new to cf

[texascfdad]

hey everyone.
im a 23 yr old male from texas whos son was born with cf. he is 6 weeks old now and we are already seing a cf clinic in san antonio. the first two weeks of life he was at santa rosa inthe NICU for a meconeum ileus. he is on creon 5 enzymes and we are doing cpt twice a day although thankfully he has not shown any respritory symptoms yet. BTY, he has the homozygous Delta F508. i guess we are blessed though that he is such a good baby. hes not colicky, and he only fusses when hes hungry, and he sleeps most of the night. so at least thats one thing we dont have to worry about on top of everything else we will have to go thru with him.
its such a big change and very stressfull dealing with all of this. me, my wife, and both of our families are smokers, so we have to quit, at least me and the wife. its hard to quit, but we have cut back and in the mean time everyone knows that all smoking is done outside the house, and if hes outside, not to smoke around him.
its hard thinking into the future all the things i thought we would do. and now i dotn know what he will be able to do when hes older. i wanted him to be in the boy scouts, but now im worried about him being around the campfire smoke, and im a volunteer firefighter here, and just figured he would grow up at the station too and be a volunteer also, but now i dont think he can, unless he wears a cartridge respirator or something. the doctors said his enzme tests for his liver came back high, so when we go back the 14th, we have to take a liver sonogram and another test. but i cant find much information on liver problems with cf. sometimes i worry about what is gonna happen to him and it just makes me sick. i think sometimes the only thing keeping me and my wife strong is our faith. how do you look at your precious son, the most adorable thing youve ever seen and teel someone or yourself that hes just perfect, when you know hes got cf. I know he can grow up and live a semi normal life, and that there is new research and medicines coming out, but how does it affect you CFers lives knowing that you only have less than half the life time of an average human.
I used to think i had some control over things until my son was born with CF. Its difficult going from in control to not having control of anything beyond your own decisions.
any comments or suggestions would be appreciated. I love my son so much and want to rasie him the best i can

 

[anonymous]

Dear Texas Dad,
You have such an advantage just knowing that your son has CF already instead of going through years of problems & not being able to figure out what's wrong. You will find that there are different severities of CF. I am in my late 30's and have heard from others here in their 30's and 40's and have heard of others in their 50's, etc, so it's not just a childhood disease now like it used to be. Your son may go through life normally, he may have some bumps in the road, it's impossible at this point for you to know how it will go. I applaud you for not smoking around him and if you could quit, that would be great (easier said than done).
It sounds like you guys are being proactive w/ your son's CF and that's good. God will give you both the strength that you need.
Obviously, we're not Dr's around here, but if we can ever offer an opinion, just ask. Good luck & God Bless

 

[Liza]

Hi, This is a difficult time, adjusting to CF and all that comes with it. I don't know how new CF is to you or what you knew before your son was diagnosed. We did not know much about CF until our daughter was diagnosed. Correction, I knew nothing, hadn't even heard of it, my husband had. We have learned over the years to take one day at a time.

As for scouts. Both our daughters. (the second one being born just a week after the older one (3yrs) was diagnosed) Both our daughter were involved in girl scouts. They were in good health and had no limitations in what they could do. They were a part of scouting for 6yrs. Until they lost interest. We went camping, they went to scout camp and participated in everything. From hiking to cooking over the camp fire, making smores, breakfast, lunch and dinner. From starting the fire to putting it out. I was an active participant in scouting myself, and made sure the troop leader new about their CF. I was able to get a portable nebulizer for them so they could participate in the camping part. I was always there except for resident camp. Sort of... When my oldest went to horsemanship camp I went as a volunteer but not in her camp. I was there at camp but in a different area. I saw her for her treatments and occassionally in the dining hall. My youngest, when she went, I let her go alone, completely. They have also been to boyscout camp, as staff family. Again, participated in everything from horseback riding, the polar bear, rock climbing (that rapeling wall thing), to campfires. If the smoke came towards them too much they moved. That's not to say any CF'er wouldn't have a problem. I just want to say, don't rule it out. Let him grow up to be as "normal" as possible. Let him at least try to experience everything you've mentioned you've dreamt for him. My girls took their inhalers on a hike, we weren't on a time crunch and even the other girls sometimes had difficulty. The higher altitude was a concern sometimes but we weren't that high and we just kept and eye out. You and he will learn what his limitations are. But please, please don't rule it out just because he has CF.

As for smoking. It is a difficult thing to stop but you can do it. It took my husband years to quit. He never smoked around our kids anyway but still. Yours and your sons health is a motivating factor though. My mom quit smoking when she found out about our girls. She went so far as to having the carpet replaced in her house, the air ducts cleaned then informed all their friends that there would be no more smoking in her house even though we were only able to visit about once or twice a year. It comes easier for some than others. Just keep trying. My husand used nicorette gum.

I guess that's it I just wanted to say not to let CF get in the way or your son participating in scouting. My girls loved it.

Liza
(mom of two teens w/CF)

 

[anonymous]

Hi There,
I just wanted to say that I know how you feel and when your baby is only 6 weeks old and with the diagnosis it is the hardest of times.
It is natural to have many fears and it is just something that you have to go through unfortunately.
It has taken me many months to stop constantly thinking about the life expectancy but you do, and sometimes it still does cross my mind but I really try for my son to not get wrapped up in it.
Like everyone says there is a lot of research and new medecines that will be available to our children and for that I am grateful.
My son is 16 months and he only does his enzymes and PT and vitamins, but we have had a spell on a nebulizer for a infection.
Other than that time he is a very healthy little boy and some days I forget that he has CF which is nice.
I know that he will do scouts, football or whatever he wants and I think that CF kids are pretty special they really do enjoy things a lot more because they don't seem to take it for granted.
As hard as it may sound try to just enjoy your son and bond, he most likely has a wonderful future ahead of him.
But I know the shock is the worst part and you think it will never get better but it does.
I wish you the best of luck.
Rebekah
Mother to Matt 17 mths w/CF

 

[anonymous]

Hi Texas Dad,

I remember so clearly how difficult those first few months were. I feel for you and your wife! After a lot of research and involvement with the CF foundation, my husband and I have so much hope for our son's future. I don't believe we are naive or seeing with rose colored glasses. My husband has a medical degree and, through my work, I have gotten to know many CF patients and their families. Drs. and researchers are making so much medical headway. We're both confident that our son has a bright future. You'll have to work hard and be dedicated at keeping him healthy by doing treatments, always taking meds, etc. But, it's well worth it. Our pulmunologist's exact words to us were, "I expect us to have a definitive solution within the next 5 to 8 years." I remember this when I'm having a bad day! Now, that doesn't mean that there will necessarily be a 100% cure in that amount of time....just that research and scientists are making incredible advances. Hang in there. I can tell how much you care about your son. He's lucky to have you, and chances are that he'll be a healthy and normal kid.

Carey

 

[anonymous]

Hi,
I have two children with cf and we live in Houston. We went through the same feelings when my daughter was diagnosed three years ago as an infant. I tell my children (ages three and one year) that they are perfect all of the time. I really believe they are. They are exactly as God wants them to be, so they are therefore perfect. My son, Jack, just turned a year. He also had meconium illeus. His liver enzymes were also high after his birth. He was put on Usodiol. It took a few months for his numbers to go down to normal. They still tell me he has liver disease though because his liver is enlarged. Kids with meconium illeus are about 5 times as likely to have liver problems. It does get easier as time goes on!! My children are beautiful and they really do live a "normal" life.
Sharon

 

[anonymous]

OK i tried to register but it wouldn't let me because i had before I just forgot all of my stuff but since my email is alreayd listed it won't let me do it again. so i am anon but i will sign my name..........off topic sorry

I live in Texas too. I have CF and go to Santa Rosa as well. I love it there. Be comforted in knowing they will take great care of your son and will try to educate you the best they can. I didn't ever get to go to the pedi side but the friends i have made from santa rosa say they love the pediatric doctors. The staff and hospital nurses are so wonderful as well. both adult and pediatric sides.

As for you thinking of his future. Like everyone already said the advances in medical things is improving all the time...even the eguipment for them to research and make things are improving and helping them do things better and faster. Think of this when i was diagnosed 20 years ago the life expectancy for me was 11......20 years later its in the 30s....in tens years i expect it to be the 50s and so on.
I was in girl scouts from kindergarten to 6th grade. I loved and still love camping. I am an outdoorsy kind of girl. When i was younger you couldn't keep me inside unless it was freezing but if there was snow i was out there....you know how it hardly snows here in texas. Of course my mom tried everything to keep me from getting sick...you know not out in the cold for to long and making me change out of wet cold clothes etc but she still let me be a kid at the same time. I fished, swam, climbed trees, played make believe (had to in the country when your brother is 6 years younger no one to play with), rode horses, camped. you name it i probably did it. As for the camping and camp fires go like the other poster said jsut stay out of the direction of the wind and your usually good, of course that depends on how bad it bothers a person. What I am saying is let him be a little boy. Of course with the cf there are cautions and things you should watch for and extra things like breathing treatments he has to do but he can still be a little boy playing in the mud with his trucks. It can be done. Take me for example. I went to camps and was a normal "tom boyish" girl. I just washed hands more than others, took medicne and such and had to take breaks more often. I never let it interfer but i also never forgot things...of course my mom didn't let me either.

I lead as much of a normal life as i could. I am one of those shy and quiet type cfers you might have heard being reffered to. So I didnt have much of a social life in high school, but that was also because i didn't relate to them. I couldn't stand most of my class mates they seemed so immature...and with cf you tend to mature faster than others and tryign to relate to kids in high school is hard because of where their priorities are. I didn't even date until after high school. But I got married at 19 to a wonderful man who I met at church and we have been happily married for over 2 years now. Its great. We have chosen not to have kids but thats our reasons besides me having cf. I am a housewife bacause I can't work right now due to the way government assistance works. I am in fairly good health and plan on being around for a long time till God wants me home. Yes we have a deep faith in God as well. So you can see I have and am living a normal life as much I can. granted I am not doign as much as others with cf but we are all different.

On a side note I have a very good friend who is a body builder with cf. Hows that for "normal boy" stuff? I say etraordinary.

As for smoking I agree try your hardest to stop smoking. For me personally just the smell on clothes makes me cough depending on how bad it is, more so if they jsut came from smoking. So please try to stop. My dad stoped smoking but started again not to long after he stoped. I dont know how long he stopped. But i would go outside at night and catch him smoking and of course he denied it but you know he is lying when he smells like smoke, you see the like of the cig moving around and going to his mouth in the dark and then finding the butts the next day. So please take if from a cf kid that saw her dad smoke, try to stop, and if you can't don't lie about it lieing just makes the trust line thinner.

I hope this helps you some. Your not much older than i am. So if you need to talk just email me. Remember I am a fellow texan that goes to the same hospital as your son, so maybe i can give you a few tips. I hope the other member that goes to Santa rosa will post. She knows more about the pedi side and lots of other things.
Amanda
akcooper_01@hotmail.com

 

[anonymous]

Amanda,

It is so nice to hear success stories like yours. i'm so glad that you have lived and healthy and "normal" full life. As a parent to a cf child, it is always a joy to hear from adults that are doing well and have such a great outlook on life.

Julie

 

[anonymous]

Dear Texas,

I feel your pain my son is going tobe 19months soon we found out at three weeks old in NJ there is a mandatroy test they do before you leave the hosp. My husband and i did everything everyonce else does when you find out something like this but i have to say God only gives you what he feels you can handle and all of us can handle this this forum is great for questions and anwers and what ever support you need Jason is on the creon with all meals pt's twice aday and the nebulizer when needed.
I will say one of the first questions from thr dr's was about smoking i don't smoke anymore.. my husband goes outside to smoke it's hard to stop but in time you will you have to believe you can and you will just remember lots of gum.
Remember your son will beable to do what kids do scouts baseball ect the older he gets he will know what his bodly will let him do vs not do

Lisa mom of Jason 19 month w/cf

 

[HollyCatheryn]

Get him on Reliv! It is an amazing supplement that is easy to digest and specially formulated to help your whole body function at its highest capacity, fight infection, and boost immune and organ function. There is a special formula just for kids that has the fatty acids that their brains need to grow well. My daughter loves hers and has only been to the Dr. twice! Even though I'm a teacher and she's with me around tons of kids and families all the time. I also have seen my CF improve amazingly in the last 2 years I've been on it. I've been in the hospital less than ever - even as a little kid. My kidneys are functioning well again, my weight is stable for the first time ever and I haven't taken a sick day from school in the last year!! There is a distributor I know in Houston. He can get you all set up and also connect you with some other people who have CF or who are parents of people with CF who've been on Reliv, so you can talk to them and ask whatever you want. Feel free to email me at <A href="mailto:jaloughlin3@sbcglobal.net">jaloughlin3@sbcglobal.net</A>Best of luck to you.

 

[anonymous]

Holly Cathryn,

Is this an expensive supplement? Do your cf doctors say that it is ok to take? Is there a web site that I can find out more? Just curious.

Tyler

 

[anonymous]

Hey Julie,

I'm glad you liked my post. My life hasn't been easy don't let me fool you. It has been full of hospital stays, surgeries and even depression. It took me a few years during my teens to realize I won't let CF get to me. I just want all parents to know that your kids can live normally, or as normally as possible. They can have problems and phases where they think cf will get the better of them and some never have those phases, its just a part of life. I'm glad you see my story a success. I never thought of it that way but your right in a way. I know it could be a lot worse and even if it was I would still be me and make the best of it. Thats just who I am. I am the one to cheer others up even if its me who needs it. Cheering others up is what makes me happy too. Anyway what I am trying to say through all that mumbo jumbo is your child(ren) with cf can have all sorts of bumps in the road of life and still have a great out look on life. Most cfers do anyway because we just enjoy the little things in life that other take for granted, we literally stop and smell the roses. Cfers have so much wisdom at young ages it amazes people much older than them. I have more friends older than me, like 10+ older than I do my own age. Its weird. Anyhow. I am glad that my story gave you some comfort. even if it was just one person.

Amanda<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[texascfdad]

thank so much for your comments and suggestions. im glad to know that smoke sint as bad a problem as i thought. not to say its good for him. i knoew almost nothing about cf until my son was diagnosed. and then i did alot of research on it and i now feel like an expert on the disease itself. but i still didnt know that much about the lives and lifestyles of cf patients. talking to yall has really given me an insight on what i might expect in the future. i have read up on the new research going on funded by the cfft and the future does look very bright. i just hope i cna raise him up normally and not spoil the snot out of him. i really need to worry about mom not doing it more than myself. i tell my son jokingly while i do his PT "See son, i aint afraid to beat you, so you better behave." he doesnt understand me though. but he knows i love him. i appreciate all of your coments once again, it has been a real insight.
David dad of 6 week old David w/cf

 

[Liza]

We jokingly referred to PT as their daily beating too. We say, Gotta go, it 's time to go beat the kids again.

Liza

 

[AbsintheSorrow]

My parents used to love freaking people out in public. They'd say something while they were out about having to "go home and beat the baby" lol

 

[IG]

texascfdad,
I read that you go to santa rosa... Is that also your CF clinic? IF you don't mind me asking who are your doctors there? I can tell you that the staff there is one of the best I have come across, the doctors are some of the best in the business and you can't go wrong with them (yes I'm talking about the pedi pulmonologist) I was under the care of the CF team there, and although I may not tell them this they are some of the best people, not to mention doctors, I have ever dealt with. You are in good hands with them. I'm sorry that your son was diagnosed with CF, it's a hard thing to hear. And like Amanda said we know some amazing people with CF, that amazing body-builder being one (Cutest CFer on ninth floor hands down). And the half the life of an average human, isn't guaranteed! There are many CFer's who go to live onto their 40's and longer. Nothing is guaranteed just because we have CF. Like you said there are new technologies and new medications that we didn't even have 5 years ago that are extending life even further than what we had as our life expectancy 10 years ago. And of course, I've had the crap beat out of me too, especially by the annoyed hospital people... they just love doing that, and playing vampire too.... I've given pints to their cause.

 

[texascfdad]

yes, we do go to the clinic at santa rosa. weve only been there once so far, but we go back again next week. Dr. Karen Franks is our physician, Melanie Drummond is the RN, Kathleen Lipko is the dietitian, Trish Mendoza is the social worker, and Teresa Vallier is the respiratory therapist. I did enjoy them when we went, and they seem really nice and caring. people would come in the room we were in and want to see David, cuz they heard there was a cute baby in there. I felt pretty proud lol.

 

[IG]

Patricia Mendoza will go out of her way to help you with whatever you need. She is one of the best Social Workers I have met (Best person I've met too). Teresa Vallier is so caring, so considerate. Not a sweeter person in the world. I believe I've met the dietician, but not 100% sure. I'm not familiar with the Dr. My doctor is Dr. Willey-Courand along with Dr. Inscore, Dr. Mangos, and Dr. German. (GREAT group of people, but don't tell them I said that) I've probably met the nurse too, but the name is only a little bit familiar too me. And yes, you have cute baby syndrome. It's sure to bring everyone from the clinic to your door. Some people you might know and alot of people you don't. Like I've said before they are a great group of people, the best I've ever met. We have a great personal relationship too, even though I've gone over to the adult side, I frequently stop by just to chit-chat, or ask Patricia for advice... Like I've said before Great people. I just can't say that enough. I know it might not seem like it at first, this whole clinic thing being a new experiance, but they are really good at what they do. Hopefully you'll find them as good as I do... of course not everyone's going to agree with me (but 95% of them are...) I hope you have good luck with your next clinic visit.

 

[anonymous]

Well I will agree with you 100%. I love them all. When I first started going there the dietician, respiratory therapist were still going back and forth to the adults and pediatricts, they were busy bees (still are). Now they have seperate ones for adults and pedi but they are still great people on both sides. I think Trish is still with adults and pedis too? I dunno but she is wonderful. Oh and Terri Philips is the nurse practioner ( i was told she works with pedis too but I don't know if she still does?) She will also go out of her way to help you anyway she can. I swear I don't know when these people sleep. Oh and for Teresa she is the kindest person ever (they all are). There is just something about Teresa that make syou just love her automatically. When your son gets old enough to do pulmonary functions tests she will do them and its so funny when she does. She is so quiet and soft spoken but when she does those tests she gets loud and excited kinda like to pump you up or something.

Also when I started going to this clinci I was already at the aldult side (i moved and san antonio was closer). The first day I went I saw and meet everyone, even all the docotrs that were there even though I don't seem some of them (only in the hospital). Most of them just came in to introduce themselves and to meet me. It made me feel so comfortable with them and welcome. I wasn't just another case, I was a person to them. Thats the best feeling you can get when you have to be at a hospital so much. Knowing they think of you as a person makes you feel like they will do everything in their power to help you. ( i know all doctors try to or most). Its just an unexplainable feeling. They treat you as part of the family. I know Terri always calls us her kids. They really take the best care that they can possibly do. So feel comfortable with your CF clinic. You have two people here who love them (even though I have had the pedi doctors). The whole staff realy works together and is a family. Take some comfort in knowing that your baby boy will be loved and taken care of like he is a part of their own family. As a new parent I hope that that will give you some peice of mind. Oh and don't hesitate to ask them anything, they don't mind at all.
Amanda 21 with cf loves her clinic <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Shelby]

I am new to CF as well. My daughter was diagnosed at 5months and is now 9 months old. Our kids have the same mutation. My daughter has both GI and resp symptoms. One thing that I have learned is to take it one day at a time, try not to look to far ahead. Not that any thing bad is going to happen, but one day is enough. Enjoy your son, if you spend everyday worrying about what could happen, you will be sad all the time. Sometime I feel that I don't just get to hold my daughter, because she needs meds or breathing treatments or CPT. So I set aside 1hour a day and I hold her or play with her, or we take a nap together. For that one hour I try to forget that she is sick, and think of her jsut as by beautiful daughter. I moved to New Mexico from Texas and the team that takes care of my daughter here is amazing, I always have a million questions for them. So my advice is to ask your CF doctors about all of your questions. They should be able to anwser them. it may not be the anwser that you want tho hear, but to me knowledge is power and if I know what I am up against, I feel better.