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|Posted By : my lil flipper - 1/9/2010 11:54 AM|
I am new to the board. My husband and I just received a prenatal diagnosis for CF. My husband has the DF508 mutation and I have the R347P mutation. We have an appointment with a pediatric pulmonologist next week. I have researched all of the CF sites and read all the "basic" information about the disease. I know there are different severities and I know the websites don't give even a clue to what we can expect on a daily basis.
If any of you would be so kind as to share your story with us, it would be so greatly appreciated. It would be so helpful to know the severity of your child's case first but then what you go through each day with regard to meds, treatments, drs/specialists, etc. Even things like challenges with school (in the future) or travel or just going out for the day to run errands...how bad is it really?? Please don't fear being very honest. We want to know what to expect...how to prepare our 8 yr old son...how to prepare ourselves for anything or everything.
THANK YOU in advance.
|Posted By : stkitt - 1/11/2010 12:00 PM|
|Hello and welcome to HealingWell. I am Kitt and I just stopped in to welcome you.|
I am sure you will be hearing from members of this forum soon. I am so glad your found us. Our dear Moderator for this forum is moving and offline for a bit so should you need something feel free to let one of the Moderators know.
Again a warm welcome.
|Posted By : purpleribbonmom - 1/13/2010 8:12 PM|
|Hello, Lil flipper! First, let me say "I'm sorry" that you guys have received a CF diagnosis for your baby.
My daughter is now 28months, she was dx'd when she was 6 weeks old. I'm older mom, so we did a bunch of prenatal testing...there is no family hx of CF, so we decided not to test for that.
As said before, all CFers are not the same. Severity depends on LOTS of factors. I know its easy to wanna plan on "the worst", but, I have found that we just need to keep a "wait and see" attitude. We try not to anticipate bad things, or things that haven't happened yet. For example, Kate's liver tests were a little off, and right away I spazed out and was thinking liver transplant!!! The what iffing will drive you crazy!!
Kate's 1st 6 weeks were hard. She was hungry all the time, nursed well, but then would cry for hours after eating. Her poops were stinky, green and mucousy. The CF test on her newborn screeing test came back high, but the doc told us she was just a carrier and not to worry. He also said she had colic and maybe a milk allergy. After I talked to him, I licked her forehead and she tasted salty, so I knew she had CF. Well, one day, she cried for hours and refused to eat. We were seen, sent to the CF clinic
and ended up having the blood/DNA analysis, which was +. We started her on enzymes at 6 weeks. Once she had those, she was a whole different baby! I cried the first time b/c it was the first enjoyable feeding we'd had. Anyway, she is now happy, healthy and doing well. She has the deltaF508 and a 4218insT combo mutation. Who knows what s/s this combo will produce in her future?
Anyway, living with CF does suck, but ya deal with it, and do everything you can to keep your kid healthy. We do Zantac for her reflux and to help the enzymes work more effectively, we do enzymes with every meal,snack, glass of milk, etc. We do the special CF vitamins. I give her the liquid meds thru an oral syringe. The enzyme capsules I break open and mix them with baby pears (she liked pears better than applesauce). When she was a baby, we did the nebulizer 2x day, and the chest percussion. Kate doesn't have any resp symptoms at this time, but she did culture Pseudomonas @ 18months and is now chronic. We now have the vest that vibrates her. I also use do other supplements orally and inhaled (via neb).
I use GSH, not b/c I think its a cure, but b/c it helps the immune system. Research things, don't be afraid to ask questions, trust your mom instincts, and realize that docs don't know everything. Also, allow yourself time to cry, be devastated, be mad, whatever. I still have bad days over Kate's CF.
We have just incorporated enzymes, treatments, etc. into our daily routine. I carry enzymes and pears in the diaper bag. I have given enzymes EVERYWHERE!! (the mall, amusement parks, library,in the car...) We have a portable neb and have done nebs lots of places. I don't let CF keep us captive in our house.
People have asked me "if you knew Kate had CF, would you still have had her?" I don't know.....but I do know that she is the greatest little person. Even at this young age, she has a spirit and spunk that keeps ME going. As a parent, CF has made me appreciate my daughter more.
So, good luck in your search. Sorry this is so long. Keep us posted!
mom of great Kate, w/ CF
|Posted By : purpleribbonmom - 1/21/2010 8:59 PM|
|Lil' flipper....hope things are going okay. One other thing I thought about....when we first had Kate to the pediatrician, prior to our CF clinic visit, the peds. told me to stop breastfeeding. He said that he "didn't know if the CF clinic would want me to continue, and to switch to formula b/c we'd know how much she was getting". Thankfully, I did research after that visit, and talked to the lactation consultant, and breastfeeding IS really good for CF kids. So, I did continue and I'm glad I did. I don't know what your feeding plans are, but if nursing is what you want to do, and it goes well, don't let them stop you. |
It was kind of a pain to have to get up in the middle of the night and give enzymes....other moms said they just rolled over and nursed. But, we really figured that it was no different than having to get up and make a bottle, plus, I always had to get up to go pee first anyway!!
:) Some moms keep the zymes and applesauce/pears at the bedside to make it easier, I didn't, but I'm sure there are some on this site who can give advice on that.
"Don't stop thinkin about tomorrow...." ---- Fleetwood Mac
mom of great Kate w/ CF
|Posted By : Tilo - 2/10/2010 10:13 PM|
I would like to start off by saying that I think you'll be the kind of parents that can get your child through this. Your already researching and asking the right questions and looking for advice.
I am a 33 year old woman, wife and mother with Cystic Fibrosis. I was diagnosed at 3 months of age. I can not offer you any specific details on what techniques were used when I was a baby because so much has changed in the last 33 years when it comes to treating CF. What I can tell you is....that the reason I am still here today and doing fairly well, is because my parents took such good care of me. They did everything I needed every step of the way.
I don't remember much about being a small child with CF. I just remember being fed constantly....being Italian, I think that would have happen either way. As a busy teenager and young woman, my parents made sure that my priority was my health. Health came before school, friends, dating, career etc. That meant that the first thing I did every morning was take care of me (aerosal treatments and physio) and then I could go out and concour the world! Growing up, there were few people who knew that I had CF. To the outside world, I was a normal kid with a normal life. It was my family and I who had to put in all the hard work to make sure that I lived the best life that I could. My parents always treated me like a normal kid. I was not given any special treatment. I was brought up to believe that with hard work I could have whatever I wanted in life. And hardwork included taking good care of myself and always keeping healthy....taking my meds, doing my masks, doing my physio, staying away from people who were sick with colds and flu's and any kind of bugs, washing my hands all the time to keep germs away etc...
A lot has changed with CF in the last 33 years and it is my life's dream to see a cure for CF. I can only offer you some hope with my life story. I had a great childhood, lots of love, lots of friends...and now a husband who loves me and chose me knowing that I had CF and now we have a beautiful 4 year old daughter named Claudia who is healthy and does not have CF. I have had a great life and I owe it to my parents. They stayed strong, never showed weakness, worked hard to keep me healthy, made sure I worked hard to keep myself healthy and still do that every single day.
It will be hard work but I'm still here today with a family of my own. No, it is not easy. Yes, I have bad days. Yes, there are times that I have to be hospitalized (what my mother calls a TUNE-UP)....but Yes, I have had a great life, I have a beautiful baby girl, and amazing family.
I hope this helps you.
|Posted By : PopPop1 - 10/10/2010 10:52 AM|
|I suggest you go to Google, type in the the two genes you mentioned as I just did and find out as much as you can. You may run into a lot of words you don't hear in the office every day, don't be put off, keep reading. You get used to the language after a while, I consider this the most important part of having or dealing with CF. Below find one of the sites I found for the combo you mentioned. I found a nice paper written by 5 doctors in Massachusetts who have experience with my combo and know more than my own CF doctors at this point about the specifics. People who keep learning thrive! I like NIH, CDC, FDA. you may find it useful to see what the European equivalent sites are. Good luck! George|
|Posted By : Chartreux - 10/15/2010 4:00 PM|
|CF is also supposed to be a 1 in 4 but my Aunt all three children had CF. The most|
common thing is the skin taste like salt. My Aunt's first child died at just 6 months.
Their Second child was the same age as my brother and he lived to be 27 yrs old,
and Then their third child my cousin , she was my best friend and I considered her a sister,
we were one month apart in age, she was 25 and I miss her. I remember that they had to take
a lot of pills with meals, they had to supplement with protein shakes, they had to have
breathing treatments and special exercise to get the mucus out of their lungs, pats
on their backs ect... I hope you don't mind me posting..
|Posted By : Sara Denoyo - 1/9/2011 2:13 PM|
|I am sixteen and I have Cystic Fibrosis, I have what I believe is a moderate case, but lately it's become much more severe. I was diagnosed when I was four years old, which is a bit later than usual. I take most of the same medicines I did when I was younger, just some new ones to supplement. When I was younger though, I would mix my enzymes into yogurt, or put them in fruit instead of swallowing them. I'd also chew my vitamins, just until I could take pills. |
An average day to me:
4:30 Vest treatment, 4 puffs albuterol, pulmozyme through nebuilzer, Hypertonic through nebuilzer, PEP if I feel like it.
When that's done I take: 50,000 UI vitamin D, 800 UI vitamin E, 2 Source CF vitamins, Iron, azyithromycin(Preventative antibiotic), bactrim(my current oral antibiotic)
I do a sal***er nasal rinse, you push it through one nostril and it comes out the other, and I promise you it's as disgusting as it sounds. After, I do flonase nasal spray.
5:30 Shower, get ready for school
Before I leave I usually have cereal, juice, yogurt, granola. Whatever, just an assortment of some healthy things and sometimes I'll have bacon or ham and eggs. I take 6 ultrase M20 enzymes with my breakfast.
11:04 6 enzymes with lunch
2:20 head to the gym, I do cardio exercise, usually 15 minutes on the elliptical and 15 minutes on running. And I usually do my inhaler before.
3:00 home, snack, 3 enzymes, homwork, 4 puffs albuterol, hyptertonic saline and PEP.
6:00 dinner, 8 enzymes
9:00 vest treatment, albuterol, saline nasal spray.
For the most part this is a daily routine, when I want to hang out with friends I just shift my treatments. I don't stay the night at friends house's often because a lot of the time I cough through the night and I feel only my family should have to deal with that. But when I do stay at a friends I'll usually just replace vest with PEP, and do that more than usual.
I suppose this could be my story, if that's what you want to call it. But I'm going to clarify, that I do not actually "suffer from" Cystic fibrosis. I am very thankful that I have it, I have no memory of when I didn't have it, so this is my life. There are a lot of things I do wish I didn't have to deal with, the treatments are excessive, the hospital time is unbearable, the scars PICC lines have left on my arms, the way you look when you're on steroids, just plain feeling ill. I could list a lot, but it's pointless, because it's all worth it. I would not want to live without CF. This illness has given me something that really nobody else has, and that's an appreciation for each day I get to breathe. The people I have known with CF have been the most amazing and inspiring that I've met, and they're not giving up. So much strength comes from having something like this, and not letting it have you. I've grown up a lot quicker than most people my age, and I've lived a lot more. In my life I have been in the hospital maybe 40 times, my best friend had CF, and I have a whole family of people who love me at a hospital an hour away. I have been able to give and receive more love than anyone I know.
This isn't the most positive news you could hear, that your baby girl is going to be born with CF, but know that Cystic Fibrosis isn't as scary or Cystic as it sounds.
When you live your life expecting to die at 25 because your "life expectancy" is 25, it puts things into perspective, and you live instead of waiting. I don't want you to think I'm telling you this for any reason besides that if I were you I would have a thoughts crawling out of the woodwork, and I'd be worried that the quality of life would be altered, as it is difficult. With all of the medications and treatment, things can look not so bright, but she could live the most fulfilling life of anyone.
You have time from the beginning, from her birth to take care of her in the best way possible and keep her lungs healthy, and that is a leg up.
|Posted By : shehasmyheart - 4/28/2011 11:32 PM|
|Sara, YOU MY DEAR ARE AN AMAZING YOUNG LADY! YOU WILL GO FAR IN LIFE GOD BLESS YOU SWEETHEART!|