Re: restrictive airway disease

[Guest guest]

Hi-- RAD is sometimes used instead of asthma. I don't really know if

there's a big difference between the two things really. Anyhow, just

wanted to extend my sympathies. When Ethan was 2 and a half, that's

when his started. We'd never had any signs before either. Other

than other signs of mercury problems of course!

Ethan takes Flovent. It is a mild corticosteroid to get inflammation

down and keep it down. I hate using a steroid but, the downside is,

if they don't keep the asthma under control, then you end up having

an ER visit or whatever and the dose of the steroids that they get at

that time is wayyyy more than the cumulative dose of the daily

flovent. So I figure until I can get his body more in

shape/corrected then we will use the daily flovent just to keep

things steady. You might be able to get him on a lower dose of

flovent-- with Ethan, the recommended is two puffs per day and for a

while there we were doing really well on just one puff a day. Play

with it a little.

I would really emphasize though not going overboard. Sometimes kids

are put on like four different things all at once-- too much! Try

the flovent at the rec'd dose and see how things go. Lyprinol is

something else Ethan takes daily-- you can find that on the

internet. It has some good info about how it helps asthma. (it's a

green lipped mussel oil, and I have the printout for the toxin

content-- it's a very good quality product without the risk of toxins

present in it). AND, one thing that we do and it's really helping

(knock on wood) is nebulized Intal (aka cromolyn sodium). Intal is a

synthetic bioflavonoid. It is a mast cell stabilizer. Bioflavonoids

are found in foods, fruits I think. SO I feel really OK about giving

him this because it's so benign. Since we've added in the nebulized

intal into his regimen, he is doing soo much better. He LOOKS

better, too. His skin looks good, etc. again, knock on wood--I hate

to jinx things. Anyhow, if they didn't give that, then ask for it.

It won't have side effects since it is closer to a natural product

than the flovent and other asthma meds. It is an old med and so most

docs do not think to use it in favor of the steroid meds. Yes, the

steroid meds are helpful however I just think that the bioflavonoid

component is also really helpful. There are also some good internet

sites for natural things to help asthma, such as things to help the

glutathione levels in the body--antioxidants, b vitamins, etc etc.

There are also homeopathic remedies that can be useful for

asthmatics, too. And chiropractic -- I don't see it as a cure for

asthma, however, Ethan's subluxations are right where they say the

lungs are affected and one time I did accidentally pop something

right there when I was massaging him and he coughed up a lot of brown

mucous the next morning. It was like it loosened up something and

got something flowing. So anyhow, I do take him about a half dozen

or so times a year just to get that part adjusted and try to keep it

more in alignment.

One thing that is on my to-do list is to try nebulized glutathione

with Ethan. The lungs really use up/need glutathione and I figure it

would be one direct way to get it in there.

And in terms of a nebulizer, ask the doc to write a script for you to

get one--check with the insurance first to find out what you would

pay out of pocket, if anything, but the one I absolutely lovelovelove

is by Omron. It's the micro air mesh type nebulizer model ne-u22.

This is so tiny it is about as big as my hand, weighs almost nothing,

and it is SILENT. Most are compressor types and are noisy. This is

totally silent, and you can tip it and use it at any angle--child can

be reclining, laying down, etc. This is really the only thing that

got us to use the intal twice a day-- before, we never got into it

with how noisy the other one was. Now, he wakes up, heads to the

sofa, we give him the nebulizer and he does it while he watches his

morning show. You can usually find these on ebay at a better price

than most places on the internet. I do have a place on the internet

that I found where you can buy it out of pocket without a

prescription for about 240. On ebay I've seen them go for about 140

or less. It's worth it though if you have to do any meds in a

nebulizer. There are a couple that you can't use in it, however,

because of their weight.

Anyhow,t he flovent rotadisc is what we use for Ethan and I chose it

because it is a powder that is inhaled and so there are no

propellants in it (cfc's) like most other metered dose " puffer " types

of inhalers.

With any corticosteroid however, it can aggravate yeast and so it is

important to have him rinse his mouth well and spit the water out

after taking the flovent. I also get in the habit of wiping off the

mouthpiece to get any particles off of it because I noticed that if I

didn't then sometimes his lips would get reddish from the contact

with them--perhaps the early signs of thrush starting?? So anyway,

be aware that thrush can happen with oral meds like that.

Again, just be aware that with all your specialists that you are

going to be seeing, that they will likely want him to be on a major

regimen of meds. Use your gut instincts about what he needs. I am

not of the belief that more meds is better when it comes to asthma.

I think the more meds, the more stress on the body, and that just

ends up being a part of a vicious circle. You do have to control the

asthma to help prevent the scarring of the lungs, BUT, do it with the

minimal amount of " stuff " needed for your child.

Also be aware that there was some research recently about albuterol

which is a med that opens up the airways--a " rescue " medicine to be

given when the lungs are constricted and they have trouble

breathing... my instincts are telling me that the research may have

been funded and thus skewed results by the makers of another med

called xopenex. The results found that with albuterol, there are two

polymers and one polymer opens up the airways while the other polymer

has a bronchoconstriction effect that takes place several hours after

the dose, perhaps making things worse for the patient. So they were

saying that the medicine with only one polymer is probably better.

There is one med that has one polymer, xopenex. I have noticed that

when Ethan is needed the albuterol nebs when he is sick, that it does

seem like things just get worse for a while before they get better,

but I don't know if it's from what this research is saying or not.

Either way, something to keep in mind. The xopenex may not be

covered fully by your insurance, but it does also have the benefit of

making the child feel less jittery. Albuterol tends to make them

feel like they've drank 40 cups of coffee--gives them the sewing

machine leg movements. Xopenex is less likely to have that effect.

W

> Hi friends, it seems like years I've been gone. Went on holiday

last

> week and returned midnight Sunday. By 2 a.m. we were headed to ER

> because ds couldn't breathe. They admitted us immediately and we

> spent three days there trying to get his blood oxygenated and his

> lungs clear. It was pretty bad. They seemed to indicate that his

> case was unusual -- he's never had any lung problems before this

> violent episode. He's 3.4. We're now finishing the oral steroid

and

> albuterol via nebulizer, and we'll be administering Flovent for the

> next several months. We have upcoming appointments with the ped,

> allergist and pulmonologist. It looks like it was brought on by a

> virus.

>

> Just thought I'd post this update for feedback about restrictive

> airway disease, which is what they finally diagnosed. Any problems

> with Flovent? Anything special I can do to help him avoid another

> attack? We're currently on AFP and sometimes NF, EFAs, BrainChild

> Spectrum II, BrainChild LiquiZinc, extra B6, B12 sub-q, sometimes

> probiotic, epsom salts baths.

>

> Hope this post is clear. These are my first minutes back at the

> computer and it's late. TIA,

[Guest guest]

One thing I noticed today on the box for flovent rotadisk is " each

blister contains 50 mcg of fluticasone propionate with lactose " . So I

don't know if you have flovent or flovent rotadisk, but either way,

if you are avoiding lactose, check into it to see what it has.

W

> Any problems with Flovent?

[Guest guest]

, I can't thank you enough for this *wealth* of info!!! Yes,

we're doing the Flovent now, the inhaler not the rotadisk. Things

are settling down a bit. I really appreciate the time you took to

educate me. I'll print out your messages and cart them around to the

specialists.

-- In , " merrywbee "

<maryandphilip@c...> wrote:

> One thing I noticed today on the box for flovent rotadisk is " each

> blister contains 50 mcg of fluticasone propionate with lactose " .