Ask dr bob :
My name is Sarah.
I am nine years old and have brown hair and BLUE eyes.
I have some questions I want to ask you.
What age did you get finger clubbing?
Why is it so important to take your Creons?
Dr. Bob says : Dear Sarah , dr. Bob has brown eyes and brown/black
You are here by placed on the kids list as well.
Ahh your questions well dr.Bob knows the answers honey.
My fingers became clubbed at age 6 and i have REAL funny thumbs
as well , very thick and big nails , it looks like i slammed on
them with a hammer :)
Why is it so important to take your creons ,
1 : there is a thingy in your tummy called PANCREAS and because
you have Cystic Fibrosis that pancreas has a hard time to make
a thing called enzymes , yes what you need to take are the same
things your body normally (without cf) makes .
2 Why do we need enzymes , well if you eat lets say a slice of bread
with strawberry jam and butter then the brave boys called enzymes
are going to split up your slice of bread for you into
" FAT , CARBON HYDRATES and SUGARS "
because we with cf don't have enough enzymes we better use those
pills otherwise our body doesn't get energy.
3 If you don't take enzymes you will get tummy aches , you will have
go potty a lot and mmm (psssst its smells a bit yucky to) I'm an expert
in yucky smelling too.
4 if you don't take enzymes , you don't weight enough , you eat more
and you are thin and always cold (i still have that ) .
I have a little test for you , next time you are in the shower or bath
try to pinch some skin on your bum or on your belly or on your arm
bet it is hard to pinch and get some skin between your fingers , that
means you don't have enough fat , don't worry about that because we
have that , that's a fact of cf as well , if you want write me back
your weight and height , I'm still under the weight that my doctor
see , i am about 25 lbs under that weight , and i eat a lot and take
enzymes and drink scandishakes , but I'm still thin , but dr bob is
tall I'm 6.1 feet :))
I want to go to sleepover parties but I can't because of all my meds
and stuff. What do other people do about that?
Well, I have to say-I'm a party animal, and I will not let a few medical
supplies get in the way of having a great time! I bring my nebulizer
(inhalers dont work as good for me) I do NOT bring the feeds, because
sleepovers aren't very often and one night of no feeds wont hurt. I
am also on
o2 at night, and I dont bring that either...I dont sleep as good....but
sleeps at sleepovers anyway? My friends dont mind the nebulizer because
many have seen them because most asthma patients have one. I do not let
CF ruin my
fun, but I also dont neglect the fact I have it and do take my enzymes,
vitamins, and anti-biotics......that way I feel better when I am the
Lindsey 14 yo PWCF waiting for transplant
HI! I was just curious, when you meet somone new, how and when do you
tell them about cf? Thanks!
I wait a while to get to know them first and if I think they will be
about it I will tell them. It can vary from person to person.
When I was
younger my Mum used to tell the class but I'm older now and I don't
everyone to know. I am 9 and this is my third school.
HI! I was wondering does anyone else ever get sad (depressed!)?
I,m no longer a kid , but the answer is YES !!!
I,m a guy who wants to know all the things that can happen with CF
The big depressing things for me are new dx (diagnosis) , like my
diabetes lately , also the hardest thing for me was going back to
hospital after a long period of time , my liver cirrhosis was extremely
hard to accept , and ofcause the little things like getting kicked
of my work situation , going on disability.
But a depression for a few days or weeks are NOT uncommon , these are
the things that life dealth us with and we have to cope , i may state
that about 30 % of all cfers are on some form of anti depression
medication i.e. prozac/luvox.
This kind of depression is purely caused by the things we have to deal
There is an other form of depression that i had for more then 10 months
but that one is caused by a body function , if you liver goes really
of whack it will slowly push poison into your blood (bulrubine and
toxic stuff) this will go into your brain and can cause a mojor and
mean major depression , this one is not so common and will go away
some doctor is alert on this (in my case the depression went away after
liver medication (ursuchol or actigal) and a lower (normal) level of
bilrubine and alc. phosphate.
Hi Dr. Bob my name is Nicole
I hate taking my ADEK, they taste awful
Is it true that I might lose my sight if I don't take them?
I am 12 years old
I liked it better when I used to have to take the Poly vi Flor and the Vit.
Dr.Bob says :
If you dont take your ADEKS you will NOT lose your sight , but another thing
happens you wont be able to see in the dark and thats called nightblindness.
I guess you get liquid ADEKS now , if its a mix made by your pharmacy (like i
have) then you can ask them to add a nice taste to it , mine taste like anise.
In order to let your body work better you sure need to get your vitamins in ,
so even if they taste lousy you will need to take them :)
dr. bob why can't i gain weight? i eat all the time and i take my emzymes. i
years old 4 foot eight and weigh 60 pounds. my name is benji, i was diagnoised
at birth, i have had 4 surgeries on my stomach three surgeries was before i
was a year old, the other was when i was nine, all was because i had blocked
I take a daily diet of 5000 calories to maintain weight and indeed thats an awful
lot of food , but i can gues what is the matter with you :)
When they did surgery,s on your stomach , did they remove a part of it , i know a
little girl with the same surgery,s and they took half her stomach away , thats
why you have a hard time gaining weight , now weight is a good thing , but more
important is , how are you feeling , do you feel well enough to get you through
the day in school , can you play with your friends , if that is the matter , dont
worrie to much about your weight , we will always be skinnie , but if you feel
allright and keep eating , things will be allright i,m sure.
Hi Dr. Bob:
How can you tell if your fingers are clubbing. Also do you have a feeding
tube? I do and I absolutely HATE it. I don't understand why I have to have CF.
My mon says it's because God chose some one special. But how can that be?
Yaaa! I get to take SVN's, and TONS of pills, and Vest treatments, and
inhalers, and feeding tube. That sure doesn't make me feel special. I HATE
having CF, Extremely bad. I just want to get rid of it. And the worst thing
is, is I'm real skinny. I am in the 8th grade and weigh only 72 pounds. All my
friends say, "I wish I could be as skinny as you. Then I wouldn't have to
worry about what I ate." They don't know at all. They wouldn't want to be as
skinny as me. They would hate it. There's nothing fun about being skinny.
Extremely Depressed W/ C.f.
My name is Katherine but my mom calls me katie.
I am 9 years old and i just got my puter from fill a wish.IN florida.
I have a sister and 2 brothers IAM the only with CF and it stinksssss
Do you email other kids with CF?i have to do mt treatnens mom is yelling at me
she wants to go to bed. thanks Katie
hi my name is billy i am 13 years old and live in Mass USA. I have both CF and
asthma. i am on aol and would like to talk to someone else that has CF please
IM me (billy81128).
My name is Cassidy. I am 11 years old and I have C.F. I live with my mom and
dad and my older sister Lindsay. I am the only one with C.F. in my family. I
like having a place to talk to other kids with C.F.
sometimes i get very angry that I have to take pills and other people
don't. I don't think it's fair. I sometimes don't do my nebulizer or
thairapy enough and I give my mom a hard time. Daniel (7 years old)
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