. Even if you have the same mutations as another person it does not mean that your situations will be the same. Many factors contribute to a persons well being with this disease. Having them in a smoke FREE environment is an important thing, keeping them active, making sure they take their meds, making sure they eat well. Alot goes into the care.

Also you may have to deal with hospitalizations with your son. I think that is the hardest thing to get used too. If he is culturing a bacteria AND it is out of control and causing him problems. They may decide to admit him to the hospital. There are some bacteria that are more of a concern to them than others. For some reason Staph. (the bacteria your sonb cultured) seems to be a bacteria that many med facilities do not treat unless it is causing symptoms and is becoming problematic for the patient. Your son culturing Staph. on a throat culture basically means that he has that bacteria in his sputum in the back of his throat. Since it is in the back of his throat it is also likely that the same bacteria is in his lungs as well. It is important to know what kinds of bacteria your son cultures and is growing in his lungs and such because if he gets sick they will know what they problem is. If he were sick and coughing and feverish and so on they could do a culture and see that he is only growing Staph so that must be the problem. Also from the culture they can find out what medications the bacteria is sensitive too, so they know that the meds they are giving you are actually treating the problem.

I hope that all makes sense. They may also at times choose NOT to admit your son right away if he is sick but to give him an oral antibiotic first and see if that helps. It really just depends on the situation.

I will stop now, for fear of rambling on. I hope some of that was helpful to you and that many others respond. There is a wealth of knowledge from personal experience on this website.

I am glad you are here to get the information.

Take Care and I hope your son continues to do well and keeps gaining weight!
Lindsey

 

[coltsfan715]

Hi There,

I am glad that you found the site I think you will get mountains of support and information that you are seeking.

I myself am 24 and have CF. I was diagnosed on my first birthday after having issues the entire first year. I was failure to thrive after about 6 months the weight just started dropping and I had chest infection after chest infection. I am Double DeltaF508 (I have two copies of DF508). I was diagnosed with CF related diabetes at 17 and am currently waiting for a lung transplant.

As for what you can expect med wise. Yes most likely over the years you will have to add meds to your sons regimine. When you will have to add them no one can really say. Your docs may decide to add some meds as preventive measures and some may be added because they are necessary. For instance - he may be put on Pulmozyme (an aerosol treatment) in a few years to help thin any secretions he has that may be a preventive measure OR they may put him on TOBI (an aerosol antibiotic) to treat Psuedomonas IF he starts culturing it and that would be more out of necessity.

Typically more medications are added over time because more things become affected within our systems. As for CPT I think it would be a great idea to get him started on it once he can handle it with the reflux. It never hurts to start it early - it can be preventive AND help the child get used to doing it and having it as a part of their lives. As for the Vest I think the youngest age for the vest is around 2 years but I am not positive. I am sure some other parents will respond and they will know.

It is hard for anyone to say what your experience with this disease will be like. Even if you have the same mutations as another person it does not mean that your situations will be the same. Many factors contribute to a persons well being with this disease. Having them in a smoke FREE environment is an important thing, keeping them active, making sure they take their meds, making sure they eat well. Alot goes into the care.

Also you may have to deal with hospitalizations with your son. I think that is the hardest thing to get used too. If he is culturing a bacteria AND it is out of control and causing him problems. They may decide to admit him to the hospital. There are some bacteria that are more of a concern to them than others. For some reason Staph. (the bacteria your sonb cultured) seems to be a bacteria that many med facilities do not treat unless it is causing symptoms and is becoming problematic for the patient. Your son culturing Staph. on a throat culture basically means that he has that bacteria in his sputum in the back of his throat. Since it is in the back of his throat it is also likely that the same bacteria is in his lungs as well. It is important to know what kinds of bacteria your son cultures and is growing in his lungs and such because if he gets sick they will know what they problem is. If he were sick and coughing and feverish and so on they could do a culture and see that he is only growing Staph so that must be the problem. Also from the culture they can find out what medications the bacteria is sensitive too, so they know that the meds they are giving you are actually treating the problem.

I hope that all makes sense. They may also at times choose NOT to admit your son right away if he is sick but to give him an oral antibiotic first and see if that helps. It really just depends on the situation.

I will stop now, for fear of rambling on. I hope some of that was helpful to you and that many others respond. There is a wealth of knowledge from personal experience on this website.

I am glad you are here to get the information.

Take Care and I hope your son continues to do well and keeps gaining weight!
Lindsey

 

[coltsfan715]

Hi There,

I am glad that you found the site I think you will get mountains of support and information that you are seeking.

I myself am 24 and have CF. I was diagnosed on my first birthday after having issues the entire first year. I was failure to thrive after about 6 months the weight just started dropping and I had chest infection after chest infection. I am Double DeltaF508 (I have two copies of DF508). I was diagnosed with CF related diabetes at 17 and am currently waiting for a lung transplant.

As for what you can expect med wise. Yes most likely over the years you will have to add meds to your sons regimine. When you will have to add them no one can really say. Your docs may decide to add some meds as preventive measures and some may be added because they are necessary. For instance - he may be put on Pulmozyme (an aerosol treatment) in a few years to help thin any secretions he has that may be a preventive measure OR they may put him on TOBI (an aerosol antibiotic) to treat Psuedomonas IF he starts culturing it and that would be more out of necessity.

Typically more medications are added over time because more things become affected within our systems. As for CPT I think it would be a great idea to get him started on it once he can handle it with the reflux. It never hurts to start it early - it can be preventive AND help the child get used to doing it and having it as a part of their lives. As for the Vest I think the youngest age for the vest is around 2 years but I am not positive. I am sure some other parents will respond and they will know.

It is hard for anyone to say what your experience with this disease will be like. Even if you have the same mutations as another person it does not mean that your situations will be the same. Many factors contribute to a persons well being with this disease. Having them in a smoke FREE environment is an important thing, keeping them active, making sure they take their meds, making sure they eat well. Alot goes into the care.

Also you may have to deal with hospitalizations with your son. I think that is the hardest thing to get used too. If he is culturing a bacteria AND it is out of control and causing him problems. They may decide to admit him to the hospital. There are some bacteria that are more of a concern to them than others. For some reason Staph. (the bacteria your sonb cultured) seems to be a bacteria that many med facilities do not treat unless it is causing symptoms and is becoming problematic for the patient. Your son culturing Staph. on a throat culture basically means that he has that bacteria in his sputum in the back of his throat. Since it is in the back of his throat it is also likely that the same bacteria is in his lungs as well. It is important to know what kinds of bacteria your son cultures and is growing in his lungs and such because if he gets sick they will know what they problem is. If he were sick and coughing and feverish and so on they could do a culture and see that he is only growing Staph so that must be the problem. Also from the culture they can find out what medications the bacteria is sensitive too, so they know that the meds they are giving you are actually treating the problem.

I hope that all makes sense. They may also at times choose NOT to admit your son right away if he is sick but to give him an oral antibiotic first and see if that helps. It really just depends on the situation.

I will stop now, for fear of rambling on. I hope some of that was helpful to you and that many others respond. There is a wealth of knowledge from personal experience on this website.

I am glad you are here to get the information.

Take Care and I hope your son continues to do well and keeps gaining weight!
Lindsey

 

[chattyfamily]

Thank you so much. I have not been very emotional over the past month or two (trying to be strong for hubby and kids) but reading people's experiences gets me a little. Half for the fear of what is to come and half for the kindness and comfort in similar stories. Thank you.

 

[chattyfamily]

Thank you so much. I have not been very emotional over the past month or two (trying to be strong for hubby and kids) but reading people's experiences gets me a little. Half for the fear of what is to come and half for the kindness and comfort in similar stories. Thank you.

 

[chattyfamily]

Thank you so much. I have not been very emotional over the past month or two (trying to be strong for hubby and kids) but reading people's experiences gets me a little. Half for the fear of what is to come and half for the kindness and comfort in similar stories. Thank you.

 

[CFMOM65]

hi melissa i have 2 girls 1 9 yrs ol w/o cf and my newest 16 months w/ cf she was diagnosed @ 2 weeks old from the time she was diagnosed she has been on albuterol twice a day and pulmozyme once a day in the am both breathing treatments followed by cpt chest therapy there r 6 regions and u pat them on each region for 5 min each your pulminoligist can show u , its funny that u mentioned him to be a difficult baby because so was she and still is shes very strong willed , shes on prevacid for acid reflux and at 9 months old she had a hospital stay for rectal prolapse and she caught pseudonomas thats one of those bacterias they can culture just like he cultured pos 4 staph since then her lung dr has her on a breathing treatment 4 it called tobi she does it 28 days on and 28 days off 4 the rest of her life . shes also on vitamins called adeks i mix it in her pediasure, she has her enzymes wich i open the capsules and put it in applesauce and spoon feed it 2 her before each meal or snack ( anything that has fat or protein in it) shes on a medicine called actigall for her liver , her liver enzymes have been high since she was 2 mnths old and the actigall keeps them down she also takes miralax 4 constipation since the rectal prolapse and an additionall vit k supplement. her 1 st yr was hard alot of hospital stays those i think by far r the hardest times 2 deal with but u get thru it . she was faILURE 2 THRIVE @ 9 mnths old she was on the 3 rd percentile my trick was pediasur instead of milk and boost pudding it comes in chocolate and vanilla she likes the chocolate they are tiny little 5 oz cans 240 calories and they taste good u can order them only @ your target pharmacy they come in packs of 4 its 5.99 for a 4 pack expensive but well worth it at first i gave to her in the am and nighttime snack , i had to cut the am pudding out because she was gaining to much now she just gets a nighttime pudding and she in the 50 th percentile for weight . this yr has been really good only 1 overnight hospital stay for a vit k defficiency and sinus issues, i have heard that there is a new breathing treatment out called hypertonic saline its based on a study done in australia but i think there 2 young for it but i plan on asking about it on her next visit w her lung dr wich she sees every 3 mnths 4 a visit and 2 have a throat culture. the vest is something else i wanted 2 ask her dr about because when she was little little treatments & cpt put her 2 sleep now that shes older she likes 2 fight me on it , i think its 2 yrs old though. im new to this website as well and i find it very helpful i'v also read 2 books wich were very helpful 1st CYSTIC FIBROSIS everything you need to know by WAYNE KEPRON, MD FRCPC and 2nd is CYSTIC FIBROSIS THIRD EDITION A GUIDLINE FOR PATIENT AND FAMILY by DAVID M. ORENSTEIN i had the first one was a library book the 2nd i had 2 order from barnes and nobles iknow i wrote a novel here but i know what ypur going thru take it a day at a time hope this was of some help lots of luck

cf mom

daughter 9 yrs old w/o cf & baby girl 16 mnths w/ cf deltaf508

 

[CFMOM65]

hi melissa i have 2 girls 1 9 yrs ol w/o cf and my newest 16 months w/ cf she was diagnosed @ 2 weeks old from the time she was diagnosed she has been on albuterol twice a day and pulmozyme once a day in the am both breathing treatments followed by cpt chest therapy there r 6 regions and u pat them on each region for 5 min each your pulminoligist can show u , its funny that u mentioned him to be a difficult baby because so was she and still is shes very strong willed , shes on prevacid for acid reflux and at 9 months old she had a hospital stay for rectal prolapse and she caught pseudonomas thats one of those bacterias they can culture just like he cultured pos 4 staph since then her lung dr has her on a breathing treatment 4 it called tobi she does it 28 days on and 28 days off 4 the rest of her life . shes also on vitamins called adeks i mix it in her pediasure, she has her enzymes wich i open the capsules and put it in applesauce and spoon feed it 2 her before each meal or snack ( anything that has fat or protein in it) shes on a medicine called actigall for her liver , her liver enzymes have been high since she was 2 mnths old and the actigall keeps them down she also takes miralax 4 constipation since the rectal prolapse and an additionall vit k supplement. her 1 st yr was hard alot of hospital stays those i think by far r the hardest times 2 deal with but u get thru it . she was faILURE 2 THRIVE @ 9 mnths old she was on the 3 rd percentile my trick was pediasur instead of milk and boost pudding it comes in chocolate and vanilla she likes the chocolate they are tiny little 5 oz cans 240 calories and they taste good u can order them only @ your target pharmacy they come in packs of 4 its 5.99 for a 4 pack expensive but well worth it at first i gave to her in the am and nighttime snack , i had to cut the am pudding out because she was gaining to much now she just gets a nighttime pudding and she in the 50 th percentile for weight . this yr has been really good only 1 overnight hospital stay for a vit k defficiency and sinus issues, i have heard that there is a new breathing treatment out called hypertonic saline its based on a study done in australia but i think there 2 young for it but i plan on asking about it on her next visit w her lung dr wich she sees every 3 mnths 4 a visit and 2 have a throat culture. the vest is something else i wanted 2 ask her dr about because when she was little little treatments & cpt put her 2 sleep now that shes older she likes 2 fight me on it , i think its 2 yrs old though. im new to this website as well and i find it very helpful i'v also read 2 books wich were very helpful 1st CYSTIC FIBROSIS everything you need to know by WAYNE KEPRON, MD FRCPC and 2nd is CYSTIC FIBROSIS THIRD EDITION A GUIDLINE FOR PATIENT AND FAMILY by DAVID M. ORENSTEIN i had the first one was a library book the 2nd i had 2 order from barnes and nobles iknow i wrote a novel here but i know what ypur going thru take it a day at a time hope this was of some help lots of luck

cf mom

daughter 9 yrs old w/o cf & baby girl 16 mnths w/ cf deltaf508

 

[CFMOM65]

hi melissa i have 2 girls 1 9 yrs ol w/o cf and my newest 16 months w/ cf she was diagnosed @ 2 weeks old from the time she was diagnosed she has been on albuterol twice a day and pulmozyme once a day in the am both breathing treatments followed by cpt chest therapy there r 6 regions and u pat them on each region for 5 min each your pulminoligist can show u , its funny that u mentioned him to be a difficult baby because so was she and still is shes very strong willed , shes on prevacid for acid reflux and at 9 months old she had a hospital stay for rectal prolapse and she caught pseudonomas thats one of those bacterias they can culture just like he cultured pos 4 staph since then her lung dr has her on a breathing treatment 4 it called tobi she does it 28 days on and 28 days off 4 the rest of her life . shes also on vitamins called adeks i mix it in her pediasure, she has her enzymes wich i open the capsules and put it in applesauce and spoon feed it 2 her before each meal or snack ( anything that has fat or protein in it) shes on a medicine called actigall for her liver , her liver enzymes have been high since she was 2 mnths old and the actigall keeps them down she also takes miralax 4 constipation since the rectal prolapse and an additionall vit k supplement. her 1 st yr was hard alot of hospital stays those i think by far r the hardest times 2 deal with but u get thru it . she was faILURE 2 THRIVE @ 9 mnths old she was on the 3 rd percentile my trick was pediasur instead of milk and boost pudding it comes in chocolate and vanilla she likes the chocolate they are tiny little 5 oz cans 240 calories and they taste good u can order them only @ your target pharmacy they come in packs of 4 its 5.99 for a 4 pack expensive but well worth it at first i gave to her in the am and nighttime snack , i had to cut the am pudding out because she was gaining to much now she just gets a nighttime pudding and she in the 50 th percentile for weight . this yr has been really good only 1 overnight hospital stay for a vit k defficiency and sinus issues, i have heard that there is a new breathing treatment out called hypertonic saline its based on a study done in australia but i think there 2 young for it but i plan on asking about it on her next visit w her lung dr wich she sees every 3 mnths 4 a visit and 2 have a throat culture. the vest is something else i wanted 2 ask her dr about because when she was little little treatments & cpt put her 2 sleep now that shes older she likes 2 fight me on it , i think its 2 yrs old though. im new to this website as well and i find it very helpful i'v also read 2 books wich were very helpful 1st CYSTIC FIBROSIS everything you need to know by WAYNE KEPRON, MD FRCPC and 2nd is CYSTIC FIBROSIS THIRD EDITION A GUIDLINE FOR PATIENT AND FAMILY by DAVID M. ORENSTEIN i had the first one was a library book the 2nd i had 2 order from barnes and nobles iknow i wrote a novel here but i know what ypur going thru take it a day at a time hope this was of some help lots of luck

cf mom

daughter 9 yrs old w/o cf & baby girl 16 mnths w/ cf deltaf508

 

[superlogan]

Hi. I do have a story similar to yours. My son is 10mths old. When he was born he was put into the nicu for many reasons, but 5 day later (on my b-day) they released him with a clean bill of health. One month later he weighed less than he did when he was born, and the dr. didn't believe me when I told her he ate like a horse all day long. Test found him positive for cf. My family was in a total state of shock and confusion. We didn't have a clue what cf was, and it didn't run in the family which I have come to find out is most often the case. Logan is on creon 5 enzymes 2 caps with every feed, albuterol once a day unless he is sick in which case he goes to 3 a day, chest pt twice a day, and vitamins. When he gets a cold we call the cf dr. before the pediatrition so we can have them look at the last throat culture. That helps them decide what anitibiotics will help him the most. He tests positive for Staph every time. So far we have been doing pretty well. Like everyone says, all cases are different. He had tons of digestion problems for about 4 months. Every so often his nose gets really wheezy, and we up the albuterol which seems to help. He is in the 95th percentile for weight so no more problems there. We are still learning, and know there is lots more to come, but I think you just have to give them the most normal loving life that you can and enjoy what you have. That has been a hard lesson for me to learn the last couple of months and I still struggle. This site is great for questions, and even if you think it's dumb ask it anyway. There are no dumb questions here.

 

[superlogan]

Hi. I do have a story similar to yours. My son is 10mths old. When he was born he was put into the nicu for many reasons, but 5 day later (on my b-day) they released him with a clean bill of health. One month later he weighed less than he did when he was born, and the dr. didn't believe me when I told her he ate like a horse all day long. Test found him positive for cf. My family was in a total state of shock and confusion. We didn't have a clue what cf was, and it didn't run in the family which I have come to find out is most often the case. Logan is on creon 5 enzymes 2 caps with every feed, albuterol once a day unless he is sick in which case he goes to 3 a day, chest pt twice a day, and vitamins. When he gets a cold we call the cf dr. before the pediatrition so we can have them look at the last throat culture. That helps them decide what anitibiotics will help him the most. He tests positive for Staph every time. So far we have been doing pretty well. Like everyone says, all cases are different. He had tons of digestion problems for about 4 months. Every so often his nose gets really wheezy, and we up the albuterol which seems to help. He is in the 95th percentile for weight so no more problems there. We are still learning, and know there is lots more to come, but I think you just have to give them the most normal loving life that you can and enjoy what you have. That has been a hard lesson for me to learn the last couple of months and I still struggle. This site is great for questions, and even if you think it's dumb ask it anyway. There are no dumb questions here.

 

[superlogan]

Hi. I do have a story similar to yours. My son is 10mths old. When he was born he was put into the nicu for many reasons, but 5 day later (on my b-day) they released him with a clean bill of health. One month later he weighed less than he did when he was born, and the dr. didn't believe me when I told her he ate like a horse all day long. Test found him positive for cf. My family was in a total state of shock and confusion. We didn't have a clue what cf was, and it didn't run in the family which I have come to find out is most often the case. Logan is on creon 5 enzymes 2 caps with every feed, albuterol once a day unless he is sick in which case he goes to 3 a day, chest pt twice a day, and vitamins. When he gets a cold we call the cf dr. before the pediatrition so we can have them look at the last throat culture. That helps them decide what anitibiotics will help him the most. He tests positive for Staph every time. So far we have been doing pretty well. Like everyone says, all cases are different. He had tons of digestion problems for about 4 months. Every so often his nose gets really wheezy, and we up the albuterol which seems to help. He is in the 95th percentile for weight so no more problems there. We are still learning, and know there is lots more to come, but I think you just have to give them the most normal loving life that you can and enjoy what you have. That has been a hard lesson for me to learn the last couple of months and I still struggle. This site is great for questions, and even if you think it's dumb ask it anyway. There are no dumb questions here.

 

[ViviansMom]

Hi, I'm new to this site also but I know all to well the time, stress and love it takes to deal with a child with CF. I was perhaps the luckiest of all to find out that before my daughter was born that she was CF.

My daughter's father had a daughter with CF and I mention it to my OBGYN and he did DNA testing and I to was a carrier, then we had an amino at 14 weeks of my pregnancy and at 16 week we had the results indeed she was CF positive. I right away contacted the CF foundation and they sent me tons of literature and I also got in touch with her now CF doctor, and they to provided me with tons of educational literature. I thought I had all the answers but I have found with CF that you can never know enough. In the hospital where my daughter was born her CF doctor was present and took charge of her right away. Her very first meal was laced with pancreas enzymes. We went home from the hospital doing P T, your doctor should have the soft rubber PT cups to start you off. As far as the vest it is the most wonderful item that a CF patient can have ,they are not normally give by age rather their chest size . They have to be a certain size before they can start it, some doctors will kind of pad the size for you by using a thick shirt to increase chest size

Vivian's respiratory problems did not start till she was around 9 mouths old, you are never prepared for it when it does happen.

As time goes by their med's increase and antibiotics will be one that you are never without.

Some tips is to never never allow smoking around your child, don't visit homes that have smokers rather they are family or not smoke remains even after the cigaret has been put out, And a clean heating source it best . Check out side your home for standing waters (in containers or ponds) they holds bacteria that are very harmful and will cause lung infections. Allow your child to eat what ever when ever they want a good weight gain equals good lung functions. Pets are looked down on in the CF world but we have a small dog that my daughter adores. Mold is another thing to watch for and avoid.

Good Luck and feel free to ask me anything you like.
Carol
aka Vivian's Mom

 

[ViviansMom]

Hi, I'm new to this site also but I know all to well the time, stress and love it takes to deal with a child with CF. I was perhaps the luckiest of all to find out that before my daughter was born that she was CF.

My daughter's father had a daughter with CF and I mention it to my OBGYN and he did DNA testing and I to was a carrier, then we had an amino at 14 weeks of my pregnancy and at 16 week we had the results indeed she was CF positive. I right away contacted the CF foundation and they sent me tons of literature and I also got in touch with her now CF doctor, and they to provided me with tons of educational literature. I thought I had all the answers but I have found with CF that you can never know enough. In the hospital where my daughter was born her CF doctor was present and took charge of her right away. Her very first meal was laced with pancreas enzymes. We went home from the hospital doing P T, your doctor should have the soft rubber PT cups to start you off. As far as the vest it is the most wonderful item that a CF patient can have ,they are not normally give by age rather their chest size . They have to be a certain size before they can start it, some doctors will kind of pad the size for you by using a thick shirt to increase chest size

Vivian's respiratory problems did not start till she was around 9 mouths old, you are never prepared for it when it does happen.

As time goes by their med's increase and antibiotics will be one that you are never without.

Some tips is to never never allow smoking around your child, don't visit homes that have smokers rather they are family or not smoke remains even after the cigaret has been put out, And a clean heating source it best . Check out side your home for standing waters (in containers or ponds) they holds bacteria that are very harmful and will cause lung infections. Allow your child to eat what ever when ever they want a good weight gain equals good lung functions. Pets are looked down on in the CF world but we have a small dog that my daughter adores. Mold is another thing to watch for and avoid.

Good Luck and feel free to ask me anything you like.
Carol
aka Vivian's Mom