Another survey

[ReneeP]

I was reading all the responses on Jennifershope's post regarding how often people miss treatments/meds. I am very interested in the subject since I have two daughers with CF and worry about whether they will take care of themselves once they are on their own. I am curious as to how directly related your current compliance is to how much you were forced to do them when you were young.

What I'd like to know is how strict were your parents in making you do your treatments when you were a child and how are you today with doing them yourself. Do you think your current daily habits are a direct result of how you were raised?

Thanks for any responses!

 

[JazzysMom]

This is my kind of topic. Most of my non compliance is from not having discipline as a child. First I was dx at 7 so that was a little bit later. Secondly my Mom felt (tho it wasnt actually said it was obvious) that she wanted me to enjoy the time I had. They were told I wouldnt live to my teens to she never pushed me to do treatments. My times in the hospital as a kid & teen were 100% fun so not doing treatments didnt have any real problems in my eyes. Well here I am 30 years later paying for it. Granted CF is progressive & I might have problems if I had taken care of myself, but chances are good it would be a bit easier now. Who would have thought! I loved the freedom I had (in general not just about CF) & thought I had the greatest Mom, but looking back & being a parent now...I wish she would have put her foot down more!

 

[izemmom]

Oooooh Renee - good topic! I'm curious to see the responses, since I've often wondered about this, too. My question for YOU is: how the heck do you manage five kids with two cfers?????? You are my hero!

 

[littledebbie]

My Mom never missed one of my treatments..well except on my
Birthdays and Christmas morning.  She laid my pills out I took
them.  I took over at about 14 and was pretty much compliant
until about 16 and then you know..life happens.  <br>
<br>
I do not think compliance in my childhood had any affect on my
compliance as a adult.

 

[Dustin82]

MY parents always said "Dont u think u should do a treatment" and 9 times out of 10 I would do one just to make them happy and I was alway good with my meds because I didnt like my stomach hurting.
Dustin 24
Missouri
CFRD

 

[EnergyGal]

When I was young, I knew how serious CF was and I was very scared of dying so I used the fear of dying young to motivate myself and I took extra care of myself. It was my own decision and I feel my parents coached me a long. I started doing my own CPT on the sides that I could clap and they would do the backs. Back then who knew from a vest. I moved out of the house when I was eighteen and went to college and always put my treatments before boyfriends and school. I have no regrets because I did everything in my younger years that I could possibly do and probably was able to achieve it all because i kicked butt on the health.

 

[ReneeP]

You guys are so great. I'm always amazed at how fast people here respond to my questions. So far we're 50/50 on whether current compliance is a direct result of your childhood compliance.... I can't wait to see where this will go.

And Tami, you are too kind. I am sure I don't deserve to be called anyone's hero though. I handled things very well I think up until recently. This has been our hardest year yet and things just seem to be progressively getting worse. Just yesterday while I was at work I had a call from my 7 year old's ENT informing me that he just saw Kacie's last CT Scan and she really needs another sinus surgery (5th one in 10 months). And I swear it wasn't 10 minutes later that our CF dr called to inform me that my 11 year old just cultured MRSA for the first time...
To say the least it wasn't a good day. I think right now I am angry at the world and cynical about everything. That's one of the reasons I asked this question because I know the girls get so fed up with everything they have to do and sometimes I just want to say screw it...no treatments tonight. Let's go to the movies instead. I want them to have memories that don't involve CF. But my husband is always there to say no... you can't do that. It's setting a bad example for them. I'm just curious how strict I have to be in order for the girls to get the idea that the treatments are very important. Is skipping every now and then going to make them non compliant later???

So sorry for rambling...got off on a tangent for a minute there...

 

[kybert]

my mum was quite strict. but she wasnt a total nazi. if she was in the position you described above, she would choose the movies over treatments as long as it didnt happen often.

 

[coltsfan715]

My mom took more of the active role in my health stuff than my dad - he was gone a bit with the military sooo yeah. My mom always made sure I did my meds when I was younger when I got into middle and high school I sort of took over, all the while my mom was right there saying did you do this did you take that. I will say I did okay. I was awful at taking my meds during my senior year and the year after I graduated. I kind of just wanted to be "normal" and it was nice to "forget about CF" and not have to take all the meds. I was also out on my own for the first time so it made it a heck of a lot easier to miss treatments cause my mom wasn't there to nag me about it.
I ended up moving back home after being out of town and out of state for about 4-5 months. When I got back I went to the doc and did some tests and was amazed at how much my health had changed from a few straight months of noncompliance. THAT is what woke me up. I do pretty good with maintaining and doing most of my meds now. I miss my inhaler most often. The rest I don't really miss too much, except for the occassional pill every now and then at meals or what have you. My mom did her best to try and instill the responsibility in me. Unfortunately I had other things in mind for a little while, but now I see the importance, kick myself in the rear for not doing my meds a few years ago, and try to keep them straight now.

So I guess to answer your question No I do not think my med regime and habits now are directly due to the way I was raised. If I had not had the sudden drop in health that I had - I probably would not be as compliant as I am today. For me it was a matter of seeing firsthand what would happen to my body if I didn't do it. I wish it hadn't taken that for me to figure out that yeah I wanted to do my meds, but it did.

Lindsey

 

[blindhearted]

I had nurses or RRTs that came out to my house (paid by insurance) and did manual CPT (watched me do my nebs before CPT) around 2 to 3 times a day from the age of 3 - 19 (when I was forced to use the Vest, most cost effecient). and my mom would give me my late night CPT until my now husband came into the picture. He would do my treatment when we were together, mom did it when he wasnt around (until I started using the vest. he still does CPT at night now since he is here). Now even though I had people "forcing" me to do my treatments....I admit, I still tried to sneak my way around them, because in all honesty, you get tired of treatments (and other people schedules) running your life (specially in the teenage years). I was known around 5 yrs old to lock myself in the bathroom and beg for "5 more minutes" (at least this is the story my now boss/former nurse likes to tell everyone)...but that's another story.

Anyway, now at 24....I try to do at least 3 treatments a day. Either neb/vest, neb/CPT, albuterol puff/acapella. My parents kept telling me when I was growing up that if I wanted to live a long life, I had to do my treatments and follow doctor's orders...that's what would keep me healthy and alive. I also did treatments to get them off of my back or just to make them happy. When I would slack off, it would show (specially now). I occassionally skip TOBI, HS or DNase because of being too tired (no more than 2 treatments in a row) or irritation to my throat (but I okay the length of time with my docs first).

As far as pills...you miss enzymes a few times after eating pizza, you learn quickly not to do that again. and I can handle any pill that is twice a day, but stuff in the middle of the day (like an antibiotic that is 3-4 times a day) I stink at remembering.

 

[Allisa35]

To be honest, I don't really remember my mom saying "do this" or "it's time to get your treatment." I was diagnosed at 3. If my memory serves me correctly, I just alway did them. I'm sure she would tell me when it was time to get a treatment. I don't really think I gave her too many problems with getting the treatments. That was something that I always did. The CPT is what I hated the most. We had received one of those tables that kind of resembles a massage table to use for the CPT. You could lift it up (I think it had 3 different levels) and lay with your head on the slanted end while you had the CPT done. I hated it!! I was one of those kids who was pretty compliant to what my mom said to do.

I knew I had to take pills before eating and don't really remember her having to push me to take them. The one thing I do remember is whenever I had to take a pill (if it was in tablet form), sometimes she had to stand there and watch me take it. I had a hard time as a youngster swallowing tablets and I would get a little anxious when I had to take one. Once they switched to capsules, I was fine.

My dad wasn't in the picture, so it was just my mom and my grandma taking care of us.

 

[chantelfox]

I know that my compliance ( I rarely skip a therapy/vest session or
my nebs....the only reason I might miss nebs, besides Tobi because
I hate it, would be if the pharmacy couldn't get it to me before I
was out) is due to my mom and dad's faithful compliance when I was
younger. I remember hating to do therapy and would throw a fit when
I was really young. I did not have nebs to do till I was 12.
When it was time for me to take over, at age 11, I continued
to do my stuff faithfully, NOT because I feared death. But because
it was a part of my life and my daily routine for as long as I
could remember. I really did not know about CF leading to a
"young death" until I was about 14 or 15. I had
always planned to be 90 years old like my great grandmother. I
guess my parents did not want me dwelling on that aspect of the
illness, so they left that part out. I knew I was different than
others, but knew nothing about dying from it. So, death as not a
part of the reason I did my meds. I did them because I knew I had
to or else something bad would happen, which in my eyes was me
getting sick. Now, my therapies/meds are a part of my life that I
plan for as I would taking a shower daily. I just do it.

 

[kybert]

<div class="FTQUOTE"><begin quote>was known around 5 yrs old to lock myself in the bathroom and beg for "5 more minutes" (at least this is the story my now boss/former nurse likes to tell everyone)...but that's another story. </end quote></div>

rofl! i used to run away from my physio. i would run out of the house and down the laneway to the park. the physio and my family would be running after me. good exercise i guess lol!

 

[blackchameleon]

gday Renee, im 35 now and am really the most compliant with the
whole cf lifestyle, physio, meds, exercise, never running out of
meds, regular check ups at clinic, regular tune ups plenty of sleep
blah blah blah. i am so grateful to my parents for accepting the cf
challenge and being like clockwork with treatment, although
skipping a session for movies or the like was totally mums doing-
dad was very reluctant to ease up lest it becomes the norm!! my
teenage years saw me try to become responsible for myself- i was
absolutely non disciplined and dad ended up comng into my room (the
garage from 16!!)putting my neb on at 6.00am then give me
percussion before he and i went to work, weekends i took off!. i
was married at 20 and was pretty slack about everything but sport
which kept me ok. life changed when we had our first son and sport
ended pretty much as i had this amazing new "play toy" to
entertain me. when i was 28 my health plummeted and at 32 was
looking at  transplant. however i fought through my
depression, became RESPONSIBLE started regular exercise, and found
hypertonic saline which has enabled me to turn my life around and i
now have two boys (7 & 9) manage a motel with my wife and have
started writting and painting &and looking at my future very
positively. so after all that dribble i am in awe of my parents for
giving me the best possible start to my life however it took
becomming sh&% scared for me to comply so dilligently. cya
later renee

 

[Giggles]

My parents were very disciplined in doing my treatments. It became like, "this is what I gotta do, like brushing my teeth". I think that built a great FOUNDATION, but then I built the house so to speak. I do all my treatments all the time and then some. Yes I am not perfect all the time but pretty darn close.

I think it starts with your parents building the foundation, but the parents also have to make it fun etc. If it has negativity associated with it I think the child will not respond well or rebel.

Good luck!

Jennifer 34 years old with Cf and Cfrd

 

[Diane]

I never did any type of treatment when i was younger except take enzymes. I was healthy as a child and stayed that way till i got to be in my 20's somewhere and by that time i figured i had pft's of 100% so why try to improve upon it? Now in my parents defense, they were clueless about cf except for what the doctor told them, and he never mentioned anything about percussion. In fact he told them i would outgrow cf !! When i went in the hospital as a small child ( i dont know what for) my parents saw another cf patient getting percussion, my mom asked the doctor why they were doing that and if they were going to do that to me.... and he said " no she doesnt need that" . I didnt start doing the vest till about 4 years ago, after my second embolization . My pft's had dropped quite a bit and i decided it was time to do something about it. I am compliant now because i want to live and stay as well as i can.

 

[MommyWithCF]

My parents were very strict on having me do my meds, and therapy. My stepmom was more strict about it then my dad. I never missed a med. When I reached my teen years though, that's when I started to slack off because that was when my parents divorced and my stepmom wasn't around to push me to do them. I would only do them every once in a while, and sometimes go a couple months without them and eventually end up in the hospital. I think their mistake was when they would make me do them when I was little, my stepmom would prepare the medication every time, and would do the chest therapy for me. They didn't really put the responsibility on me to do my own meds. So when my mom left and my dad wasn't the one who was doing everything, it was just assumed that I was in the habit of doing my own meds and left at that.....Well, over the years, I've been hospitalized many times and am barely now getting into a routine of doing what I'm suppost to do.

 

[JennifersHope]

Here is a direct link from a professional journal about compliance issues with children doing the CPT.. Very interesting.


<a target=_blank class=ftalternatingbarlinklarge href="http://bmo.sagepub.com/cgi/content/abstract/11/1/75
">http://bmo.sagepub.com/cgi/content/abstract/11/1/75
</a>
Jennifer