I have read many posts on here and I need to know about the severity of my son's CF. I got the big scare/wakeup call on his last hospitalization. I see many people on here who have very little symptoms and take very few medications. My son will be 3 on Friday. He has been hospitalized 11 times now since birth for CF related problems. He is on alot of medications ( ADEK's, Albuterol,Pulmicort,Pulmozyme,TOBI,Zantac,Prilosec,Reglan, and Creon 5) , He has a feeding tube, had to have a Nissen Fundoplication about 7 months ago. I want the honest truth is his CF severe, moderate, or average? I can't seem to get a straight answer from his Pulmologist or Pediatrician. I am really scared and nervous. My inlaws and husband seem to be in big time denial, they always say oh he'll be fine, therefore I really don't know who to talk to and vent. ):Thankyou, Donna mother of Mikey 2(almost 3) w/CF and Hannah 5 w/o CF.
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Should I be worried?
- Thread starter anonymous
- Start date
without seeing your son we cant tell, and even if we could we are in no place to say what condition he is in. only the doctor can tell you. doctors never really give straight answers, but if you keep insisting that you want some answers in black and white then they eventually will. or perhaps ask a nurse, they seem to tell things like it is. i also wouldnt be worried about how many meds hes on. most cfer's take all those meds. when i was little i wasnt on many meds but that was because no one had discovered vitabdeck and pulmozyme. they also didnt know that h2 blockers helped absorption back then. alot of cfer's have feeding tubes too, even people who have mild cf have them. so dont panic, but do insist your doc tells you the truth.
The trouble with "telling a person straigt" is that the doctors just don't know. It does sound like your son is on a lot of treatment, though. I am hoping you there is a Fibrosis Clinic accessable to you to take your son to. They know best how to handle the CF complications. Unfortunately there just are any easy answers, nor is it emotionally easy to deal with. Fortunately there there are a lot of people out there who understand what you are going through. You are not alone.Take care, and best wishes for the little one.--H
Mockingbird
New member
Hello, Donna. To me, your son's cf does sound severe. But, all that means is he has gotten a rough start. I had a bit of a rough start myself. Well, that is what I am told anyway; I don't actually remember anything from back then. =-) I know that until I was about thirteen, my health and weight were pretty bad. There was a point my health dropped even lower than what it was, and I was looking at having to have a feeding tube, and maybe long-term hospitalization. Then, almost overnight, everything changed: my healh came up, I had a really huge appetite, everything tuned out and I became really healthy reall quickly. My point is, if your son's cf is severe, that does not mean it is going to stay that way. To tell the truth, I'm a little glad the doctors have been vague. A problem I have with doctors is they try to guess age expectancy and things like that. Each cf person is an individual, and it is impossible for doctors to know the future. If you cannot get a straight answer from them, that may mean they really don't know. Well, I don't mean to destroy your trust in doctors, just that they are not god, even though there are some that would like to think so. =-)I'm sure this is not easy fo you at all. I know what it is like to have Cf, but I have no idea what it is like to have a child with CF. If you do need someone to vent off steam to, jarodbulthuis@hotmail.com. I don't at all mind listening. You have every reason to be worried and stressed out, but you don't have to do it alone, you know? That is what this site is for, so we don't have to be alone. =-)Jarod22 with CF
Donna,I can also tell you that as a child I was very, very sick. The Dr's even had the "we've done everything we can" talk to my parents & then things just started looking up & here I am now at 37 years old & no transplant (yet). My parents prayed, prayed, prayed for me & I'm sure you're doing the same. I don't want to give false hope, just some hope. As I'm sure you know, each case is individualized, so it's so hard for me & maybe even the doctors to predict. Hang in there and I hope & pray things will start to look up for you<img src="i/expressions/face-icon-small-smile.gif" border="0">
Wow 37 now, I just read your post you made my night <img src="i/expressions/face-icon-small-happy.gif" border="0"> I am just so frustrated with all that is going on with Mikey, but reading such encouraging things from all of you really helps. God Bless all of you.<img src="i/expressions/heart.gif" border="0">
B
Beaz
Guest
Donna- my little boy, who is now almost 7, had a similar sounding course and I asked the same questions. The doctor did say that around age 3 kids who have had a really hard time often find things getting better due to growth of their airways(along w/ the rest of them!) and this has proved to be true for us. He's still on alot of meds, he still gets supplemental tube feedings, but he's hospitalized alot less frequently and he's a happy, wise little guy. Hopefully, you'll turn a corner soon and see things get a little easier. Hang in there!
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>I have read many posts on here and I need to know about the severity of my son's CF. I got the big scare/wakeup call on his last hospitalization. I see many people on here who have very little symptoms and take very few medications. My son will be 3 on Friday. He has been hospitalized 11 times now since birth for CF related problems. He is on alot of medications ( ADEK's, Albuterol,Pulmicort,Pulmozyme,TOBI,Zantac,Prilosec,Reglan, and Creon 5) , He has a feeding tube, had to have a Nissen Fundoplication about 7 months ago. I want the honest truth is his CF severe, moderate, or average? I can't seem to get a straight answer from his Pulmologist or Pediatrician. I am really scared and nervous. My inlaws and husband seem to be in big time denial, they always say oh he'll be fine, therefore I really don't know who to talk to and vent. ):Thankyou, Donna mother of Mikey 2(almost 3) w/CF and Hannah 5 w/o CF.<hr></blockquote>
One Big Thankyou to all of you who replied to my post.<img src="i/expressions/heart.gif" border="0">It's good to hear about all of you that had a rough start like Mikey is having now and how well you are now. I re- read my post I think I was feeling this way because everytime he has been in the hospital there are usually only a few other CF kids there, and the majority of them are ones that were diagnosed later in life not at birth like my son was. So I always have in the back of my mind if my son is having all these problems and he has had excellent care since 2 weeks old , and most of the other CF kids didn't recieve proper care until being diagnosed that's why they are more ill than alot of other CF patients. The little girl who is there alot with my son wasn't diagnosed until she was 11 now she just turned 13 is waiting for a lung transplant. Another young man didn't make it waiting for his transplant, he also wasn't diagnosed until he was 8. I know that being in a hospital setting one is exposed to a small percentage of the whole population, and therefore sees alot of illness instead of good health. I shouldn't be complaining anyway, things could be so much worse for him. He is a very happy, active, mischevious little boy, and we are truely blessed to have him as a son.<img src="i/expressions/present.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0">Donna mom of Mikey 2(3 tomorrow) w/CF<img src="i/expressions/face-icon-small-cool.gif" border="0"> and Hannah 5 w/o CF<img src="i/expressions/rose.gif" border="0">