Re: MARION Am I in denial?/Hello!/response/MELINDA

[Guest guest]

Well, usually the reason has several bases:

1) many with cf lose up to 7 times the amount of sodium chloride in all

bodily exoc

rine secretions as do non cfers, and many times the ammount of other

electrolytes,

such as potassium chloride as well; this is, in part, what the famous " sweat

chloride

test " is all about; electrolytes are lost especially during hot weather

through well, SWEAT! This can also cause lause of bodily fluids, dehydration

or partial dehydration and can even lead to non-epileptic caused seizures and

loss of consc

iousness. So in terms of survival sense, heat is a great danger to most with

cf,

whether from the climate, overheated house, fever--whatever the cause;

2) the elctrolytes that are lost through sweat, primarily sodium chloride,

and even

calcium chloride, are irritating to the skin, cause itching and burning and

make the

person wcf extremely uncomfortable, in addition to all that mentioned above;

3) one of the tests often done on cf patients admitted to hospital for an

exacerbation

is a complete electrolyte panel; especially if the weather is hot or the

patient has had a fever or both, the drop in all chloride channel

electrolytes can be astonishing.

Tomorrow I will be moving, and I found a lot of old medical records, some

however, as recent as last year, and read the blood and serum work-ups; on

one admission for an infection (lungs), my chloride level, which should be

well over 106, was 90;

my sodium level, which should be above 135, was 95, and my potassium level,

which should be about 5 or so, was about 3.00--in otherwords, I was heading

into

shock! All this from a low-grade fever and mildly warm, but uncomfortable to

me,

warm weather.

For those with an asthmatic component AND low sweat chloride test scores, this

heat sensitivity may not be such a problem--but it is common, and it is

serious.

My doctor just reminds me over and over again that eating provides the

" sponge "

which holds the water in and that I should drink gatorade (I dilute mine by

half with

water) and eat, EVEN IF I DO NOT HAVE ANY INCLINATION TO DO SO. My

sweat chloride scores were 170 to 180 at the highest and 150 at the lowest,

so far!

I would say that doing what many parents do is wise: just use your own

observation,

and, if in doubt, extra nutrition and fluids won't harm anyone in hot weather

and may

really make the difference in your child. There are always look warm

showers, and

if your child likes it, and has had swimming lessons, swimming in hot

weather. My

guess is that children with cf get cranky in hot weather for all of the above

reasons

and that one must try any number of solutions to prevent dehydration,

over-heating,

and the uncomfortable skin problems. I know that my mother NEVER

over-dressed me, and that surely was fine with me--same with my daughter. I

used to get telephone calls from the school that little r. was not wearing

her jacket! She had not

left the house wearing it either. I just left it up to her, within reason,

of course.

Teach YOU to ask ME a question!!!!! I hope that I have helped and not

confused the

situation. This is obviously one of my pet peeves!

n, wcf, mom of 3 adults, 1 wcf, and a family full of pet peeves! I

cannot believe

that you actually signed up for one of my major diatribes! Cheers to you and

yours!