Re: Re: KIM - A few questions about tea tree oil, magnesium, MSM and selenium

[Guest guest]

Kim,

Thanks for the great info! There is so much

information (and misinformation) out there it can

be quite overwhelming. I didn't know that about

children's tylenol! When the kids have fevers (which

they haven't for over a year), it seemed to kick the

fevers better if we alternated children's tylenol

with children's motrin, which I believe is ibuprofen.

My kids are orally averse, so much of what I give them

has to be ground into a powder and mixed with formula

which is then given to them via a tube. Would that be

okay for the magnesium, selenium and MSM or does

crushing the tablets present a problem?

It sounds like great advice, and I will definitely

go slowly and introduce these supplements one at

a time over the course of several weeks.

Thanks again for your thorough and informed response.

C

Mommy to Mick and Alli, 4 yo twins wcf

--- paynekimj wrote:

> Hi ,

>

> Since my son uses all these treatments, I'll take a

> stab at your

> questions. I'm sorry I didn't see them earlier. I

> saw Beth's response

> to you, and that's what alerted me. I've inserted my

> responses

> between your questions below.

>

> Kim

>

>

> > Hi all,

> >

> > Okay, I've just spent the whole night up with

> Alli,

> > who has decided not to tolerate her overnight

> feeding.

> > This is a sure sign that something is brewing with

> > her. It is also, coincidentally, her off time with

> > TOBI. She's not due to start for another week or

> two.

>

> I hate it when the happens. The same thing started

> happening to my

> son. Eventually, I noticed a decline after being off

> TOBI about only

> two weeks. Not a good sign at all. However, since

> completely

> rehauling his treatments, he has only needed TOBI

> twice in the past

> 12 months.

>

> > 1. If we supplement magnesium and selenium, how do

> > we figure out the right amount to give them (I

> have

> > twins with CF, but Mick is doing fine now - as he

> > should be since he IS on TOBI now).

>

> TOBI, as other antibiotics (and bronchodilators and

> steroids and

> antifungals, and malabsorption, yada, yada, yada)

> will deplete the

> body of magnesium. According to the USDA, a HEALTHY

> 4-year old needs

> 130 mg. magnesium per day. A child with chronic

> health issues and a

> malabsorption disease would need more.

>

> Our motto tends to be " When in doubt, start low, go

> slow. " So, you

> might try Alli on 200 mg. Solgar magnesium glycinate

> per day (100 mg.

> in am, another 100 mg. midday) and watch her stools

> to be sure she

> doesn't develop diarrhea. Of course, in CF, diarrhea

> is often related

> to sudden dietary changes or intestinal upset due to

> oral antibiotics.

>

> As for the selenium, again, start low, go slow. At

> the time my son

> first started supplementing selenium (Se) he started

> with 75 mcg.

> daily, in addition to whatever was in his multi. I

> think he still

> takes 75 mcg. but could probably do more. However,

> I'm not that

> concerned as long as he takes his magnesium.

> Remember, when you're

> magnesium deficient, then you will be deficient in

> antioxidants A, C,

> E, selenium, coenzyme Q10, and GSH and its

> substrates (and you run an

> increased risk of problems with pancreatitis, gall

> bladder, kidney

> stones, asthma, problems regulating glucose and

> controlling diabetes,

> and increased risk of Pa becoming mucoid and

> developing antibiotic

> resistance, and ototoxicity).

>

> There are studies that show pwcf are low in A, E,

> Se, CoQ10, GSH,

> Zinc, etc., so it pays to replenish that

> ultra-important magnesium.

>

> > 2. Can I give tea tree oil to a 4-year-old, and if

> > so, how much and how often, and is it mixed with

> > anything, or just given straight through a neb?

>

> Yes, you can use TTO with a 4-year old. NEVER inhale

> this through a

> nebulizer cup! We boil water, let it cool a minute,

> then add a drop

> or two and then just place your head over the vapors

> and inhale. Aura

> Cacia makes an organic TTO mixed with lavendar,

> which has a more

> pleasant scent. You can find Aura Cacia brand at

> most health food

> stores, Whole Food stores, etc.

>

> > 3. What is MSM, what dosage would be appropriate,

> > and how is it delivered?

>

> MSM stands for methyl-sulfonylmethane. It's a

> natural derivative of

> DMSO and a natural source of sulfur. People with CF

> are low in sulfur

> (quite possible due to a magnesium deficiency). You

> can go to

> http://www.healthwell.com if you want to connect the

> dots between

> minerals and amino acids.

>

> Studies show that MSM can alleviate scarring. So

> some of us are

> hoping that by taking MSM we're preventing or

> attenuating any organ

> fibrosing (scarring) caused by CF. I've been taking

> MSM for over a

> year and have noticed a huge difference in my skin

> and nails --

> softer skin, stronger, faster growing nails. Sulfur

> is necessary for

> healthy skin and nails (and a lot more). You can go

> to

> http://www.msm.com to read more. Please see their

> list for quality

> sources of MSM! We only buy MSM manufactured by

> Carolwood. Carolwood

> patents their MSM under the Lignisol name. You will

> find many

> companies buy MSM from Carolwood and if they do,

> they will put

> Lignisol on the label. One example is MSM made by

> Natrol (that's the

> brand I buy when it goes on sale, buy 1 get 1 free

> at Walgreens!).

> You will also find MSM sold in combo with oh, shoot

> -- what's

> that " g " thing everyone is buying for arthritis? Ah!

> glucosamine! We

> don't buy the combo, just the MSM.

>

> > I gave her some water and children's tylenol

> because

> > I was concerned about her dehydrating, and she

> > immediately threw that up. sigh... So, I'll just

> have

> > to give her more water at a slower pace and pray

> she

> > holds it down. Anyone with any other ideas?

>

> Don't use Tylenol! Acetaminophen depletes

> glutathione (GSH), which

> defeats the purpose of you giving her GSH in the

> first place. If you

> need something to reduce fever or pain, try

> ibuprofen.

>

> You might also try to get as much garlic into the

> kids' diet as

> possible, saute it into your vegetables, soups,

> stews, etc. It's a

> natural antibiotic and many swear by it (we sure do,

> right, Bev?).

>

> also has been using inositol with a with

> excellent results.

> I've read very promising results from others as

> well. just

> started this last Saturday and I can't wait for an

> update. Inositol

> has been studied for a long time, and it's showing

> promise in

> correcting the misfolding problem of the CFTR. It's

> an odorless,

> tasteless powder that you can mix into food or

> beverages. For the

> cheapest price of pharmaceutical, food-grade

> inositol, go to

> http://www.iherb.com and look for Jarrow inositol.

>

> Hope this helps and that you can get your kiddos off

> TOBI for good!

> Kim

>

>

>

[Guest guest]

Hi Kim,

Thanks for the wonderful info. So far all they're

getting is Poly-Vi-Sol and Fer-N-Sol. As for

probiotics, they're getting Lactobacillus GG. Mick

does like yogurt alot though - especially the low-fat

drinkable kind.

I will be putting together a little spreadsheet with

the various suggestions I've received, and introduce

them one at a time - then make notes about their

health status, weight & height gains, whether they

seem to be tolerating it or not, and if I notice

any positive or negative effects in their health

overall.

This will all be great information for their CF team

and GI doctor.

Thank you so much!

C

Mommy to Mick and Alli, 4 yo twins wcf

--- paynekimj wrote:

> Hi ,

>

> Yes, you could use Motrin, Advil, etc. instead of

> Tylenol. Adults (not just adults with CF) should

> avoid Tylenol for

> the same reason -- it depletes glutathione and as we

> age, we naturally don't produce as much.

>

> Yes, you can crush magnesium and selenium to put

> into the tube feeding. The MSM comes in a fine

> powder in

> capsule form so you can just open the capsules. Or,

> more cheaply, you can buy Carolwood's Lignisol MSM

> in bulk

> (no capsules) from http://www.msm-msm.com.

> Acuri-Ware and others have purchased from this site

> and they

> were pleased with the service and prices.

>

> Just a reminder, don't give magnesium any closer

> than two hours after a dose of antibiotics because

> the two compete

> with each other. That same rule wouldn't necessarily

> hold true for inhaled antibiotics, with inhaleds,

> you can be more easy

> in the timing of doses. But with IV and oral

> antibiotics, follow the " 2-hours after " dosing rule.

>

> Having a food aversion makes it so much tougher for

> getting all those healthy nutrients into your

> kiddos. But anytime you

> can get them to drink (or put into their feeding

> tube?) fruit smoothies made with fruits such as

> blueberries, cherries, apples,

> canteloupe, peaches, oranges, tangerines -- plus

> flax seed or flax seed oil -- and plain, nonfat

> yogurt, then you'll be boosting

> their antioxidant levels.

>

> Also, since they're tube fed, it's really important

> that they get their magnesium and keep them on a

> good quality probiotic.

> Jarrow makes an enteric coated probiotic that has a

> really complete listing of natural flora with a high

> ppm/ppb count.

> Probiotics are so important when you're tube fed to

> help prevent leaky gut syndrome. Leaky gut is really

> scary business

> and doctors should be much more proactive in

> preventing, diagnosing and treating.

>

> Do you give them vitamin C and a

> multivitamin/mineral?

>

> Kim

>

>

> > Kim,

> >

> > Thanks for the great info! There is so much

> > information (and misinformation) out there it can

> > be quite overwhelming. I didn't know that about

> > children's tylenol! When the kids have fevers

> (which

> > they haven't for over a year), it seemed to kick

> the

> > fevers better if we alternated children's tylenol

> > with children's motrin, which I believe is

> ibuprofen.

> >

> > My kids are orally averse, so much of what I give

> them

> > has to be ground into a powder and mixed with

> formula

> > which is then given to them via a tube. Would that

> be

> > okay for the magnesium, selenium and MSM or does

> > crushing the tablets present a problem?

> >

> > It sounds like great advice, and I will definitely

>

> > go slowly and introduce these supplements one at

> > a time over the course of several weeks.

> >

> > Thanks again for your thorough and informed

> response.

> >

> > C

> > Mommy to Mick and Alli, 4 yo twins wcf

>

>

>