<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SHUZEN</b></i>
I have a daughter 6years old and a Son not yet 1years old...both have CF, I rarely give them sweet things, although the specialist recommend it! Fruit is best, however, a little bit of candy/chocolate can go a long way!
There are people who say that people/children/infants suffering Cystic Fibrosis don't need to wear a "mouth shield" (MASK) however, I have discovered that it is appropriate to do so, even around parents/relatives/ (everyone) during continual close contact!
To avoid too many stays in hospital/s, the environment surrounding the CF sufferer must be kept as clean as possible (kill germs)
At least 2~3 times per week, use a mop soaked in "bleach ratio 20%" to clean the home floors (especially the bathroom, which is the major cause of prolonged CF suffering ! The bathroom+Toilet should be kept as clean as the dishes You eat from! Note! A home with "carpeted floors" and/or too much cloth, such as curtains, clothing lying around, books, paper etc will also contribute to "Suffering"!
"Water" never drink tap/faucet water...buy by bulk mineral water that has been approved by governmental bodies to be safe!
CF people/children need extra attention in every way!
Their immune system not only depends on the "drugs" prescribed to them but also on their/self own ability to participate with-in society while taking all precautions at the same time! (try to hide your precautions so as to not insult the ignorant who maybe will be there for You?)!
Exercise at least twice a week! (mild exercise preferred)
Try to prevent any negativity to Yourself/child/infant etc.
REMEMBER THIS! It is not Your fault or Your parents fault that You or Your Child etc has CF!
Hopefully, when Governments get their "act together" then their will quickly be found a cure for CF but not "WAR"</end quote></div>
Hi SHUZEN, welcome to the CF site!
It was brought to my attention that you seem to have a method of treating CF patients (like your two daughters) in a method that seems to resemble Eastern Medicine by natural means of prevention, rather than the methods used by Western Medicine, which seems to be giving a medicine for every ailement.
Though I had drank tap water for a long time, only recently my wife has been giving me filtered water, which was more for the benefit of taste and filtering the treatment chemicals in the water, rather than the added bacterias.
My mother had often stressed that I get involved with doing some form of excercise, and I had done well with that.
Also, at one point in my adult life, my mom had expressed the idea that she and my dad understood that my CF was neither of their faults, so they didn't dread on that.
However, because I was frequently sick in my younger years, I had more attention than my siblings, which may had actually caused a bit of a delay in maturity due to the sheltering that a mother will naturally do. However, going out on my own, I seemed to have caught up a bit.
So as not to "derail" this post, I would like to add my comments to elise.
Hi elise, welcome to the forum.
I'm guessing that the number 61 is related to the ratio of salt in the sweat test. It would be a good question to bring up to the doctors when you go in for a test.
As for what you may expect, I'm going by my memory recollection of when I was about seven, as well as what most doctors want to know in general in relation to CF.
At four and a half, the doc may order breathing tests to see what kind of lung function your daughter has. The biggest concern is what is called the "FET1", which if you look for the user name of "lightNlife", she has a blog which can further explain that information.
Another thing the doc may ask, is whether your daughter has any colds or such in the past few months. He may ask if she has any allergies, since it seems that allergies are frequent for CF'rs, at least for me. The doc may also order a throat culture to see what kind of infections your daughter is currently fighting, and he will probably start her off on oral antibiotics to fight off the infections.
Also, and perhaps last, he will also ask questions regarding her digestion. How many times in a day does she have to use the bathroom, and may ask you if you had observed the formation of her bowels...this indicates how severe her pancrease is in secreting enzymes to help digest foods. Based on the information, he will be prescribing enzymes. If a CF patient goes too long without enzymes, they may become malnurished and that can lead to other complications, like the body being able to be strong enough to fight off the lung infections.
Last, depending (sorry, I said there was one last thing, but this should be the last thing to expect from the doc) on your daughter's lung activity, he may prescribe aeresol treatments to loosten the mucous in her lungs, and some sort of respiratory therapy to knock that stuff out of her lungs.
I hope this has helped a lot! Hope the doctor visit goes well, and is very informative!
