Re: Update on Shaelin

August 3, 2003

Hi there, I am glad things are going along as well as they are. I think the

size is primarily the consideration. All need some kind of percussion, etc.

Folks have many names for it BUT that's what it is :):0 I do hope you will

get it. The kids GENERALLY take to it if introduced well. It sure helps the

folks :) Bets wishes.

Oh, the last of your post didn't show for me. It stopped at the sentence she

said.....about the mag. hope you have a great week ahead

LOVE & HUGS,

GrandmomBEV

Update on Shaelin

Shaelin had his follow-up at Childrens last week and overall is doing

well. His lungs sound great so the pulmonologist is going to try to

decrease his Flovent from 110 mg BID to 44 mg BID. If he continues

to do well, she may have him use it only for respiratory exacerbations

..

I inquired about the vest and she is going to have us meet with PT

there in October for an evaluation. Aside from size, I don't know

what they use for criteria. Does anyone else know what they look for?

His weight is increased slightly. He is now 29.1 lbs. His stools

however remained unformed so she has increased his Pancreacarb MS 8

to 4 tabs with meals. So far, I haven't seen any improvement.

I also asked her about magnezium supplementation and she said they

August 3, 2003

--- <JBEarle@A...> wrote:

I also asked her about magnezium supplementation and she said they

don't recommend it unless a magnezium level is low. She did add

that to his yearly labs which are due. Does anyone know if this is an

accurate picture of the need for magnezium?

Ohmygosh... I'm going to hyperventilate. Quick! Someone please hand me

a paperbag!

::::Breathe, breathe, breathe::::

Okay, I'm calm... for now.

Jeanne, did you ask your doctor why " they " don't recommend checking

magnesium levels? (I would love to know her response!)

Also, no -- checking serum Mg levels will *not* give an accurate

picture of the need for Mg.

I don't know why doctors don't know this; it's not like it's a

recent 21st century discovery or highly specialized rocket science.

It's really kinda scary that so many doctors are clueless about the

difference between intracellular and extracellular Mg, and the

physiological importance of this mineral.

I *can* understand that many doctors may not yet be aware that new

technology exists for testing intracellular Mg levels, but I think

there's no wiggle-room for doctors not knowing the basics: serum Mg

isn't a true marker of deficiency.

(What, did they *all* sleep during biology class?)

Sure, your doctor can add a serum Mg check to your child's yearly

labs, but consider these things:

1) it takes just 2-3 days for a person to become Mg-deficient; all it

takes is a good bout of vomiting, diarrhea, excessive sweating, bad

diet, surgery, stress, inflammation -- and/or taking Mg-depleting meds

such as tobramycin, gentamicin, azithromycin, erythromycin (and other

antibiotics too numerous to mention); antifungals, steroids (oral and

inhaled), bronchodilators such as albuterol, etc.

2) Mg serum levels vary by lab; some labs say a " normal " serum range

is 1.6-2.6; Medline (sponsored by the NIH) says the " normal " serum

range is 1.8-3.0, while a Mg document co-sponsored by the NIH and USDA

says the " normal " serum range is 1.8-2.3. (...drives me nuts.)

However, one thing all Mg researchers *and* the NIH agree upon is that

you **cannot** rely on serum levels to give you a true picture of

Mg deficiency.

Studies show that intracelluar Mg levels are low even when serum

levels are in-range.

As example, studies show that during asthma episodes, erythrocyte Mg

levels decline even while plasma levels remain " normal. " When people

with asthma are given IV magnesium, the asthma episode resolves and

erthryocyte Mg levels climb to normal -- while plasma levels remain

unchanged.

Now, if serum Mg showed you a true picture, wouldn't you expect the

plamsa Mg level to increase after IV Mg? Yes, but it doesn't; only

intracellular increases and that's because only 1% of total body Mg is

found in serum! Roughly 60% is in bone, 40% is intracellular.

Consistently, the populations showing low intracellular Mg levels are

those with malabsorption and gastric issues, asthma, pancreatitis,

migraines, heart disease, fibromyalgia, rheumatoid arthritis,

depression, bi-polar, Tourettes, ADHD, diabetes, and numerous other

chronic illnesses.

I'd still like to smack these doctors upside the head with a hefty

biology book! Please help educate them: serum Mg levels do *not* give

a true picture of Mg-deficiency!

Kim

August 3, 2003

All need some kind of percussion, etc.

> Folks have many names for it BUT that's what it is :):0

My son's CF doctor has never suggested I perform percussion on him. I

don't even know the technique. His symptoms have primarily been

sinsusitis, polyps and some malabsorption. Are there any others who

don't have to percuss their child' lungs?

jan

August 4, 2003

Do you mean CPT? PFT = pulmonary function test. CPT = chest percussion

therapy. Although I suppose either could be prescribed.

Becky

Re: Re: Update on Shaelin

Hi Jan,

Even though Milan has never had any form of lung problems, when she was

diagnosed, her doctor immediately prescribed PFTs. She was then prescribed

the vest soon after that. My understanding is that even though she has not

had the lung involvement, the PFTs are to make sure that the lung problems

are put off as long as possible.

August 4, 2003

Hi Jan,

One doc told us CPT was " trivial " and that Zach should just stay

active. This was a CFF pulmonologist. We quickly changed doctors.

We do CPT twice a day and Zach has not had any lung problems yet,

but it is our understanding that his lungs are being effected on a

microscopic level. I would ask your doc what his reasoning is for

not informing you about this important part of CF treatment.

Sara - mommy to Zach 17 months

> My son's CF doctor has never suggested I perform percussion on

him. I

> don't even know the technique. His symptoms have primarily been

> sinsusitis, polyps and some malabsorption. Are there any others

who

> don't have to percuss their child' lungs?

>

> jan

August 21, 2003

Rice is binding. Also try baked potatoes. gets awful diarrhea from all

the oral antibiotics except bactrum. Especially Cipro and Augmentin. Good

luck, I'm glad the trial of the vest went well!

Update on Shaelin

Hi everyone,

Shaelin had his follow-up with ENT today. When they scoped his nose,

he was found to have a whopping sinus infection but no sign of any

recurrance of the mucocele or any polyps. He was put on Augmentin

400 mg bid for 20 days and Afrin and saline irrigations for the next

couple days as tolerated.

He also met with PT to see about the vest and he did pretty well.

The vest fit fine and he left it on and running for about 5 minutes

which I thought was good as he had already been to ENT, had a CXR and

it was his time for his nap by the time we had the appointment. She

was going to try to get a prescription for it this week so we will

hopefully have it within the next 2 weeks for our 30 day trial.

Besides trying to get him to eat yogurt, has anyone had any success

with anything else to ward off the diarrhea I know he is going to

have by the end of his course of Augmentin?

Welcome to everyone who is new. This is a great group which I'm sure

you will find very helpful.

Jeanne (foster Mom to Shaelin, 2 1/2 wcf)

August 21, 2003

I AM THRILLED HE WILL MOST LIKELY GET THE VEST . I THINK THAT WILL PROVE

TO BE A BIG HELP to you and he will feel like he is in command. As they

get older THAT is really important . There is so much they HAVE to do

BECAUSE........

I hope all the other clears up shortly , the meds should move it along

Have a great weekend ahead

LOVE & HUGS, grandmomBEV