My son was diagnosed with CF at 10 months old.. he was automatically put on enzimes and albuteral. He had no symptoms, and still doesn't. He started getting severe tummy aches, diareah and oil bubbles in the toilet. I tried several different ways of giving him the enzimes,, from the Creon to the Ultrese, tried 1, then up to 4 with each food.. for 3 years I've tried the enzimes several different ways, several different times.. several different doses, nothing seem to chance the facts. Finally in May I took him off of them after I did a little independant research of my own. I called several Universities and questioned what they were made of, you know that long list that comes with the prescrition.. I went through each thing, I wanted to know what they were EXACTALLY. One ingredeant is a diaretic. I had many questions, I was also told by my pharmasist that the enzimes GIVE oily poop. I couldn't understand why I would be putting this into his body, if I was trying to help him to gain weight. It took about 5 months for his stools to START to become normal again, he started having formed stools that sunk in the toilet, and less and less oil with each passing month not to mention his poop is now turning brown. My oldest son (not CF) got sick a few weeks ago, and my little guy caught it, I took him to the hospital where the CF team is, because I felt they had his best interest at heart, however I question it now. They think I am lieing about his symptoms, and are threatening to take him away from me if I don't proceed to give him the enzimes. I'm not saying that they are not needed in the treatment for CF, I'm just saying I'm confused and don't understand. I think EVERYONE with CF or a child with CF should research it for themselves. Albuteral makes anyone who takes it, caugh. Thats what it's suppose to do. weather or not they need it. But if Albuteral makes them caugh, and the enzimes (which also helps them to loose their appitite) helps them to secreat oils, fat, gives stomache aches... if the meds give the symptoms of CF.. ?? If the enzimes make you loose the fat/oils of course they are going to tell you to eat lots of fatty foods it will only help you to secrete more oils. I don't get it.. I just wonder If CF was Anthrax and threatened the White House.. would there have been a cure or antidote already?? I was told by a Respritory Theropist that Cystic Fibrosis is a very large Financial orginization, and he has 'seen things'. If people die, and especially little people, just think how much money can pour into an orginization. .. Take Cancer - How many people would be out of jobs, how many Cancer Centers, Oncologists, pharmisuitical companies ... if Cancer was cured. I'm not saying CF isn't real, I have to admit, I don't understand alot about it, even though I have done much research, but it's only 2 genes in the entire body.. the rest of the 98 percent isn't the same as the other guy with CF. .. Please forgive me, I'm not trying to make anyone angry! I like everyone else want to save the life of a loved one. Look up Albuteral.. the actual elements of it.. Look up the Enzimes... each and ever element of it.. call a Microbiochemest at a repritable University.. I think as people with CF we need to educate ourselves more about perhaps just the genetics itself. (I by no means am an athority, I would like answers too) My son has never had any symptoms until he started taking the meds. Please feel free to email me, perhaps I could learn more from you... amiablyme@yahoo.com
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Enzimes??? Do you know what they are REALLY?
- Thread starter anonymous
- Start date
Enzymes are used to "digest" the fat in the food. Normally, when there is a presence of fatty or oily stools it is because they haven't been on the correct amount or brand of enzyme. Example, if I switch to a generic medication rather than the ultrase I use I have the same symptoms as your little one. As for the albuterol, it does not make you cough. It is a bronchodilator used to "open" up your lungs. Albuterol does encourage expectoration of secretions and that is a good thing. I find it hard to believe the doctors just put your son on these meds without a reason. After all, he must have had some symptoms or they would not have tested him for CF.
I encourage you to go to a reputable CF university and doctor. If you post the area you are from I am sure someone will tell you a good doc.
Finally, I don’t mean to chastise you but I really think you need to talk to a professional. Your thoughts of conspiracy theories are scary and my blurb on this web site will not fix that. Cystic Fibrosis is an incurable but treatable GENETIC disease that thousands and millions of intelligent people are working delinquently to cure. This disease is not a communicable disease like anthrax and would never be treated as such. But...the strides made in genetics in the last 20 years are tremendous. I know that it is hard to understand that a flaw not allowing chloride to move in and out of a cell can cause all of this, but is does. Ma’am I encourage you to educate yourself for your child’s sake because frankly as a child advocate your position on your child’s welfare scares the hell out of me.
I will pray for you and your son
luke, 29 living with CF and a loving wife by my side
I encourage you to go to a reputable CF university and doctor. If you post the area you are from I am sure someone will tell you a good doc.
Finally, I don’t mean to chastise you but I really think you need to talk to a professional. Your thoughts of conspiracy theories are scary and my blurb on this web site will not fix that. Cystic Fibrosis is an incurable but treatable GENETIC disease that thousands and millions of intelligent people are working delinquently to cure. This disease is not a communicable disease like anthrax and would never be treated as such. But...the strides made in genetics in the last 20 years are tremendous. I know that it is hard to understand that a flaw not allowing chloride to move in and out of a cell can cause all of this, but is does. Ma’am I encourage you to educate yourself for your child’s sake because frankly as a child advocate your position on your child’s welfare scares the hell out of me.
I will pray for you and your son
luke, 29 living with CF and a loving wife by my side
Mockingbird
New member
Nobody reply to the E-mail. I have a feeling this is something made up, just to make people angry. If you reply to the E-mail, it would be satisfying to send a hatefful message =-) But then the person (whoever she is) would have your e-mail address. I'm not sure what she would do with it, but just to be on the safe side... Anyway, I reported it to the moderator. Thake care, everyone.
Jarod
Jarod
Emily65Roses
New member
I agree with Jarod, but I have to put in a quick two cents. Any CF meds that make you cough, do so for a purpose. They're trying to get you to cough so that you can get rid of the crap in your lungs. It makes perfect sense.
Yes if the mucus stays in the lungs it jsut sits there and grows nasty bacteria, causes infections and then evintually scars the lungs. Thats what the vest is for and any CPT...
Now if you son didnt start having symptoms till he took the meds, was it you were looking for them (symptoms)? How was he diagnosed if he didnt have any symptoms to begin with....not trying to make you mad by any means just trying to figure something out. For example if it was a routine test and they decided to put him on meds as a precaution, could you have read up on CF (even after a diagnoses from a non routine test) and saw the symptoms and it happened to be at the same time as he started meds? Also I know children under one year of age always have odd poop, it seems to change month to month almost. And children with cf under about 3 years more so under 1, their tiny tummies change so much that its hard to see how much or what kind of enzyme they need. Sometimes cf patients dont need enzymes....but any professional will tell you if its loose and greasy poop its because the fats and oils are not being aborbed in the stomach, the natural enzymes (even the kind we take) are not enough or not work properly to help us absorb it. Usually to much enzymes either do nothing or may make you consitpated but its usually odd to make you have diariha or oily poops (not saying its impossible). As for albuterol....yes it opens the airways, sometimes by opening them it loosens the junk and makes you cough but its a good thing. You want that junk out...now sometimes albuterol can make you feel shaky or have a increased heart beat, if that happens there are alternate broncodialters or you are told to dilute albuterol.
You know that most enzymes are made up of pig intestines and pig enzymes right? not all chemicals....all natural pig guts..lol...seriously the enzymes come from pigs.
Are you going to a acredited cf clinic? Sometimes if they are specialist in cf they just give you a list of meds to take because thats the "norm" of what other cf patients take and not necessarily what that certain patient needs. If there is another CF clinic close to you I would go there if they think you are lieing....or push the current one for tests, show them a diaper with the oily stools....or pictures...something to prove you are not lieing and they need to test (they can take stool samples) to see if he needs the enzymes...they can do this different ways but the one i know of is you take the enzymes for a few days and give a stool sample then take no enzymes for a few days and give a stool sample....it shows what is or is not being absorbed....it may be just the one with no enzymes not both...not really sure.
Now if you son didnt start having symptoms till he took the meds, was it you were looking for them (symptoms)? How was he diagnosed if he didnt have any symptoms to begin with....not trying to make you mad by any means just trying to figure something out. For example if it was a routine test and they decided to put him on meds as a precaution, could you have read up on CF (even after a diagnoses from a non routine test) and saw the symptoms and it happened to be at the same time as he started meds? Also I know children under one year of age always have odd poop, it seems to change month to month almost. And children with cf under about 3 years more so under 1, their tiny tummies change so much that its hard to see how much or what kind of enzyme they need. Sometimes cf patients dont need enzymes....but any professional will tell you if its loose and greasy poop its because the fats and oils are not being aborbed in the stomach, the natural enzymes (even the kind we take) are not enough or not work properly to help us absorb it. Usually to much enzymes either do nothing or may make you consitpated but its usually odd to make you have diariha or oily poops (not saying its impossible). As for albuterol....yes it opens the airways, sometimes by opening them it loosens the junk and makes you cough but its a good thing. You want that junk out...now sometimes albuterol can make you feel shaky or have a increased heart beat, if that happens there are alternate broncodialters or you are told to dilute albuterol.
You know that most enzymes are made up of pig intestines and pig enzymes right? not all chemicals....all natural pig guts..lol...seriously the enzymes come from pigs.
Are you going to a acredited cf clinic? Sometimes if they are specialist in cf they just give you a list of meds to take because thats the "norm" of what other cf patients take and not necessarily what that certain patient needs. If there is another CF clinic close to you I would go there if they think you are lieing....or push the current one for tests, show them a diaper with the oily stools....or pictures...something to prove you are not lieing and they need to test (they can take stool samples) to see if he needs the enzymes...they can do this different ways but the one i know of is you take the enzymes for a few days and give a stool sample then take no enzymes for a few days and give a stool sample....it shows what is or is not being absorbed....it may be just the one with no enzymes not both...not really sure.
NoDayButToday
New member
<blockquote>Quote<br><hr>. You want that junk out...now sometimes albuterol can make you feel shaky or have a increased heart beat, if that happens there are alternate broncodialters or you are told to dilute albuterol. <hr></blockquote>
Sort of irrelevent, but if Albuterol makes you shaky and keeps you up after your evening nebs, you could always ask for Xoponex (levalbuteral HCI), it's the same as albuterol, but without the shakiness/racing heart effects.
Sort of irrelevent, but if Albuterol makes you shaky and keeps you up after your evening nebs, you could always ask for Xoponex (levalbuteral HCI), it's the same as albuterol, but without the shakiness/racing heart effects.
EmilysMini
New member
yah...it just sounds like your just being perinoid. i seriously doubt that of the conspircies or whatever out there, that this is anywhere close to one of them.