New to Thread, Newly Diagnosed

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KyTheSky

Guest
Hello All,

I am fairly new to this website and I'm glad I was able to stumble upon it. My wife and I just found out, on Halloween go figure, that my now one-month-old son has CF. As big as a shock that it was to us, we're not in the stage of learning everything we can about CF. So if anyone has any tips for us in this beginning stages, we'd much appreciate it. We don't know what gene he has, we just got him started on enzymes two days ago (thank goodness!).

This site has been a great help to us already, and we look forward to learning as much as we can about CF.

Thanks!
 
K

Kaethe108

Guest
Welcome to this site!
You will find great amount of information and many helpful people here! Pls feel free to ask any questions that may arise.
Most importantly you should be seeing a certified CF center.
And if you feel overwhelmed... Thats normal! But I promise: everything will get better!
Kaethe :)
 
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AleksandraKaczynska

New member
Hi,
we also had idea about cf when we found out.
First off all - if you found out by screaning only - then you propobly will have a meeting in a cf center.
There you will learn most for what you need to know at the moment.
Do not go alone. Take something down to take notes with questions and answeres.
wash hands and try to keep out of infections.
cf has as many faces as there are sick people
you have a wonderful new life in hands and enjoy him as much as you can.
no all cf-ers have to taake enzymes - but most - so I hope this was somehow chequed.
take it step by step - learn about the needs of your son and try not to think too much about what if... and what when...
and ask...ask... and expect ansewres that you can understand from your cf doctors!
 
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Aboveallislove

Super Moderator
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Printer

Active member
Let me repeat what others have said, your son MUST be seen at a CF CENTER by a CF SPECIALIST. Don't depend on your local Doctor and don't think that going to a CF Center is enough, see a CF Specialist.

Bill
 
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KyTheSky

Guest
Thank you all for the kinds words of support. He does have CF doctor (who is now also his ped's doctor as well), and we are fortunante enough to have a CF center close by. We look forward to looking CF in the eyes (not literally, relax) and beating it!
 
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Aboveallislove

Super Moderator
Just one more thought: If you don't know what gene he has yet, that leads me to believe it isn't df508 since that is the most common and likely pre-screened for, which could be "great" in the scheme of things because many of the other ones have some residual functioning CFTR and there is a new med called Kalydeco which, especially when started at a young age, is working "miracles." Post when you know his mutations. And also, there are several other correctors in the pipelines that are destined to fix df508 too if it does end up being that.
 
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Ratatosk

Administrator
Staff member
DS was diagnosed shortly after he was born. DH was afraid our son was going to be sickly, not have any friends, not have a normal life. I worried about everything -- that he was going to be sick and in and out of the hospital... I'm sure you and your wife are overwhelmed. We just took it one step at a time, got into a routine. Today DS is a normal 9 year old. Is active in sports, went to daycare/preschool, goes to regular school... We do vest/chest physiotherapy (CPT) to keep his lungs happy and healthy. Enzymes to help digest fat.

Feel free to ask any questions. Most of us have been there, done that!
 
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JENNYC

New member
I know I'm a little late but wanted to say Welcome!! My first year was a whirlwind of information and overwhelming at times, but it passes and you become a CF pro with the help of good friends on this website and personal experience :) My advice is make some friends on here, and visit often with the good news and the not so good. One day these friends will be a blessing even if you have a wonderful support group at home. One day you will want to talk to someone who understands what it is like to be a parent to a child with CF. That's what I have learned. I have a huge wonderful support group but sometimes you just need to talk to someone who is walking in your shoes or has walked in your shoes. These guys on here are amazing!!! And you have an amazing adventure ahead of you!! Congratulations on your new blessing!!! Kids have to be the best thing ever no matter what!!! And if you have any questions post post post, someone will more than likely will be able to give you some support. Welcome to the group and good luck with your precious bundle!!!
 
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healthypeanut

New member
Just wanted to say a quick hello. I have a seven month old with CF DDf508 and found out 10 days after she was born. My baby girl gets 1/2 zenpep pill at every other meal (I put it in her food - applesauce, pears, etc), vitamax in the morning, and PT once a day. I like Vitamax better than aquadeks - the aquadeks is messy and my little one was spitting it out every time we gave it to her. gross!

She is a very happy and strong baby - currently enjoys standing on her own for a few seconds and has mastered rolling over both ways. She also babbles quite a bit, mostly dadada and lalalala but I hope that mamama will be coming soon!

CF can be a devastating diagnosis. It is your job to do the best that you can for your baby. Ask questions, be calm, use your brain, your heart, and your gut and you will be fine.


Also don't feel the need to tell everyone, it's nobody's business. The early care is hard because in addition to typical new baby stuff you have the cf stuff on top of it!

Don't be afraid to cry - its normal.

It gets better. Just take it all one day at a time. Try not to read all of the scary stuff on the internet. Any questions, please feel free to message me privately.
 
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LisaGreene

New member
Welcome and so glad you found this group. There's alot to learn... Ignore the scary stuff you might read out there, there is so much hope for our kiddos and especially for babies. There are some very promising treatments coming that will continue to make a big difference. Our children are now 14 (boy) and 12 (girl) and are doing well. We certainly have our challenges but they are manageable. The kids are happy and active. They do great in school, play sports, and involved in scouts (my son is almost an Eagle Scout). Live and love life and your child will, too.

Here's a link to my site with some great resources (I am a writer) for newly diagnosed families- scroll down for the newly diagnosed link. I am also a parenting educator by profession so there is alot of info about how to parent kids with cf. Hugs and Hope!

www.TipsForCFParents.com

PS: It's okay to be sad and mad!! It took me a year to "adjust" to our new normal. A wonderful book that really helped me was "Changed by a Child" by Barbara Gill.
 
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sierradavis

New member
My daughter has DDF508 and I found out through an amnio while I was pregnant. Our CF center and this website have been awesome at learning everything and getting support. I can't really give you too much advice because my daughter is only 2 weeks old. But I am definitely here for you if you need anything, our kids are around the same age! Knowing she had CF when she was born she started enzymes right away. It was amazing to me to see her eat enzymes and applesauce off a spoon at 2 days old. She does so well with them. She also takes Poly D bc I breastfeed and Vitamax. At one month old she will start the breathing treatments and the CPT. It's alot to take in especially with just having a baby so if you ever need someone to talk to we are here for you!
 
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LittleLab4CF

Super Moderator
It’s good to meet you, just wish it were better circumstances….. This is far and above one of the best forums for CF. I emphasize the ‘forum’ bit as this site generally functions as such with a rich knowledge base from people who like you have become unwilling authorities on everything from dealing with the genetic disorder to the occasional neurotic parent at wits end. Before people start getting their hackles up over neurotic parents, I get it, a neuroses over the most precious thing on earth being tortured to death is a fully justified neurosis, you’ve earned it, it is your neurosis and for heaven’s sake if it gets you through another day go for it. The point is, there is a support for those over the top times. Printer may inflame you even more in an attempt to lance that mental fistula. Others will cry with and for your doubting moments.
After reading the previous posts, you have heard from some of the best. CF is a rare disease and even rarer are CF specialists that are in vetted CF Centers. I don’t know where you are located but in the process of boning up on CF, bone up on who best can treat your child. CF treatment has gotten so much better in recent years and comprehensive treatment requires nearly every specialty in the book. All these different specialists all have to be on the same CF page in that they need to know everything CF. Over the last several months I have been seeing a doctor for a non CF problem although understanding the extent CF holds sway over a person’s life was important. Armed just enough to think he understood how a 62 year old man with CF could still be alive, I gave in and explained the short version of CF genetics. After explaining how a homozygous DDF508 can be anything from a still birth to a person living semi-normal, he fed back that he was hearing my particular mutations aren’t as severe as some others and hence I am alive still? You get it.
The short of genetics, for the near term put this to bed. Unless your child is a candidate for Kaleydeco and so on, just make certain you have the right doctors, is well nourished with emphasis on adequate uptake of fat soluble vitamins and don’t give any extra quarter.
 
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CrisDopher

New member
I have to reinforce what LittleLab4CF said: forget the genetics. UNTIL and UNLESS a Vertex drug is produced that works on YOUR mutation(s), knowing your mutations is a zero-sum piece of trivia. It will NOT determine your lifespan, NOT determine the course of your disease. Only you can determine that and only through adherance to the prescribed therapies. They are proven to extend CF lifespans. And those therapies apply to everybody with CF regardless of what their mutations are.
 
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