My baby was just diagnosed with CF yesterday. She is only 7 weeks old and not presenting any symptoms. I am still in shock from hearing the news and my family is devistated. I have no idea what to expect because my daughters second mutation has yet to be found (the dr. told us this would determine the severity of the disease). I was hoping to meet someone in a similar situation that understands what I'm going through and can give me some insight. I am trying to cope with this, but the unknown is a scary thing. Please share your stories with me <img src="i/expressions/face-icon-small-smile.gif" border="0">
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Scared but Hopeful
- Thread starter ampetrie
- Start date
Maddox was diagonsed at 5 weeks. We and our families were devistated. For awhile I felt like someone had died, very sad. But, here's the good news. It gets better, at least it did for me. Once you get used to the treatments and you watch your baby grow and develop just like other kids do, the CF seems to be easier to handle. I believe that many people with CF are amazing & strong and the people who love them are too. Oddly, I feel lucky to be part of such a group. My advice is to just take it one day at a time. I'm sure you will have good days and bad days, but as time goes on there will be many more good than bad. And enjoy your 7 week old - it won't be long until she is running around pulling pots and pans out of cupboards and really keeping you on your toes. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Take care
DietRootBeer
New member
Welcome to this site!
I am sure you are overwhelmed right now but once you have time to absorb everything it will get better. The disease is here to stay right? So soon enough the meds+ physio+ appointments will just be a part of your daily routine. It is important to look for the different complications regarding CF but only as a guide to what can happen and being informed is best. It is a wild card disease meaning you cannot predict every corner but with time it will get easier. Ask any questions...It isi OK to be upset right now, it is normal. After dealing with the original diagnosis you have to pick yourself up off the floor and do what is best for your child: Good nutrition, healthcare, and unconditional love. Cfers are the coolest people on the planet...Feel free to PM me with any questions.
Mummy of 2 boys
RN in training
I am sure you are overwhelmed right now but once you have time to absorb everything it will get better. The disease is here to stay right? So soon enough the meds+ physio+ appointments will just be a part of your daily routine. It is important to look for the different complications regarding CF but only as a guide to what can happen and being informed is best. It is a wild card disease meaning you cannot predict every corner but with time it will get easier. Ask any questions...It isi OK to be upset right now, it is normal. After dealing with the original diagnosis you have to pick yourself up off the floor and do what is best for your child: Good nutrition, healthcare, and unconditional love. Cfers are the coolest people on the planet...Feel free to PM me with any questions.
Mummy of 2 boys
RN in training
irishdavid
New member
I can't claim to know what you are going through as I am not a parent but I will say that you have come to the right place to find support as there are many on this site who have gone through what you are going through now and will be able to help you when times are difficult.
I mainly wanted to post to say that for the Dr. to suggest that the severity of your babies CF would be determined by what her second mutation turns out to be is ridiculous. You will find lots of people on this site with varying combinations of mutations and you will soon discover that a combination of medical treatment, attitude and chance have as much of an effect on future of any individual as their particular combination of mutations.
I say this not to worry you further, but to point out that the fate of your baby is not entirely sealed by her genetics and that only time will reveal how CF will effect her health.
I realise that this may not be what you want to hear, but I felt it was important to say so because I would hate to think that you might be told by your Dr. that your daughter has a particular severity of CF which might result in a particular attitude toward her health one way or another.
I mainly wanted to post to say that for the Dr. to suggest that the severity of your babies CF would be determined by what her second mutation turns out to be is ridiculous. You will find lots of people on this site with varying combinations of mutations and you will soon discover that a combination of medical treatment, attitude and chance have as much of an effect on future of any individual as their particular combination of mutations.
I say this not to worry you further, but to point out that the fate of your baby is not entirely sealed by her genetics and that only time will reveal how CF will effect her health.
I realise that this may not be what you want to hear, but I felt it was important to say so because I would hate to think that you might be told by your Dr. that your daughter has a particular severity of CF which might result in a particular attitude toward her health one way or another.
amp,
I know it is terrifying, but as some have already said.......it does get better.
My daughter, Courtney was diagnosed at the age of 10. She is now 13. We only know one of her mutations. She is DF508 and one unknown.
This site will help you a great deal. It is nice to talk to CFers and relatives of CFers, and get many different view points.
You and your family are in my thoughts.
Seana
I know it is terrifying, but as some have already said.......it does get better.
My daughter, Courtney was diagnosed at the age of 10. She is now 13. We only know one of her mutations. She is DF508 and one unknown.
This site will help you a great deal. It is nice to talk to CFers and relatives of CFers, and get many different view points.
You and your family are in my thoughts.
Seana
Welcome! I'm sorry to hear about your daughter...but, as everyone else has said...IT WILL GET BETTER! I was in your shoes about 2 1/2 years ago. It seems like yesterday and at the same time...forever ago! I can remember the fear, the anger, the devastation, and the unknown...but, with time, it's just a part of life. If you would like to talk or have ANY questions and would like to email me personally, please do. Amanda_Roberts76@sbcglobal.net
Again, I'm so sorry to hear about your daughter's diagnosis, but I am glad you are here.
Here is our website...www.FightForEthan.com
Much Love,
Amanda (forgot to login)
Mommy to Kenzie (5 1/2, cf carrier) and Ethan (2 1/2, wcf)<img src="i/expressions/rose.gif" border="0">
Again, I'm so sorry to hear about your daughter's diagnosis, but I am glad you are here.
Here is our website...www.FightForEthan.com
Much Love,
Amanda (forgot to login)
Mommy to Kenzie (5 1/2, cf carrier) and Ethan (2 1/2, wcf)<img src="i/expressions/rose.gif" border="0">
thelizardqueen
New member
I can't claim to know what you are going through as a parent, but I do have CF. This must be a tough time for you, and I am sorry that you have to go through this. That being said, gene mutations only play a role in how severe your childs pancreatic deficiency is. It does not play a role in her lung function. I have two class two mutations, which means that I have two of the most severe genes. Not the most severe which is class 1, but I'm close to that. I have double delta f508, and I'm 24 years old with mild lung involvement. I take enzymes, and have some of the side affects of CF, but I've only ever been hospitalized for lung issues twice in my life. It may be hard for you right now, but you and your family will get used to this as best you can, and life will become normal and routine for you. Just know that because your daughter is so young, she has an excellent chance at getting a lot of the new meds and breakthroughs that science has come out with.
3timesthefun
New member
Welcome to the site. I am sure that right now you are completely overwhelmed. It is so scary when that news first comes. Once you've digested this devastating news, I'm sure you will have many questions, and this is the perfect place to find your answers. I am new here, but I wish I would have found this site when my kids were first diagnosed. I have triplets all with CF. One was diagnosed at birth, and the other two at three years of age. It took awhile for them to confirm the second gene on the two. It was done at Georgetown University. I will say that the one that was diagnosed at birth is much more affected at this point. The two with the less common gene are midly affected up to this point. Please don't hesitate to ask questions. Hang in there, and unfortunately the scary part is not knowing what to expect as each child is different.
Welcome to the forum! Addison is such a cute name.
There is no more I can add that others haven't said so well, but I wanted to let you know we're here for you. Getting that diagnosis was the worse day of my life and one I will NEVER forget. It might be a good idea for your family members to come here too, they will probably have lots of questions that you might not have the energy to answer.
My advice-enjoy every minute of your little girl<img src="i/expressions/face-icon-small-smile.gif" border="0">
There is no more I can add that others haven't said so well, but I wanted to let you know we're here for you. Getting that diagnosis was the worse day of my life and one I will NEVER forget. It might be a good idea for your family members to come here too, they will probably have lots of questions that you might not have the energy to answer.
My advice-enjoy every minute of your little girl<img src="i/expressions/face-icon-small-smile.gif" border="0">
CFHockeyMom
New member
Welcome to this site Addison's Mom.
There is a lot of good information here and a lot of support so I hope you stick around.
Yes, the first year is very trying but once you get into a routine things will be just fine. The initial diagnosis is very devistating and you'll need time to "mourn" and come to terms with the fact that you don't have a perfectly healthy child and that their life will be significantly different than others in some ways. The good news is that in many ways, your CFers life will be completely "normal" (if there is such a thing).
Take time to mourn but make sure you enjoy your baby.
All the information can be a little overwhelming at first so make sure you come to us with any questions.
There is a lot of good information here and a lot of support so I hope you stick around.
Yes, the first year is very trying but once you get into a routine things will be just fine. The initial diagnosis is very devistating and you'll need time to "mourn" and come to terms with the fact that you don't have a perfectly healthy child and that their life will be significantly different than others in some ways. The good news is that in many ways, your CFers life will be completely "normal" (if there is such a thing).
Take time to mourn but make sure you enjoy your baby.
All the information can be a little overwhelming at first so make sure you come to us with any questions.
First off let me say Welcome. I am sure you are overwhelmed at the moment so let me suggest you get a notebook of some sort & start writing down any concerns, questions, keep track of meds, bowl movements etc. This will come in handy as your child presents symptoms & you try to keep track of things. It will be something to refer to as you write down your ??? & then the answers or changes accordingly. It helps with the first few doctors appointments also. Once you get the hang of CF & what it entails things will fall into place a bit easier believe it or not. I wasnt dx until I was 7 so I think its easier (in some ways not so much for the parents) for babies to be dx because they grow up only knowing the treatments & not the lack of so resistance to doing them is usually less. I am not sure what you want to know. I was dx @ 7 after years of belly aches, diahrea etc. First few years of school was awful because of this. At that time my lungs werent really involved. FInallly after tons of allergy testing to no avail I was sent for the sweat test & we finally had a reason. We did learn the CPT & all the airways stuff etc, but because of the life expectancy then my Mom thought it best to just let me have fun & not make me do treatments. I did take my enzymes since that was an immediate problem if I didnt. So anyway here I am 30 years later having not did regular treatments my whole life & somewhat paying for that now. I had a normal life. I was in the school band, ran cross country (not a top finisher, but cant have it all), was in Girl Scouts, had boyfriends etc. Went to work & worked fulltime. I got married (twice) & had a beautiful baby girl who just turned 8. I did have to stop working when she was 18 months because I couldnt balance Motherhood, Marriage, Health & Fulltime work. Once again tho thats because I didnt have the discipline of my treatments etc. So I have been a stay at home Mom for 6 1/2 years now & have good/bad days, but overall I am doing great. I have been throwing the idea of going back to school around in my head, but honestly dont know if I want that committment. Maybe I will just take a class instead of actually majoring in something.....we will see! As your ??? or concerns arise, please be sure to come here & address them!
Thank you everyone for your support <img src="i/expressions/face-icon-small-smile.gif" border="0"> Its been a few days more and I am just beginning to get used to the idea that I have a CFer. I'm also beginning to see that its not the end of the world and my baby will be OK. It means so much to me to have so many caring ppl out there. Thanks again guys <img src="i/expressions/face-icon-small-smile.gif" border="0">