My daughter was diagnosed with cf at birth as she had meconium ilis. She has df 508 times 2. She just turned 3 last week and is doing really well. She has never had to take antibiotics, just her enzymes with food and abdeck vitamins. I do not give her too many saturated fats ( too much fried food), instead mixed salted nuts everyday, avocados and other good fats. I also don't give her dairy as I find this very mucus forming, instead I'll give her goats cheese and soya milks. From 4 months old I started giving her organic flaxseed oil 5ml 3 times a day ( for all her essential fatty acids, omega 3,6,9 and just extra fat). Also colodial minerals 5ml a day.I think diet has alot to do with how sick you get. She has had colds like most kids do and gets a cough but gets over them in a few days. From what the doctors tell me , if a cough lasts more than 3-4 days and there's alot of coughing then you need to get a little more concerned. Most colds and flus are virus's and antibiotics can't help, it's only if it turns baterial that you need antibiotics. I try not to over worry when she gets a cold as I know this is a natural process for children and it can build up their immune system, if it progressed past a cold or flu which it hasn't yet then would be more concerned. We go to her clinic every 4 months and they are very pleased with her. She is in the top percentile for height and weight and all her chest x-rays and blood test come back fine. All the doctors say that whatever I'm doing, to keep it up.I think taking a double approach to her condition has helped, I do the medical side of everything but I also do alternative therapies.She is a healthy and very active young toodler, I take each day at a time and so far it's all been pretty good. I'd love to hear from other parents or people with cf who may have also used alternative therapies that have benefited them.
Hi there sunny! Your story sounds so much like my five month old daughter's.She also had meconium illeus, and has the same mutation combo as your tot. I too am seeking alternative therapies in addition to the CF clinic. I just posted a question about naturopathic doctors. What you had to say makes me think Im on the right track. My girl had staph in her culture last time and it really put a fire in me to seek out any possible thing that could help her. I give her water soliuble silver orally and in her nebulizer, as well as lobelia essence topically and orally. She takes acidophollus and black walnut extract. After reading your post I think we will add some more to that list! Thanks for sharing.
Hello there. I'm just registered after trawling the net for info! my daughter is 17months old and was just diagnosed with cf 3 months ago.she has df508 and c.489+1G>T. I am just starting the journey! I have used various complementary medicines with her from birth and I too, am very set on taking the two roads of medicine and natural. I'm very interested in your two posts. I give whey, minerals, colostrum daily and give vit c, echinacea & manuka honey on and off. I also have big reservations about giving the full fat dairy diet that has been recommended here. I give goats cheese and now give goats milk too. I used give soya milk until I was told that soy actually inhibit enzymes. I did a bit of research and heard this from two good sources, had you heard that at all? I also give probiotic/live yoghurt daily which could be cows or goats depending on what I can get at the time. Also have given homeopathic treatments if a little cough develops - with good effect I'm happy to say. All in all I really think its the way to go. medicine doesn't know it all, and a lot of what it does know I think is from nature anyway so I'm all for natural routes when its possible. my dd is also thankfully in good health, her lungs are clear and her appetite is good. I am struggling with the enzymes tho cos she does have up to 5 poos a day for the last 10 days or so. I have upped the dose but the poos don't seem to be tapering off. she is still putting on weight so I'm at a bit of a loss to know what to do. also, do you guys know of pulmozyne? i've just read about it tonight - I don't know if its on the market in ireland yet or maybe I just haven't had to use it ? anyway, hope you are doing well adn your little ones are in great health. it's great to have access to other parents and other countries to check on whats out there. Thanks for the posts! bye for now.
I'm so happy to hear about your cases! My son also has the df508 x2. He has ALWAYS been in great health, though I'm not happy with his doctor's who seem to treat the genotype and not the patient. They treat every patient exactly the same giving them all the entire regimind of drugs and treatments as if they were all dieing tomorrow. In fact, my son was only diagnosed because of a research of studies, none having to do with the symptoms of CF. The first Salt Cloride test came out "inconclusive for CF" then a second Salt Cloride test was done, that came out at the high end of normal, therefore they decided my son must have CF. The hospitalized him immediately and told me that my son may not live past tomorrow. I too believe the nutritional intake has a great deal to do with one's health! I firmly believe that, especially though our experiences. I'm in California, and am looking for a doctor or group of doctors for my son that will be willing to treat my son. (My son had an adverse reaction to the enziimes, causing the symptoms of the desease, so severly it caused me to do some reasearch, I've learned that the enzymes CAN give the symptoms of the underlined desease, and that even if a person is diagnosed with CF, it is most definately NOT a "Death Sentence".. contact Microbiochemist at the big universities that did or are studying CF.. there you will learn A LOT). I have learned that the CF clinic my son was going to was getting kick backs, which may be why they were pushing the drugs so hard. They put the fear of death in my head to try and get me to think that "I was going to find a cure for CF", where they contridicted themselves horribly. GENETICS plays a HUGE part in how healthy one will be with CF, and by that I mean, all the other genetic factors not just the CF Gene. Moreover, it doesn't matter that you have 2 df508 genes, it is where the effected protine on the gene is defective.. that's a bigger factor on the veriable of symptoms one might have or encurr.
JUST KEEP IN MIND.. DO YOUR RESEARCH.. CONTACT THE UNIVERSITIES AND ASK QUESTIONS OF THOSE THAT STUDY THE GENES THEMSELVES.. DOCTORS ARE ONLY SUPPOSE TO TREAT A PATIENT.. THEY CAN'T CURE THEM. MAKE SURE YOUR DOCTOR TREATS YOU OR YOUR CHILD WITH CF AS AN INDIVIDULE, AND NOT AS A 'GROUP ENTITY'.. WE ARE ALL DIFFERENT, AND THE ULTIMATE OUTCOME IS CONTIGENT ON OUR INDIVIDUAL KNOWLEDGE OF OUR OWN CONDITION. KNOWLEDGE IS POWER.
I'm so glad to hear how well your child is doing! :]
My cousin was diagnosed with CF at birth; She'll live to age 5 maybe, they said.
And then she turned 6. And they said "Well, we have some new drugs. Give her to 13."
And then she turned 14. "Well, we have some new treatment plans. Giver her to 18."
And now she's 23. She's expected to live into her 40s now.
Technology is amazing and improving rapidly; It's looking to me like your child will be expected to have a fairly normal lifestyle by the time she reaches adolescence. Where my cousin used to be on a strict dieting plan and constantly sick (to the point where she could no longer go to college), she's now rebounding into a fairly static lifestyle with fewer dietary limitations.
Anything is possible.
Best of luck in all life throws at you!
Thank you Punkysmom for all of the important info. I love moms who do their research and share it. Sometimes it feels like there is just too much to try and find out and knowing where to start... I couldnt agree with you more, knowledge is power!
I also have a question, do any of you think that staying in a warmer climate during the winter is a wise thing to do? My husband and I have been talking about it. I have been trying to find out where the best place would be to go. Im sure near the ocean would be good. I would love some input, I dont want to do it unless it really would be best.
You're very welcome! I live in Huntington Beach, CA. I think the best thing isn't necessarily living here as much as it helps allowing your son/daughter to be in the sun. Just an example: when my son has or had a cold, I take him for walks in the sun, regardless of how cold it is. I bundle him up and we go for about a 30 minute walk each day until his cold clears up. Generally it only takes a day or two until the cold is gone, and the runny nose clears. I like having his own ammune system work for itself whenever possible. Again, my son has been in pretty great health and as my peditrition has said "whatever you are doing, you are doing a great job so keep it up". I'm not so sure whether I'm doing a great job, or it could just be his own genetics involved in his amount of symptoms, or lack of.
Hi all and thanks too for the info - always great to find out more. i also wondered about a warmer winter climate - Irish winter weather is dire - rain, damp, cold and people are constantly with colds or flu. we too, have been discussing the possibility of being in a warmer climate around january to march say. I am increasingly feeling that genetics plays its role too and that makes perfect sense to me. I also wanted to ask what anybody else feels about their child being about others with colds flu etc. Our daughter was diagnosed in March so we are still quite new to this, but my instinct is to keep her away from anybody that I know has a cold. sometimes tho I wonder am I doing the right thing - presumably she has to be around people throughout her life who aren't always in full health - so do I try to build her up as much as possible now and fight those fights later on when they arise or do I be a bit more relaxed about it now and let her fight her immune system up herself? My own feeling is always to avoid and I don't think I'll be able to stop that at least until she's a bit sturdier but I'd love to know how other moms and dads feel bout these kind of things.
We live further north and while our summers are usually nice/hot! Winters can be brutal. DS daycare has the children go out and play during the winter months in the snow if it's not too cold, go for walks, sledding. They get fresh air and aren't as apt to be cooped up inside spreading each other's germs.
Hey Punkysmom, you certainly have delved into a few other worlds. thanks for your information. I'm grateful for your insights. its always good to be aware and in control and to have yourself heard when you feel there is something to be known. I have also disagreed and questioned my docs along the way and will continue to do so when I feel it is appropriate. plus I think we all tend to do our own research as you say, when your child is vulnerable you'll be like a she wolf ready to pounce. good luck to you along your path!
THANK YOU IRISHMOM, you have NO IDEA how much your nice encouraging words of validation are inspiring to me. Thank you! It has been a trying time, but in the quest for my child, research seems to be the only avenue I have left. I'm glad to hear that there is other moms (and/or dads too, don't want to leave them out) that think like I do. Too often I've seen people look at their doctos as "gods" and regardless of the words coming out of the doctos mouths, they think they are "final" and always "true". But people forget they are doctors, not scientists. Even the Cystic Fibrosis Foundation has told me personally, that the doctors work in the clinics and that it is their "choice" on how to treat the patients, they only guide them in knowing what CF is, not with treatment. Which is a short explanation as to why so many doctors are different in their views. We can only HOPE to find doctors that are willing to put their patients before any of their own interests, and treat them as Human Beings and individules. Not always the case. Doctors should be used as a "tool" in the care of our children, not a "god" .. remember they can't CURE anyone.. just "treat" them. I'm happy to know you understand and share my view too. It's good to see that not everyone just "conforms", because not in every case are the doctors always right!!!