Natural Therapies

[Salli]

Hi Everyone,

Just wondering what natural therapies people use for helping to treat the CF symptoms or for preventative measures? I get Archie adjusted at the chiro monthly and see a naturpath (for me at the moment and Archie when he's bigger) but I am curious as to what others may use on their CF child or themselves.

Does anyone use aromatherapy or specific food groups to help with CF?

 

[anonymous]

Hi Salli,

I give my daughter acidophilus(probiotic) tablets every day. It is used to promote healthy bacteria in the gut and to prevent yeast. I checked with our Cf clinic and they are fine with this. They actually recommend it especially because people with CF are on antibiotics so often it wipes out the good bacteria as well as the bad.

I know some poeple give their children fish oil for the DHA, which CF'ers are deficient in. I haven't though used to takte fish oil myself when i was nursing my daughter to increase the DHA in my breastmilk. But, I feed my daughter fish(salmon, tilapia) often, she loves fish!

I'm interested as to what other do, too.

Rebecca

 

[Ratatosk]

I asked our doctor about fish oil when studies came out about it's anti-inflammatory properties. My mom takes it for joint pain, memory problems.... My doctor laughed and said, if you want to try to get 30 fish oil pills down your child every day -- ds was less than a year old at the time -- go ahead. Apparently you need to take a large amount to derive a benefit.

 

[wanderlost]

fruits and veggies and nuts! Look into curcumin, oregano oil, whole food supplements, and probiotics. There are some amino acids that are thought to help, though i don't know which ones. Avoiding fat if digestion and weight gain aren't an isse is beneficial as well - though it is necessary for those who can't gain weight easily, and excercise, exercise, exercise!

 

[thelizardqueen]

I take oral Oil of Oregano, and oral garlic tablets.

 

[JRPandTJP]

We give our son acidophilius as well. We give him omega 3 oil everyday in his vitamin mixture and we do inhaled GSH through his nebulizer. We started the GSH after he cultured pseudomonas, and since he has been clear. I know some are not certain about this as most Dr won't suggest or support it, but we researched alot and since starting him have noticed huge difference in his congestion when he misses a treatment. My husband knows more about it and can point you to studies and such if you're interested in reading up on it for yourself.

We also have been doing homeopathy for 1 1/2 years and just stopped recently to see if we notice anything different as he has been so healthy. Aside from that we all eat really well around here. I choose not to give him dairy as it is a proven inflammatory and mucus producer. We do soy cheese and cream cheese (sourc cream as well) when he wants it (okay we do real pizza and ice cream from time to time...who could not do that right?). We only cook with omega 3 rich oils (olive, walnut and canola). IMHO, I think lots of protein and good complex carbs is better than loading them up with fat as most CF nutritionist seem to recommend.

I also have a DO who does manip and allergy illimination which we may do when he is a little older and definatley if he shows any signs of seasonal or other allergies.

That's about it. I think you just have to be careful and go with your gut. Take time to see what is really helping as you can go a bit crazy and spend tons of money.

Warmly,
Jody

 

[Salli]

Thanks Guys, Jody what is GSH? and yes, can you point me in the direction of where I can find some info. on it? I don't give Archie any diary simply because he is allergic to it but have recently discovered he is not allergic to goats milk which I believe is very good for us - closest milk to human milk is what I have been told? Do you know much about goats milk? Archie has breast and soy formula as a top up but I have heard conflicting advice on soy milk in regards to the phytoeestrogens and them being bad for infants. I am thinking I will put Archie on goats milk when I wean him. Can you also give me guidance as to where I can find info. on allergy illimination?

Thanks for all your help and I'm glad to hear you little one is doind really well.

 

[Salli]

Sorry Jody, couple more ?'s... How old is your son and when did you start giving him vitamins/omega 3 oil? What vitamins do you give and how much oil? Do you give enzymes when you give him omega 3 oil? When I put oilve oil in Archie's food he gets mushy poo's even when I think I am calculating the correct amount of enzymes..weird. I might try again today and see what happens. I asked his doc re: vitamins at his last check up and he said he wouldn't need them yet?

 

[Scarlett81]

I have to say-I think most doctors are going to tell you that you'd have to take large quantities of any "natural/vitamin" supplement to see benefits. I never met a doctor that didn't say that-till I found my current doctor.

I think it's their job to say that-they don't want to raise false hopes, and their job afterall is medicine-using meds to treat a problem. It's like the age old battle of chiropractor vs. accupuncturist-this is a divide that will never end! You ask one about the other, and they just say-oh that doesn't really do any good.

I don't believe in any quacky quacks. Anyone that says or claims they can "cure" my disease-and it's bye bye. Out the door. But, from reliable nutritionists and research I have gotten alot of help with supplements. Alot. My mom was a believer of eating healthy whole foods and giving me all types of vitamins and health shakes-and I'm doing pretty good for someone who's had cepacia for 10 yrs.

 

[JRPandTJP]

Salli, GSH is glutathione and the CF lung is deficent in it due to CFTR. It is an important antioxidant which helps the lung fight bacteria and keep mucus thin. Here is a site for many research articles <a target=_blank class=ftalternatingbarlinklarge href="http://members.tripod.com/uvicf/">http://members.tripod.com/uvicf/</a> My husband did the research and I have seen a noticable difference in his mucus when he misses a treatment. I don't feel comfortable giving doage information or anything, but the site above goes into great depth about all that stuff if you should choose to do it for Archie. You can email my husband, Tom with more questions as he has all the links and discussion group on his computer - tjp1004@yahoo.com

I also tried goats milk for a short time for the same reasons you mentioned but he didn't like it. He was fully breast feed until 19 months and drank water or soy, but we noticed as he began to have less BM and more soy his stools were getting messed up. We switched to rice milk as an altenative to soy and it has been great. I alway nnursed him first, then gave food, then a sippy to keep my milk supply up. I five him only rice milk and water now for drinks and sometimes a souped up smoothie. Rice milk should not be used as a major source of calorie intake or as fomula as it is low in calories and has not fat. We have added coconut milk to it and even a little rice protein powder but since it account for so little of his diet now that he eats so much food, we don't add it any more. Plus, he says "ick". Thus far his weight has been steady and adequate so I'll only change if need be. But if he like goats milk I'd say that is great since it has the fat and protein you'd want after weaning...but if not I'd say they really just need a beverage to keep hydrated more than for calories if they have a healthy appetite...that's just our experience though.

Here is my DO's site address and a little on allergy elimination...again we haven't done it yet but I'm hoping to save enough for Ben and Julia and then my husband and I to give it a try. <a target=_blank class=ftalternatingbarlinklarge href="http://www.osteomed.com/Allergy.html">http://www.osteomed.com/Allergy.html</a>

We started vitamins at 7 weeks since he was vitamin K deficient (Vitamax - 1ml) and then added an all natural chewable when he could eat them in addition to the Vitamax. But this is prior to diagnosis and he was deficient in zinc and protein as well so if he had enzymes from the beginning, I'm not sure when they would have stated him. The chewable was just a little more complete in other vitamins but the vitamax has the right amount of ADEK. I think we stared him on Omega 3 between 12 to 18 months, especially as he was backing off of nursing. We give it as part of breakfast so he already has enzymes on board. It is only a 1/2 teaspoon so it has never caused an issue with enzymes. However, when we use to add oils to his food I felt it overloaded him so we stopped. I honestly think they are no different then us in term of eating too much fat..it is going to upset digestion and throw your system off a bit. I just never saw a benefit to adding fat to his food. Again that's what we noticed with Ben. OH and he is 22 months now ;-)

Gosh, I hope I answered your questions well enough. If not, please let me know. It is really mind boggle at times sorting through information. I really couldn't handle it last year but I'm more able to look into things this year without feeling I'm not soing enough. I'd say if weigh is good and he has a normal growth curve don't worry too much about packing him with calories. Your breastmilk is the best thing and as he starts eating more foods just try and nurse first to keep you supply up. Go with your gut, you'll know if he need more calories...plus they will go through period of not eating much like other babies/toddler adn then other time eat you out of house and home. I'm slowly learning the art of not freaking out when he doesn't want to eat all the wonderful protein foods I present him and only wants fruit. They'll keep us guessing for the rest of our lives I'm sure of it ;-)

Warmly,
Jody

 

[Salli]

Thankyou so much Jody, you have been a great help. I will do some reading (more reading I should say - I feel I am forever researching - trying to do just that little bit extra which might make a difference) and will get back to you if I have any other questions.
Once again, thank you so much for the info.

Kind regards,

 

[anonymous]

I use a product called Kid-e-Kare rubbing oil on my sons feet. It is a blend of oregano, lavendar, and sage oils.

Nicole

 

[Salli]

Hi Jody,

I don't think I have your hubby's correct email address - I have tjp1004@yahoo.com??? My email keeps coming back rejected??

 

[HollyCatheryn]

I use Reliv supplements and my health has been better in the last 3.5 years (since starting on it) than it ever was, even as a little kid. (My whole story is on <a target=_blank class=ftalternatingbarlinklarge href="http://www.geocities.com/MurrensNatureMama/Reliv">www.geocities.com/MurrensNatureMama/Reliv</a>.) Sometimes I use chlorophyll, acidophilus and a few other things. Most of them are written down on the above website on the "<a target=_blank class=ftalternatingbarlinklarge href="http://www.geocities.com/MurrensNatureMama/wellness">Health and Wellness</a>" page.

I've found though that since starting Reliv, I haven't needed any other supplements regularly.

I go to a chiropractor who works wonders! Chiropractors aren't a cure-all. If your spine is the cause of problems then you will notice improvement, but if it isn't then you might not notice anything at all. It doesn't hurt to go and check it out though. I evidently had numerous problems that had been compounding over the years and it is taking a long time to get them corrected. We got our daughter started early so that any time she is out of line it is easily corrected because her spine is used to being in proper alignment.

I rinse my sinuses using a Neti Pot. I make saline at home and add 5 drops of Grapefruit Seed Extract to it. This helps keep my sinuses clear and wards of infections (both sinus and lung).

I am big on nutrition. When your body is nourished properly, you have the fuel to do all the other stuff: fight off infection, restore health, heal, flush out toxins and waste, grow, learn, develop, etc.

We also avoid vaccines. We chose to partially vaccinate our daughter with a few carefully chosen vaccines. I do not get flu or pneumonia shots. Check out "Vaccines" by Neil Z. Miller if you want to know more.

I also handle most of my health issues through our family practitioner and my CNM (certified nurse midwife) rather than through the CF clinic. I go to my regular appointments for PFTs and to keep up, but I find them WAY to trigger-happy when it comes to prescriptions. They also seem pretty limited in their ability to solve problems (they only have 1 or 2 ideas of how to treat things), so I see people who are a little more conservative and creative. Not every CF team is like mine, so this approach wouldn't be appropriate for everyone.

 

[anonymous]

Hi Salli, i just thought i might give a little more info on GSH, since your interested. Although i do not use it on my daughter who is 17mnthsols w/cf, as i am still deciding on what to do.

I don't have the exact link but if you google (Valerie Hudson), her site has a great deal of info, she too uses it on her two boy's and is an advocate for it.

In regards, to what Jodi said about inhaling GSH, i have heard and read that not enough trials have beeen done to say its safe to inhale it, as well as how much to inhale. When i confronted my dd doc about it he said if you want to use it, i would only say to try the oral GSH, and not do inhaled as it can cause unknown problems.

Also, a good idea is to give your baby some highly potent pro-biotcs which helps with intestinal flora and hepls digest food better. Some Vitabdeck, which have probably alredy been mentioned to you(all cfer's take it), fresh food and veggies and any oils containing omega 3,6 and9.

I hope this helps, if you have any questions i will gladly answer them.
Eli(not logged in)

 

[anonymous]

Thanks Eli, I will ask my doc about it at our next check up and see what he thinks - then I might trouble you for some more info. on it if needed. What probiotics do you give your daughter and what age did you start them? I have given Archie some Lactobac when he was on antibiotics for cold which helped to keep his stools normal (they went a very mushy) but I haven't kept giving it to him. I might check with my naturpath as to what he thinks is a good one for Archie. He is allergic to cows milk so yoghurt is a no go at the moment. Have tried goats milk and he is slightly allergic to that - just gets red marks around his mouth which disappear really quickly. This allergy thing is a bugger!

Salli

 

[eli]

Hi Salli, i give my daughter a probiotic called (cyto bifidus), whivh you can only buy directly from the practioner here in Australia.
The reason we can't sue normal over counter probiotics is because they are not potent enough for people with CF.eg, like the fish oil tblts you need 3000 caps a day to give your child's body the amount it needs.
If you like i can give you a list of exactly what it contains and you can see if they have somthing similar, if not i can give you his website and you can purchase it over the net.
You will need to check with the doc's before you start him on anything, because of his allergy, it could be dangerouse.
If you need any more info, just ask.

Eli

edited to add: sorry, forgot to answer one of your?. I started her on the probiotics at about 8mnths, but you can start as early as 6mnths.

 

[Salli]

Hi Eli, I'm actually an Aussie too - live in Melbourne. That would be great if you could give me the contact details for it. I would love to grab some info on it to show my doc at next appointment.

Thanks again

 

[Salli]

By the way you have a very beautiful daughter <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[eli]

Hi Salli, thanks.

I was just in Melbourne inMarch, and i'm coming back up in October for a wedding. Where in Melbourne are you? The wedding is somewhere near Thomastown/Preston not sure .

Ok, some info on the probiotcs. Its called cyto bifidus by Eagle (google it), it contains approx 10billion organisms as opposed to others at chemist and healthfood which contain i think about 2billion. It helps promote and replace intestinal flora. The organisms include

eqiv Lactobacillus acidophilus 5.3 billion

eqiv " " delbrueckii

ssp lactis 30.6 million

eqiuv Lactob rhamnosus 40.8 million

equiv " " casei 91.8million

equiv " " plantarum 3.36 billion

equiv " "brevis 20.4million

equiv " " salivarius
ssp salivarius 20.4 million

equiv Lactob bifidum 1.32 billion.


Hope this helps, give this ingrediant to your doc.

Let me know how it goes.

Eli