Where do I turn??

[Kenzosmom]

Infant diagnosed, Now where do I turn?

Hi everyone. At about 3 weeks my now 2 month old son was diagnosed. (Df508 3120+1G>A) My baby was born healthy-no problems at birth, almost 9lbs. As shocked and in denial as I was, of course, my entire world came crumbling down as I read horrific stories online and tried to educate myself on CF. 2 days after being diagnosed I met with my sons pulmonologist &then the team at the CF clinic. Although my son has no symptoms yet, his doctor put him on enzymes and Albuterol treatments (followed by cpt) daily. So far, my baby is doing great. He's almost 3 months and weighs right under 14lbs, he's a very happy infant. However, me on the other hand...not so great. I am coping the best way possible and I come to this site and read encouraging and inspiring things, it's just that not knowing how my sons health will turn out scares me to death. I am 22 years old and me having a baby not only changed my life dramatically but also (I believe) saved it. I will do everything and my absolute best to make sure my son is as healthy and happy as can be. I'm just so worried sometimes, I want him to be okay. Every time he coughs, I get nervous. Every time he has excessive gas, I get nervous. Every time he spits up, I'm nervous thinking that it's his CF starting to act up. When in reality, those are normal things that all babies do! Hardly any friends or family know of my sons disease...I don't want anyone treating him different or "sick" and I definitely don't want sorrow or pity. However, I'm thankful that I can turn here and hopefully be understood. Sometimes, I just feel so lost like I have no one to talk to that understands what I'm going thru. Responses on advice or any comments are greatly appreciated. Also, anyone with the same gene mutations?? Thanks everyone!

 

[sweetninis]

Hi I m 25 and have a daughter with CF you can ask anything u want feel free!

 

[Ratatosk]

When DS was diagnosed, his doctor warned us not to read things on the internet or in the hospital library. Lots of outdated information. We pretty much focused on cpt, enzymes -- taking one thing at a time and getting into a routine. We had similar concerns about DS being treated differently, being considered the sickly child. We did stress to everyone who wanted to hold the baby that they wash their hands. IMO, It is important for family to know, as we didn't want people showing up to family events (holiday) sick. I'd get nervous if ds got a cold, fever, acted out of sorts. That first year he had a couple ear infections, a stomach bug, a few colds -- they ARE going to get sick, they are going to get normal childhood illnesses. It's just important to make sure it doesn't turn into something worse. When DS would get a cold, we'd increase CPT to "beat that cold out of him". Little by little you'll get a bit more confident. Once you get thru that first cold, fever or ear infection...

 

[aannddd]

It has been almost 7 years since I was in your shoes, 26 and shocked to find out my newborn had CF. Fast forward almost 7 years and we just survived our first clean-out this month. There will be sad days, but there will be far more days with joy. My son is happy and well adjusted. He is a pretty typical six year old, who plays soccer, baseball, and just won the math award at school. Ask any questions you need to. You will always find a group of people happy to listen and help.

 

[Dowling]

Sent u a private message

 

[John O]

Hi Kenzosmom,

I know its going to be really rough at first but I PROMISE it does get better. As far as your son's gene mutations......He has the 3120+1G>A which is what is called a residual functioning gene. He may produce a negative sweat test, and also be pancreatic sufficient. Also if you have a residual gene you are "considered" to also have mild CF. But no two people with the same two exact gene mutations have the same CF. But his gene is being studied in a clinical trial in Denver. The study is using Kalydeco by Vertex. Have you heard of Kalydeco? It is basically the magical pill out there for CFers where this pill treates CF at the cell level. It is the closest thing to a cure right now. So there is so much hope out there don't think negatively. But I would like to leave you with this that I tell all new diagnosed parents. I hope this helps you and I would love to answer any questions you may have. Check out my blog to see me kicking CF butt every day as well
Here is my two cents that I tell all newly diagnosed parents with a CFer…

I assume you feel overwhelmed as CF is very new to a lot of parents when
their child gets diagnosed. 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.

I also want you to understand that putting your son's health first is the
main priority right now. You are setting the FOUNDATION for your son 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 his health in the years to come. He will thank you
not right away but when he is older and can understand how much of a POSITIVE
influence you have been in her life.

But you have to also remember he is a “normal” baby/child. He will go to
school, he will have a bunch of friends, he will be just as active as any other
child who doesn’t have a disease. Your son will view CF as you view CF. If you
paint CF as a dark and scary picture he will as well. You have to try and show
him that CF is a part of his life and your life but paint a picture that things
will be ok and he will follow this lead as well. Whatever happens you will face
it as a family and you can tackle it. Just remember enjoy every moment with your
young son because they are so precious!!

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 son with
the better you will feel about this disease. You will find that the people who
truly care about you and your son 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. Oh and I am 28 years old kicking butt with
this disease everyday.

So what I want you to do is see this disease as something that will shape
your son into a STRONGER person as well as you as mother. He will go on to
achieve many things in life just like every one else. He 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!!

If you ever have any questions on this disease please message me through the
site.

Here is my blog about me kicking CF butt everyday. Feel free to read

http://livingmydreamswithcf.blogspot.com/

John CF fibro 28 years old.

 

[Kenzosmom]

Thanks everyone for your encouraging responses...it's great to know that im not alone &that other people and parents have gone thru the same exact thing I'm going thru. I know there are many better days to come. My little guy is the best and cf will NOT get the best of him. Good luck and God bless you all!

 

[LittleLab4CF]

John O,

Hey, sorry I noticed you had some thumb downs. I fear I might be one in error. I gave you what I expected to add one thumb's up but on my mobile it appeared down. You had a great post and worthy of several 'at a boys and maybe that feature isn't as reliable as we expect. A love for life such as yours needs to be heard and appreciated.

LL

 

[running4life]

When I was born 26 years ago, they told my mom I would probably be dead by age 18-25. Here I am today, living a happy and full life. I have learned so much through this disease and am thankful God has chosen me worthy of this tribulation. The amount of self-control, discipline, and perseverance in my life wouldn't be possible without this disease. I've needed all those things to get through all the other struggles I've faced and overcome.

You are going to be okay, your baby is going to be okay. This is not a death sentence and this doesn't define you or him. It's a part of your lives, it's not your life. He can still live a full, happy life - if not MORE happy than most because he won't let the small things upset him. CF puts life into perspective. I don't complain like most people do. I see life with an open heart and mind and don't sweat the small stuff. You realize what a beautiful gift life truly is. You learn to cherish the good things.

Take care of your son, but don't let it run your life. I'm 26, 86% lung function, and healthy and happy. Take in stride, breathe, it's going to be okay.

 

[Beccamom]

Congratulations on your baby. I'm 37 and wasn't diagnosed with CF until 35 and then only because my kids were being tested. I'm relatively healthy, married, have 2 kids, a master degree and I'm living life to its fullest. There are many people on here older then me.

As for your ups and downs that just means you are a great mom who loves your baby. I recommend you google a poem called Welcome to Holand.
This aplies to parents of children wit special needs being educational or medical needs. Basically you have a baby expecting it to be the perfect trip to Paris. The trip you always dreamed of, but instead your flight has landed in Holland. At firstyou are mad and sad that you didn't land in Paris as planned. Then you realise Holland is different, but just as wonderful. Keeping in mind that mourning the loss of the life with your son you expected gtiven a medical diagnosis of CF, it takes about a year for most people to mourn the change. However, this is a gradual process and you just keep handling things better.

In the end enjoy your baby. They grow up so fast.

Thanks everyone for your encouraging responses...it's great to know that im not alone &that other people and parents have gone thru the same exact thing I'm going thru. I know there are many better days to come. My little guy is the best and cf will NOT get the best of him. Good luck and God bless you all!

 

[Marina Louise Oneill]

If you ever need to talk to someone im here my daughter has the df508 and the rh117 she had a failure thrive when she was 3 months old even though she was 9 lbs 1.5 oz. When i first found out i was devastated how am i going to cope with this. I hate the fact my daughter has cf. She is now 18 months old and thriving except for having strep throat right now. Here's my number if you ever want to talk 4843648391
Mother to Savannah w/ df508 and the rh117

 

[MotherofCFBoy11yrs]

Hi Kenzosmom, I think the only way you can stop feeling nervous about your son's health is to make sure that the doctors in charge of your son really know what they are doing. Properly treated, CF is not progressive so your son can stay essentially as healthy as he is today - I think that's pretty reassuring! I remember being told that nearly 12 years ago now and it totally changed how I felt about CF. However, very often CF is not treated adequately. You need to find a doctor who focuses on the bacteria in your son's airways (gets samples and has them checked in the lab) and has absolute zero tolerance for any infection, even if it's not symptomatic, so the cycle of infection and inflammation will not get a chance to start. If you are lucky, your son's lung specialist may follow this strategy. If not, you need to find one, and it may not be easy.