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forsaxon
04-26-2005, 08:50 AM
Hi, I am new to this website as our wee baby boy was just diagnosed with CF a week ago. Since we have gotten over our grieving & shock, we have been madly trying to educate ourselves on this disease. One thing I was hoping if someone could share, is if they have had any sucess with alternative treatments in conjunction with what is medically done for CF. We are looking at every avenue we can that will assist in his quality of life & would be really interested to hear if something is working well for someone.
Thanking you
Donna

anonymous
04-26-2005, 10:54 AM
Some people have luck with curcumin or glutathione. Neither are approved treatments but both are being studied. Not sure about using them in an infant though!

anonymous
04-26-2005, 02:42 PM
Hi, there is a website www.sharktank.org that you might find helpful. Also there is a messageboard through yahoo called CF Nutrition, there is a wealth of info there!

Good Luck!
Kelli (mom of Sydney 22 months wcf)

forsaxon
04-29-2005, 03:17 AM
<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for this I appreciate it.

I am still interested to hear if anyone is using therapies such as Bowen, Acupuncture, Naturopathic or Homeopathic remedies etc that are working for them as a preventative measure &/or when required.

Thanks Donna
Bub 6 wks old wcf

anonymous
04-29-2005, 12:30 PM
I am trying Mannatech products for my daughter, who is 3. They help to keep infection away. Email me at [email protected] for more information. I also give her flax seed oil in yogurt to reduce inflammation, or prevent it.

Jen
mom to Maya
3.5 with CF

serendipity730
04-30-2005, 02:12 PM
I would imagine that anything that would boost immunity or prevent colds would be helpful.

anonymous
05-03-2005, 06:00 PM
We took our daughter to a naturopath. Among other things, the doctor prescribed plant enzymes. She said they work more effectively than pancreatic enzymes because they work in all parts of the digestive system, not just in the intestines, and have no negative side effects. She said the research showed that digestive stress and problems will decrease the overall effectiveness of the bodies immune system, so she said it was important to counteract digestive problems with the plant enzymes. I checked the research she cited, though, and it was based on a single study nearly 100 years old. Our CF doctor did not want us to use the plant enzymes for fear it would result in a total enzyme dose that was too high. DOes anyone have any information on this?? I can understand that plant enzymes might be helpful in people who don't have CF, because it helps digest all the garbage we eat. But is it appropriate as a supplement for CF treatment?

anonymous
05-03-2005, 06:22 PM
Any natural/alternative treatments you try should be in conjunction with your normal regimen and approved by your Dr. Substituting any treatment is potentially harmful to your child. Do you want to take that risk?

HollyCatheryn
05-11-2005, 06:25 PM
I have recently begun seeing a homeopath and have been very pleased at his approach. He looked at the list of my medications and therapies and did not feel that any of them would affect homeopathic remedies or vice versa. I am new to homeopathy and so I don't have a lot of backgroud to share, but if you have specific questions I'd be happy to answer. I personally think it is naiive and even arrogant to think that only Western-type, compartmentalized, conventional&nbsp;medicine can help a person with CF. I have had good results with a chiropractor also. The nice thing about homeopathy, as I understand it, is that there are no adverse side-effects. Either the remedy is the right one for you and stimulates a corrective reaction in your body or nothing happens at all. Mind you, I am new to this medicine. I'd say to check it out. I would not just throw the baby out with the bathwater where either Western medcines, therapies and antibiotics are concerned or where alternative methods are concerned. Try them out. Interview people who have used these practitioners or therapies (whether&nbsp;conventional or alternative) and observe your child. You know your child better than any practitioner ever will. You know what your baby is trying to tell you. I have also had wonderful results with Reliv. I am healthier now at almost 26 than I ever remember being and I believe it is because my body is finally getting the balance of nutrients it needs in a form that I can use. Again, I am happy to elaborate on any of these things either here on the boards or on email (<A href="mailto:[email protected]">[email protected]</A>). I have&nbsp;recorded my experience taking Reliv on my website at <A href="http://www.geocities.com/MurrensNatureMama/Reliv">www.geocities.com/MurrensNatureMama/Reliv</A>. You never know if a therapy can help you until you actually give it a try. Do some research and make sure that you choose a practitioner who is credible. I also found that insurance would reimburse some portion of many things out of the usual spectrum of care. I figure why settle for good health if my health can be great!

anonymous
05-16-2005, 12:13 AM
Hi,

My son is almost 11 months old and we have been using homeopathy since before he was diagnosed at 4 months old. Once we had a diagnosis it did seem to help our homeopath tailor a specific remedy to his needs. I had been using homeopathy for many years before my children for a variety of reasons from infertility to ovarian cysts to just a severe cold/flu. I highly recommend it and now that we have a baby with CF I see wonderful results already.

I can't stress enough the importance of finding a qualified homeopath. I was fortunate to start with my homeopath prior to having my children. Even though he moved out of state to start a new practice, he continued to see patients via phone appointments. I have found the phone appointments to be just as effective as office visits. However, if you have a qualified homeopathic practice nearby, you would more than likely prefer face-to-face visits.

Homeopathy is very much tailored to the indivdual so no one CF baby/child will likely be on the same remedy. Our son's remedy works to help him move his mucus (especially during colds) and seems to strengthen him in general. As we go further with his treatment we will be more sure what it is doing for him and if perhaps certain vitamins (GSH, in particular) may help fill in the cracks (if their are any). I'm sure others do a combination but this is just our approach since he is doing well at this time. I do fully believe that homeopathy has the potential for helping the CF body function as if it doesn't have CF. This is just my personal opinion, there is no current research that directly supports this statement.

A great book to read if you want to know more is the Science of Homeopathy by George Vithoulkas (it is a bit heady but gives a great discription of why it works). I also found good information on these sites:

<a target=new class=ftalternatingbarlinklarge href="http://www.homeopathic.org/">http://www.homeopathic.org/</a> (I believe it has a locator of certified homeopaths, ours is a trained MD and has a masters in homeopathy or MHom after his name)
<a target=new class=ftalternatingbarlinklarge href="http://www.abchomeopathy.com/">http://www.abchomeopathy.com/</a> (good general description of how it works)
<a target=new class=ftalternatingbarlinklarge href="http://www.homeopathyhome.com/">http://www.homeopathyhome.com/</a> (good links to other resources)

I hope this helps. Feel free to email if you'd like at [email protected]

Sincerely,
Jody

anonymous
05-17-2005, 12:30 PM
Hi, I would love to hear about some of what you guys are doing as far as homeopathic treatments! Anyone want to share some examples??

anonymous
05-18-2005, 03:03 AM
Imagine if you will that at any given moment you can take a snapshot of your general health state. We all have certain tendencies (generally cold versus hot), likes (love thunderstorms and dancing, sweets), dislikes (hate cold weather, sour foods), physical ailments (tend to get rashes, bad periods, achy joints), emotional tendencies (cry easily, need/like hugs), ect. What traditional Hahnemann homeopathy does is find THE REMEDY that best matches your current health picture. Each remedy has its own "picture" as well. What this means is if a perfectly healthy individual took this remedy he/she would eventually exhibit symptoms related to this remedy. Using the Law of Similars, Hahnemann found that introducing a substance in incredibly (almost untraceable) small amounts into a person exhibiting symptoms similar to the remedy, the remedy would CURE the individual. So if my remedy picture fits Pulsatilla, I am strengthened by it and begin to see certain problems fall away. As I continue going up in potency (term referring to strength of remedy - 12C is less potent then 30C), the remedy works on the underlying imbalances that led to the physical problems. Also as you continue with a remedy, your remedy picture can change. It is kind of like peeling back the layers of an onion. This is constitutiional homeopathy and it is used for chronic conditions, basically long-standing patterns/problems for the individual. In my experience this is the best and truest form of homeopathy and it requires a professional.

Many people use homeopathy for simple acute problems like colds, flus and even broken bones and that is it. You can get a kit that contains the most frequently prescribed remedies for common family ailments. Learning to use them requires a bit of study and a good book to keep on hand. However, if you have a more complex issue (chronic fatigue, infertility, chronic illness) you can really only get results working with a homeopath as described above. I don't know about other homeopaths, but ours always helps us determine if a remedy would help in an acute situation if we are under his care for a chronic problem.

Sometimes, if you are on a constitutional remedy, just increasing your remedy frequency (1 time a day to 2) will help you through a cold or flu. I have witnessed this with our son this year, especially when he had RSV. His remedy helped him expel the mucus and kept his lungs clear. He never developed the typical RSV wheezing and didn't require any breathing treatments. His cough stopped at the 3 week mark and didn't linger on in any form. He did require an acute remedy to help with his vomiting during this time (Ipecak 30C) which helped him stop vomiting, in about 2 days, and begin to eat again. This remedy was only used for a short time and we continued his daily remedy all throughout. Now other colds he went through very easily and required no change in his daily dose.

Typical homeopathic care requires an initial in-depth (usually 2 hours) appointment, what is referred to as "take the case". A remedy will be recommended and a follow-up appointment scheduled. These follow-ups are usually every 6 weeks, but may be sooner if you or your child are chronically ill or the picture isn't completely clear at first. Ben was very difficult at first because as a baby he couldn tell us little and his physical symptoms kept changing as he worsened prior to diagnosis. Now I feel I am able to observe more and understand more about my son's overall personality and state of health. Plus the diagnosis helped us understand more about his unique physical challenges. More than likely this remedy will continue to strengthen him and will point us to the next one as he gets older. It is like fine tuning a piano.

Working with a homeopath on behalf of your children simply requires good observation skills and writing things you notice down on the calendar so you can review them during follow-up appointments. Best of all if a remedy isn't quite right their are no adverse side effects, it simply doesn't work. As with anything, research and read as much as you can so you can have realistic expectations. This form of medicine has incredible potential but requires patience and perserveance at times. Developing a good working relationship with your homeopath is critical. Ours is patient and always available. He is also a trained emergency MD and understands how to work with people on allopathic medicine (prescription meds). I have always felt secure knowing he started as a traditional doctor before training as a homeopath, but that's me and it doesn't necessarily speak to capability. A non-MD homeopath can be just as wonderful and qualified. Certification, however, is a must.

I hope this helped answer your question.

Jody

HollyCatheryn
05-21-2005, 05:30 PM
Jody gave a great description of how and why homeopathy works. One of the descriptions my homeopath gave me is that they used to use quinine to treat malaria. But, when you are healthy and you take quinine, you display symptoms very similar to malaria. The reason it works this way by matchin your symptoms to a remedy with similar "symptoms" it causes your body to react and correct the imbalance making you sick in the first place. The smaller the dose, the better. If the dose is miniscule, then it gives your body just enough nudge to cause it to correct itself without overriding the body's balancing efforts. With conventional medicine, you override the body's systems and force things to happen. Sometimes this is necessary, but many people have found that stimulating the body to correct itself wherever possible, not only "cures" the problem (rather than painting over it), but the effect can be much more permanent and has no side-effects. It has no side-effects because it is not the medicine treating your problem or illness, but your body. Another (imperfect) way of describing how it works is looking at a clock pendulum that has stopped swinging. You can take your hand and pull it all the way to one side and let it go and it will start swinging again, or you can give it a very tiny nudge and it will also start swinging. You don't necessarily have to use as much force as you can to get the same job done.The first remedy I was given has really changed the viscosity of my mucus. I notice it is much more fluid now. I still cough and do my treatments, but I clear things much easier. I find that my nose will run sometimes. Before I was in a fairly constant state of congestion (not seasonal, but had been this way for years). You can't tell someone to take "X" remedy for "Y" symptom because everyone's constitution is different. We may both have mucus problems, but if you are hot natured and like spicy foods and are an early morning person your&nbsp;overall make-up is very different from mine and therfore your "picture".Homeopaths can treat specific ailments, but they do so in terms of who you are as a total individual. Rather than saying, "Oh, you have sinus problems. Here take Amoxicillin."For example, when I told my homeopath about my having CF, his reply was thus: "OK, but that label doesn't tell me anything about *you* and what you are like. We're not going to treat your CF. We are going to treat your chronic congestion, your difficulty clearing mucus when you cough and&nbsp;your frequent troubles with nausea." Then he spent over an hour asking questions and listening to my answers, asking more questions for deeper answers and taking page after page after page of notes. I spent 2.5 hours with him that first visit, learning about what homeopathy was, how and why it works, getting a physical (checking basic things like ears, nose throat, heartrate, blood pressure, circluation) and then answering and asking questions.It was so refreshing not to be immediately lumped into a group by the CF label and to have him tune-out to what I was saying 5 minutes into describing why I had come. He was highly recommended by my midwife, who is AWESOME and I love dearly and he is both a certified homeopath as well as an MD. Definintely a VERY positive experience.

forsaxon
06-28-2005, 03:36 AM
<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hi, I just wanted to say a big THANKS to all that has replied, this is exactly what I was after. Will keep you informed if we find something additional that works well.


Yours in health
Donna (mum of baby Saxon 3mths w/cf, Georgia 3yrs w/o cf)

lovingBenandCambree
07-12-2005, 07:39 PM
Hi I just recently started taking Ambrotrose which is also a Mannatech product. I have had many difficulties this past year after having a baby and am willing to try anything. I recently talked with a mother who has had her baby on it since she was 4 months old. She is currently 7 years old and doing wonderfully. She does no nebulized treatments. Her mother swears by it. I am not a Dr. so you may want to do more research. The products are pretty expensive, but the mother I talked with told me that there is a hope program that her daughter is on through mannatech that helps with the costs. Something to that effect. I would research on their website, www.mannatech.com. Good Luck. He can still have such a wonderful life. I do!

forsaxon
07-27-2005, 09:56 AM
<img src="i/expressions/heart.gif" border="0"> Just me again, I don't think I THANKED you guys enough for all your information. I know it takes time & effort to post messages so the fact that you went to so much detail is so greatly appreciated. I have tried homeopathics in the past for my daughter but obviously didn't get a very good practitioner because she never did any good, so I have been using herbs very effectively since. However I have still held a belief that if I could find a good homeopath it could work for us too. So since a few of you are having great results I will endeavour to source good one now before I really need one as bubs is doing great.

Thanks a million again
Yours in health
Donna (mum to 4mths baby boy W/CF & daughter 3 1/2 WO/CF)