Aboveallislove
Super Moderator
Oh and most importantly...congrats on your precious baby!
Frightened and sad...
- Thread starter AllthebestforLiam
- Start date
Congrats on your new baby! I'm so glad he's doing well! I have a similar story, so I know how worried you probaby were and wish I would have seen this post sooner. I found out very early in my pregnancy that our daughter would have CF. My doctor tested me for the mutation and when it came back tested my husband also and I then chose to get a CVS thinking that she most definitely wouldnt have it and I could stop worrying, but she got both of our mutations. Most doctors scared me to death, one even made it sound like he thought abortion was my best option. My ob connected me with a cf team through Childrens hospital in Detroit, MI and they made me feel so much better. Our daughter just turned 1 in May and is so amazing. We are so blessed and she has yet to have any major problems. We have been doing chest therapy since she was just a couple months old and breathing treatments for about 6 months, but she is growing fantastic! There are so many treatments for cf now. I do believe with an elevated IRT he could be just a carrier because when I recieved my daughters newborn screen results it said hers was elevated but it could mean she was just a carrier, of course we knew already she had it, but she then had a sweat test and genetic testing to verify there wasnt any mistakes. I know there are many support groups, if you ask your sons specialist he can probably point you in the right direction if you want to talk to other parents outside of the internet. Good Luck and keep in touch!
AllthebestforLiam
New member
Hello again,
The genetics result came back today and Liam does have CF. His pancreas elastase is only 17, so we started enzymes yesterday. We are very sad. We can't really believe this cute little man has such a severe disease... Right now we're hoping it won't be all that bad..
The genetics result came back today and Liam does have CF. His pancreas elastase is only 17, so we started enzymes yesterday. We are very sad. We can't really believe this cute little man has such a severe disease... Right now we're hoping it won't be all that bad..
Aboveallislove
Super Moderator
Sending you hugs. What are the mutations. Lots of meds to fix in trials and I can update based on mutations
I know you already know this but what a true blessing you have!! Your little man will grow and be fine. Our CF kids are so strong and they in turn make us strong too. He will have lots of treatments to keep him healthy but he will still be your typical little miracle running around spreading joy!! It took us about a year to come to grips with it and find the right groove for our routines but we also didn't start until Abby was 2. I think if we had known since birth it may have been easier on me. I hope you can find some peace and comfort from others. I love my CF friends and family so much. It makes it easier talking to someone who knows a little of what you are going through.
Hello again and congrats! Yes, the elevated IRT is a signpost for CF, that's what they look for in the heel prick and how they decide to send those samples on for further testing. Our daughter has exactly the same gene combo, DF508 and R1162X and is very well. I know three women in America with the same genes and they have even said they have been told R1162X is a 'mild' gene. I know we shouldn't have expectations just because of genes, but out experience has been very positive. Freya had elastase less than 15! Very low! Even so, she takes a moderate dose of Creon, up to eight caps a day and her maximum would be 13. So low elastase is not something to dread. You will get into a rhythm with the Creon an not even notice you're doing it. While Liam is so tiny, do keep him away from anyone coughing or sneezing, and if people hold him, have them wash their hands and hand gel too. It's good to be careful when they are new. But don't worry, that doesn't last! Freya went to her first party with other kids last week, she had a ball and you would never know there is anything 'wrong' with her. I know it's so very hard at first but it does get better. You can always message me if you need anything. Congrats again! Xx
J
John O
Guest
Hi to all the CF moms on this string! I want to leave you all with a message. I am a 28 year old fibro myself. I am living my dreams out every day with my beautiful wife, and our miracle daughter who is 9 months. I also work full time outside the home. I have read the string here and I want you all to know that your children will do great things in their lifetime we were all given a chance to be great CF or not. As for me and my CF I have a "mild" case as well. My mutations are DF508 and 3849 10KB C>T. Nothing about this disease has stood in my way in creating my dreams a reality. I will leave you this post I leave all new moms it is from my blog as well. http://livingmydreamswithcf.blogspot.com/
Here is the post. Also please message me anytime. I will actually be messaging a few of you on here so look for me to send a message in your in box.
This message was written for a mom to a CF little girl but you can interchange it with a little boy as well......You all have a special place in my heart all your CF parents out there stay strong!!
Hi
momma!
CONGRATULATIONS on that little baby girl!!
I think the feelings that you are dealing with are very normal when it comes to
newly diagnosed CF parents. I assume you have never heard the two letters “CF”?
Most parents of newly diagnosed children have never ever heard those two
letters. This can be scary but the world of CF that we live in doesn’t have to
be that way at all.
Let
me ask you did you Google CF like any other person would? I assume you found a
bunch of negative information about how awful this disease is and how
devastating it can be. The key here is yes it can be this and it can be that but
it really doesn’t have to be all that bad and negative.
The
world is full of ignorant people and not just to CF so always keep that in the
back of your mind. Most people have never even heard of CF and they make
assumptions of what is. I was once told oh is CF that disease that impacts your
muscles and nerves? Uhm no that is a totally different disease. So what did I do
I started to educate this person on CF. This really allowed me to share my
disease and the person that it has made me become.
But
when these people come along who are being ignorant it is your opportunity to
educate them about CF. WE need to take advantage of these opportunities to
spread awareness and put the correct information out there to the public. Try to
put a POSITIVE spin on this disease. Tell them how amazing your daughter truly
is and how this disease has shaped you and her for the better. The more people
who know about CF and have a general idea of what CF is, the better our world
will be for everyone with this disease.
I also want you to understand that putting your daughter’s health first is the main priority right now. You are setting the FOUNDATION for your daughter at an early age with this disease. Try to be as compliant as possible when it comes to airway clearance, taking all the medicines, and attending doctor appointments. This will pay dividends for her health in the years to come. She will thank you not right away but when she is older and can understand how much of a POSITIVE influence you have been in her life.
But
you have to also remember she is a “normal” child. She will go to school, she
will have a bunch of friends, she will be just as active as any other child who
doesn’t have a disease. Your daughter will view CF as you view CF. If you paint
CF as a dark and scary picture she will as well. You have to try and show her
that CF is a part of her life and your life but paint a picture that things will
be ok and she will follow this lead as well.
There
are so many POSITVE stories out there momma about people who are living out
their dreams with this disease. Those are the people you need to find in this
community. The more POSITIVE people you surround yourself and your daughter with
the better you will feel about this disease. You will find that the people who
truly care about you and your daughter will show the greatest support for you.
I
know many fibros and cysters who are living normal “healthy”lives with this
disease. I for one feel I am in that boat. I have had many dreams come true. I
have a loving wife, I have a little baby girl, I have graduated college, I have
a career, the list goes on and on. So what I want you to do is see this disease
as something that will shape your daughter into a STRONGER person. She will go
on to achieve many things in life just like every one else. She has the
potential to be GREAT just like every one else does every time they get out of
bed in the morning! CF will never define who we are. WE define who we are!!
Here is the post. Also please message me anytime. I will actually be messaging a few of you on here so look for me to send a message in your in box.
This message was written for a mom to a CF little girl but you can interchange it with a little boy as well......You all have a special place in my heart all your CF parents out there stay strong!!
Hi
momma!
CONGRATULATIONS on that little baby girl!!
I think the feelings that you are dealing with are very normal when it comes to
newly diagnosed CF parents. I assume you have never heard the two letters “CF”?
Most parents of newly diagnosed children have never ever heard those two
letters. This can be scary but the world of CF that we live in doesn’t have to
be that way at all.
Let
me ask you did you Google CF like any other person would? I assume you found a
bunch of negative information about how awful this disease is and how
devastating it can be. The key here is yes it can be this and it can be that but
it really doesn’t have to be all that bad and negative.
The
world is full of ignorant people and not just to CF so always keep that in the
back of your mind. Most people have never even heard of CF and they make
assumptions of what is. I was once told oh is CF that disease that impacts your
muscles and nerves? Uhm no that is a totally different disease. So what did I do
I started to educate this person on CF. This really allowed me to share my
disease and the person that it has made me become.
But
when these people come along who are being ignorant it is your opportunity to
educate them about CF. WE need to take advantage of these opportunities to
spread awareness and put the correct information out there to the public. Try to
put a POSITIVE spin on this disease. Tell them how amazing your daughter truly
is and how this disease has shaped you and her for the better. The more people
who know about CF and have a general idea of what CF is, the better our world
will be for everyone with this disease.
I also want you to understand that putting your daughter’s health first is the main priority right now. You are setting the FOUNDATION for your daughter at an early age with this disease. Try to be as compliant as possible when it comes to airway clearance, taking all the medicines, and attending doctor appointments. This will pay dividends for her health in the years to come. She will thank you not right away but when she is older and can understand how much of a POSITIVE influence you have been in her life.
But
you have to also remember she is a “normal” child. She will go to school, she
will have a bunch of friends, she will be just as active as any other child who
doesn’t have a disease. Your daughter will view CF as you view CF. If you paint
CF as a dark and scary picture she will as well. You have to try and show her
that CF is a part of her life and your life but paint a picture that things will
be ok and she will follow this lead as well.
There
are so many POSITVE stories out there momma about people who are living out
their dreams with this disease. Those are the people you need to find in this
community. The more POSITIVE people you surround yourself and your daughter with
the better you will feel about this disease. You will find that the people who
truly care about you and your daughter will show the greatest support for you.
I
know many fibros and cysters who are living normal “healthy”lives with this
disease. I for one feel I am in that boat. I have had many dreams come true. I
have a loving wife, I have a little baby girl, I have graduated college, I have
a career, the list goes on and on. So what I want you to do is see this disease
as something that will shape your daughter into a STRONGER person. She will go
on to achieve many things in life just like every one else. She has the
potential to be GREAT just like every one else does every time they get out of
bed in the morning! CF will never define who we are. WE define who we are!!