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As adults, what advice can you give?

anonymous

New member
to a parent with a 5 year old boy with CF DF508? Not that mutation, specifically, but CF in general. I am posting here to hopefully tap into some erstwhile adult knowledge and experience.

I know that my question is almost annoyingly vague, but I am just hoping to get some interesting pointers......creative ways to avoid germs? Great high calorie foods? etc.

FYI, our Ryan has been very healthy for his first 5 years, and I am going to try like crazy to keep him that way!

Many, many thanks to any responses!

Dan
Father of Ryan w/CF
Megan w/o CF
 

Faust

New member
Be very vigilant with his care, and make sure he understands that as long as he does all of his care, as often as he should (and at times more than whats recommended, like the vest, etc), he can live to be a very healthy person, for quite a long time. Stress that to him all the time, that it isn't a death sentence, and if he acts properly, he controls his destiny down the road. That old saying about an ounce of prevention is sooooo true with regards to cf. Diet and proper supplements (due to our malabsorption) are important also. You want him to thrive later on, and not be sickly.
 

stevehof

New member
A physically active lifestyle will surely help. Also, my parents made sure I learned to play a musical instrument. Preferably an instrument that requires 'blowing' through, like a woodwind or brass. I think that helped me quite a bit. My FEV1 was over 130% at one point in my childhood. Make sure your son understands the importance of personal hygiene and hand washing. Discourage your son from spending time with friends who have 'colds'. Chest physiotherapy is a good thing especially if your son turns out to be not interested in or capable of vigorous daily exercise. It's all about airway clearance and good nutrition.
 

anonymous

New member
To reinforce what Steve just said, physical activity is a must. I think that will do so much good to keep his lungs in good shape.
Also, with me, my parents made sure I ate a lot as a child and that just carried over into my adult life too and it doesn't seem like an such an 'effort' to have to eat more than everyone else.
I'm glad his first 5 years have been good and I hope that will carry on for many, many years to come!
 

JazzysMom

New member
When we think of kids with CF we think of colds etc. My daughter (non CF) had weird stuff in her first few years of school like Pin Worms, Intestinal Bacteria & Herpes of the Mouth. All of these are very contagious & are transmitted hand to mouth which is easily controlled with hand washing. So its shows how much hand washing can help all around. Balanced diet, enough sleep, activity & hygiene is the key to anyone's health. I find for myself that a routine is a big help also. That is just me & actually my daughter. You are doing something right so far. Just step it up a notch since your childs interaction is likely to increase.
 

thelizardqueen

New member
As far as weight gain goes, I can suggest Scandi Shake. I've tried all of the meal supplements, and find that this one tastes the best. As far as contagious things, all I can say is be very careful when it comes to having your child around someone that's sick. Don't be afraid to turn down invites, or tell people you don't want them near your child when they are sick. My mum did that - and I'm very healthy for it - haven't been in hospital since I was 16, and only have minor chest infections. None of those bad bugs either.
 

Emily65Roses

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>SeanDavis</b></i><br>Be very vigilant with his care, and make sure he understands that as long as he does all of his care, as often as he should (and at times more than whats recommended, like the vest, etc), he can live to be a very healthy person, for quite a long time. Stress that to him all the time, that it isn't a death sentence, and if he acts properly, he controls his destiny down the road. <hr></blockquote>

Overall this is true, and absolutely stress it to your child. But keep this in mind please: if your child is very vigilant with meds and treatments and still doesn't fair too well (not saying he will, just saying if), it is NOT his fault. I know plenty CFers that were good with their meds and treatments and still didn't last too long before needing major care, or a tx. So yes you can help your own health, but if for whatever reason, it doesn't work... Don't blame the child, or let the child blame himself.
 

Allie

New member
I have lots and lots of high calorie, delicious recipes, if you want some, just email me.


AS far as everything else, I'd say let them be as normal as possible, carry hand sanitizer, and hope for the best. Everyone else has given great advicce, I'm sure you'll do fine.
 

Faust

New member
You can of course aid your child with a very good probiotic bacterial supplement. You can also give the child a good overall enzyme supplement (available all over the place) besides what he normally takes for his meals. Remember, while he grows up, his biggest crutch will be malabsorption. If you can give him added bonuses to take it nutrients from his intake, do so. It can do nothing but help him in the long run.
 

anonymous

New member
Allie,

How do I get your e-mail address? I am new the board and not sure where to find it....

FYI, mine is dflaharty@sbcglobal.net.

Thanks Allie!

DF
 

JazzysMom

New member
If you go under search & put in her name it will bring up posts that she has responded to or just find one that she responded to or posted & click on her name. That will bring up her profile with email info etc
 

Bengalsfan

New member
I was born wiht cf and now 30 years old. Not know your little one he maybe be like I was and just was healthy for the longest time and ate good and stayed good with my weight. As I got older calories were of coarse important and after my first hospitalization at the age of 21 I was asked to drink insure plus. And there is always which you've probly have seen the packets of calories you can add to like glasses of Tea or milk shakes. He is lucky to have someone like you who cares about his ilness some babies have there parents give up. take it easy good luck
Jeremy A from Illinois
 

cdale613

New member
Hi Dan,

As many have mentioned, keeping him as active as possible will do him wonders... my parents signed me up for all kinds of sports... swimming, soccer, basketball, ice skating lessons, cross country skiing, etc. Don't be afraid to send him out if it isn't a perfectly sunny, bright 70 degree day... but do make sure that he is appropriately bundled up for the weather, and if he gets wet from rain/snow, get him dry quickly.

I think that living with CF is all about balance. You cannot kill every germ in your house, or protect him from every germ at school. At the same time, he needs to wash his hands, and dress warmly when its cold, and do the little things that help keep him healthy.

Nutrition is important... I could not imagine getting a five year old to drink a scandi-shake every day... they taste terrible... I can barely put them down now. However, you can make sure that he gets a CF healthly diet that is high in protein, etc. I'd recommend lots of ice cream, and cooking with butter.

Another key recommendation that hasn't been mentioned is chest physical therapy. If your son isn't already doing airway clearance, I'd recommend talking to his dr. about it. CPT is preventative - it will keep mucous moving, preventing plugs from developing which lead to compromised lung function and infection. Any airway clearance technique is better than nothing.

Here's why I like Chest PT:

1) I find the vest ineffective compared to chest pt.... I know that others like the vest, this is just my personal experience.

2) Breathing devices - the acapella/ flutter/ etc. do not do enough to help the smallest airways. These are also the hardest to keep clear... Chest PT wins.

3) I know that my dad benefitted greatly from doing chest pt. It was the major tangible, daily activity that he could do for me to help me fight CF. Doing this helped him deal with any anger/ guilt/ etc. issues he has experienced as a CF parent, and brought us closer together. My dad and I did chest pt from when I was 7 until I left for college at 18. (he still does it whenever I'm home for holidays, etc.) I don't think a lot of 13-17 year olds spend 50 minutes a day with their dads. Chest PT made us spend this time together.

4) Doing chest PT (or the vest) every day, even when he is healthy, will get him into a routine of care while he is young. Even if he doesn't have to start taking nebulized treatments for several years, having a time of day set aside for "CF stuff" it will make it easier for him to comply with his treatment schedule.

Finally, as parents, you are your child's best advocate. Learn as much as you can about CF. Do not be afraid to question Dr.'s. Do not be afraid to change Dr's if you feel they are not treating your son's CF as an individual case, independent of every other patient. Do not acquiesce to Dr.'s orders without learning the benefits, the risks, and the alternatives. For example... my family moved from VT to upstate NY - at my first visit to the new clinic (I was 7 at the time), the Dr. told my mother that I needed IV's. My PFT's were in the 100's, and I wasn't culturing anything. When asked why I needed this treatment, the Dr. responded "we give all our CF patients at least one course of IV's every year." Now... there are lots of opinions about how aggressive CF treatment should be, and I'm not taking any sides, but my mother was not a subscriber to this ultra agressive theory. She took a stand, and did what she thought was right - We left the clinic, and for the next 10 years, made the 6 hour drive back and forth to the VT clinic for the next 8 years, until there was a staffing change locally.

As your son gets older, you will have to help him learn how to take responsibility for his care. I don't know how my parents did this, but I do know that I grew up knowing that my CF treatments were not optional, and that the only way to have a life that was "as normal as possible" was to do my treatments.

Anyway, just a few thoughts... sorry for the long post.

Chris

25 w/ CF
 

littledebbie

New member
Encourage him to live his life don't let CF define him or your family. Expect big things for him dream big for him, if you believe there's nothing too big for him to attempt there won't be. It's not always about succeeding but about having tried. There is a fine balance between fighting for life and living your life. We don't want to forget to enjoy, experience...smell the roses, enjoy your son <img src="i/expressions/face-icon-small-smile.gif" border="0"> For me the key thing to keep in mind is weight and breathing go together if one goes down the other is sure to follow so be diligent in being in tune with both when things start to take a turn the faster you recognize it and go on the offensive the better.
 

serendipity730

New member
I didn't read everyone's posts, but I suspect my advice is going to be of a different sort.
1) Let him be a kid, he will be around friends with colds, it's inevitable. If you make him feel really different from other kids, he is more likely to go through a stage of rebellion. I know that as a parent you want to protect him from every germ, but it isn't possible - don't feel like a failure when he gets a cold
2) Be honest with him about CF. When he asks about it, tell him the truth (within reason.)
3) Don't be afraid throughout his childhood to check in with him and ask him how he is dealing with this. I wish someone had asked me.
4) Promote his autonomy in regards to his care by the time he's an adolescent.
5) Don't let him get away with skipping vest, treatments, etc. it will only lead to bad habits that he will keep.
6) I have been doing IV medications at home since I was 9. I hightly recommend it. It shortens hospital stays, which shortens exposure to resistant bugs.
7) Make him exercise and stress the importance of exercise. I would also like to pass along some advice my parents received when I was a baby - he's your child, at some point you are going to need to remind a doctor of this. Unfortunately, some doctors forget there is a person behind the disease, it is always your job to remind them. If not, who will?
I'm a double deltaF508. My pft's are pretty good for a young adult, and I like to think I have a lot to do with that. Good habits, as well as bad ones, start in childhood.
Good luck! Ryan is already ahead of the game, having parents who care deeply about his health.
 

anonymous

New member
Exercise and lead a very active life. (Stevehof and others).

Stay away from those that are sick and coughing (our society nolonger teaches anyone to cover their mouth when coughing).

Stay up on research and be compliant with meds. etc.

Live a full and stimulating life.

Luck.

CF 55 TX cepacia
 

anonymous

New member
Hey Dan,

Just another tip, remember:
High calorie foods are not always healthy foods.
You can give your son a bag of potato chips and he'll eat the whole thing, but that's not neccesarily healthy.
Remember:High Calorie, but Healthy Calorie.
You don't want to clog his heart...his lungs need his heart to stay clean!
I speak from experience. I'm not saying that he shouldn't eat all those fun, junky foods. But I've come across some docs who just push any and all high cal fatty foods, and that's not good either.
Best to you, keep up with your research,

Christian
 

anonymous

New member
Thanks Christian! I am also very concerned about this food issue. Starchy foods with simple carbs also lead to diabetes, which is a potential double whammy that I am going to really try to stave off..... We give him no soft drinks, and make hum guzzle down whole milk ;-) He loves it! We're so lucky!!!

Thanks again.
Dan
 

anonymous

New member
hey just thought I would show you a really interesting post which I recently read on another forum about fats and cholesterol.

"I did a search for coronary heart disease and CF, and though I found many sites that listed both diseases, I could not in the time available find one that referred to them in combination. The simple fact is that very few pwcf have lived long enough for CHD to show itself.

This brings up a rather harsh point. My generation of PWCF (I am 43) are almost extinct - for many reasons, but a big one of them was the necessity of having a low-fat diet. (There were no decent enzyme capsules at the time.) You can protect against CF, or you can run scared of CHD - and the CF will kill far sooner than CHD. The high-energy, high-fat diet is too important a tool in care of CF to compromise it! Pwcf who have weight at the 75th centile will have better lung function, fewer infectious episodes, and recover their lung function faster and more fully following infections than those at the 50th; and do much better than those at the 25th.

Many pwcf have remarkably, sometimes dangerously low cholesterol levels, to the point where some of us have difficulty manufacturing essential steroid hormones - and that includes the sex hormones, many growth and development hormones, the entire range of anti-inflammatory and regulatory hormones produced by the kidneys and adrenal glands; and many others.

And those who have poor lung function can suffer an even more serious heart problem than CHD: Cor Pulmonale - a condition where the part of the heart that pumps blood through the lungs starts to give out due to the back pressure caused by the chronic lung inflammation. At the same time, the rising blood pressure causes the lungs to harden further, causing more back pressure in a slow, descending spiral.

CF does not protect against other diseases. (Case in point - I suffered a non-CHD heart problem eleven years ago. It may have been either due to viral infection or childhood malnutrition or a combination of the two. The doctors didn't want to do a biopsy to determine the cause as the treatment is the same!)

However: The immune systems of pwcf are highly overactive, and the immune system is GREEDY for fats.

Also, there is increasing evidence that coronary heart disease is at least as likely to be due to silent bacterial infection as it is to bad cholesterol levels. The bacteria thought to be involved are all highly sensitive to the sorts of antibiotics that pwcf are stuffed with from infancy.

So this may actually be a case where having CF indirectly protects?

Finally, babies under 5 burn fat far faster than an adult. Indeed, at rest a two-year-old's growing brain burns AS MUCH fat as an adult's entire resting body. And that's the brain alone, the rest of the body is also greedy for fat. Healthy eating for a toddler is not the same as that for an adult."
<i>Text</i>

I just thought it was an interesting (well researched) opinion, incase that helps aleviate some of the worry people have about high fat diets <img src="i/expressions/face-icon-small-smile.gif" border="0">

And best of luck to you, you are obviously a very caring parent who is searching for answers to do the best for your child...let your child live a full, active and happy life, thats about all the advice I can give <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
I agree with what many others have said...just going to add what has also worked for me...and what I have seen as a possible hinderance for others.
For me..I was always doing something active growing up. My dad encouraged me..but didn't force anything on me..he never has. Another important thing is he treated me like a normal kid..if I start coughing it didn't run over to see if I was ok..just let me deal with it on my own...and if I needed help I would ask. If your son asks a lot of questions...answer them..and be honest. But I think that also means sharing with him the positive and negative things.
I noticed 2 things at CF conferences...that I was extremely happy not to be part of. First, don't get excited about "finding a cure" talk...if it comes..great...but don't get your hopes up. I spoke to a lot of people that were wondering if a cure would be found that year, or that summer, etc. All this does is lead to disappointment. If you don't get your hopes up..just keep doing your treatments and taking your pills everyday...you are much better off.
The other thing I noticed was a lot of "why me" stuff. I hear that a lot from patients as well as parents. I feel bad for anyone who thinks that way...deal with the cards you were dealt and make the most of life. Easier said than done I know...but if you constantly talk about your problems you won't be very fun to be around..and may find yourself alone more often than not.
Just my take on things...
 
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