some questions

[lucysmomma]

Thank you all for your help! I will be SURE to ask about her number specifically. I am not sure why she would have so many mecomium stools but from everything I have read and from searching the forums here I have not heard ANYTHING other than about a mecomium blockage. So hopefully we are in the clear. Her symptoms really dont conincide with CF. The only time she has ever had diarrhea is when she was being exposed to milk/soy (even trace amounts), the only symptoms that she still has are the cough (which is quite nasty but can be attributed to reflux or allergies, and the fact she was hospitalized for RSV which is common anyway!

I am starting to feel better and keep chanting to myself that whatever it is-CF or not- we can handle it. Just when you read the statistics on CF it feels like a death sentence. The numbers are scary.

 

[clawson5104]

when my son was born he was covered in his first BM. he didn't have a blockage. but had slight jaundice. not bad though. he has always had problems with bm's though. he can go and go and go, sometimes bulky, sometimes runny, then not have any for 3-4 days no matter how hard he tries. he always had coughs and runny nose, no rsv, but pneumonia and early pneumonia, hospitalized twice for. then asthma, until i pushed my pediatrician to understand i knew something was not right, this was my 4th child and the only one i was nervous over, and something was not right, he caved and started referring him to specialists. that's really all i can say ......my son is newly diagnosed, with only one mutation and mild symptoms for cf. in fact, is still going thru lots of testing, and new dr.'s. I truly hope for the best for your daughter, but as i have found this disease is not "typical", every patient is different. although there are common symptoms, they alone can be different for everyone. my pediatrician would have NEVER expected CF to really be wade's problem. he always assumed it was asthma and all the other issues, he would probably outgrow. good thing i'm persistent. i think he is in more shock than i am...lol.

i felt the same way, and even more so my hubby about the statistics and CF being a death sentence. but it's really not, it's what you make it,, prevent as much as u can, treat what you cant prevent, and keep on praying. and be thankful, it could be worse, in my opinion, i would much rather see my son with CF, than some type of cancer, or something that would cause him to deteriorate with no way of treating him, not being able to move or smile, or even cry. i know cf is very serious, and can be really severe for some patients, but they can do so much now they couldn't 30 yrs ago. living longer, healthier lives. years ago, they were lucky to reach 5 or 10. so i try to be thankful.

sorry this is so long, take care and good luck!!!

 

[clawson5104]

when my son was born he was covered in his first BM. he didn't have a blockage. but had slight jaundice. not bad though. he has always had problems with bm's though. he can go and go and go, sometimes bulky, sometimes runny, then not have any for 3-4 days no matter how hard he tries. he always had coughs and runny nose, no rsv, but pneumonia and early pneumonia, hospitalized twice for. then asthma, until i pushed my pediatrician to understand i knew something was not right, this was my 4th child and the only one i was nervous over, and something was not right, he caved and started referring him to specialists. that's really all i can say ......my son is newly diagnosed, with only one mutation and mild symptoms for cf. in fact, is still going thru lots of testing, and new dr.'s. I truly hope for the best for your daughter, but as i have found this disease is not "typical", every patient is different. although there are common symptoms, they alone can be different for everyone. my pediatrician would have NEVER expected CF to really be wade's problem. he always assumed it was asthma and all the other issues, he would probably outgrow. good thing i'm persistent. i think he is in more shock than i am...lol.

i felt the same way, and even more so my hubby about the statistics and CF being a death sentence. but it's really not, it's what you make it,, prevent as much as u can, treat what you cant prevent, and keep on praying. and be thankful, it could be worse, in my opinion, i would much rather see my son with CF, than some type of cancer, or something that would cause him to deteriorate with no way of treating him, not being able to move or smile, or even cry. i know cf is very serious, and can be really severe for some patients, but they can do so much now they couldn't 30 yrs ago. living longer, healthier lives. years ago, they were lucky to reach 5 or 10. so i try to be thankful.

sorry this is so long, take care and good luck!!!

 

[clawson5104]

when my son was born he was covered in his first BM. he didn't have a blockage. but had slight jaundice. not bad though. he has always had problems with bm's though. he can go and go and go, sometimes bulky, sometimes runny, then not have any for 3-4 days no matter how hard he tries. he always had coughs and runny nose, no rsv, but pneumonia and early pneumonia, hospitalized twice for. then asthma, until i pushed my pediatrician to understand i knew something was not right, this was my 4th child and the only one i was nervous over, and something was not right, he caved and started referring him to specialists. that's really all i can say ......my son is newly diagnosed, with only one mutation and mild symptoms for cf. in fact, is still going thru lots of testing, and new dr.'s. I truly hope for the best for your daughter, but as i have found this disease is not "typical", every patient is different. although there are common symptoms, they alone can be different for everyone. my pediatrician would have NEVER expected CF to really be wade's problem. he always assumed it was asthma and all the other issues, he would probably outgrow. good thing i'm persistent. i think he is in more shock than i am...lol.

i felt the same way, and even more so my hubby about the statistics and CF being a death sentence. but it's really not, it's what you make it,, prevent as much as u can, treat what you cant prevent, and keep on praying. and be thankful, it could be worse, in my opinion, i would much rather see my son with CF, than some type of cancer, or something that would cause him to deteriorate with no way of treating him, not being able to move or smile, or even cry. i know cf is very serious, and can be really severe for some patients, but they can do so much now they couldn't 30 yrs ago. living longer, healthier lives. years ago, they were lucky to reach 5 or 10. so i try to be thankful.

sorry this is so long, take care and good luck!!!

 

[lucysmomma]

thank you! i know i need to put a different spin on this and see it as it could be worse. its just hard when you are sidelined- thinking all along that your child would live to be 80 and now suddenly you hear 30 is more likely. BUT i have decided to try to NOT think about it until the test. I cant do anything right now and sobbing into my baby's chest isnt going to help- I would probably have a nervous breakdown by the time of the test!
If she is positive i will definately be here- everyone has been so sincere and helpful.
Good Luck with your boy! Hes a cutie pie!

 

[lucysmomma]

thank you! i know i need to put a different spin on this and see it as it could be worse. its just hard when you are sidelined- thinking all along that your child would live to be 80 and now suddenly you hear 30 is more likely. BUT i have decided to try to NOT think about it until the test. I cant do anything right now and sobbing into my baby's chest isnt going to help- I would probably have a nervous breakdown by the time of the test!
If she is positive i will definately be here- everyone has been so sincere and helpful.
Good Luck with your boy! Hes a cutie pie!

 

[lucysmomma]

thank you! i know i need to put a different spin on this and see it as it could be worse. its just hard when you are sidelined- thinking all along that your child would live to be 80 and now suddenly you hear 30 is more likely. BUT i have decided to try to NOT think about it until the test. I cant do anything right now and sobbing into my baby's chest isnt going to help- I would probably have a nervous breakdown by the time of the test!
If she is positive i will definately be here- everyone has been so sincere and helpful.
Good Luck with your boy! Hes a cutie pie!