Re: CF Education=hospital stay? For everyone?

October 31, 2000

HI, its me, Jen again

NO, not all hospitals do that! Personally, I think they try to " size the

parents up " to some extent as well as evaluating the kiddo and perhaps even

the pediatrician involved..... if the kid is not doing well...then from

reading the lists, it seems most do hospitalize. If the kid is doing well

enough, though, and the parents seem to be capable of learning without

becoming overwhelmed, then most hospitals seem to have stopped this (also, I

think it also depends on how much time the doc has to spend with y ou???

like, in our case, when was first diagnosed, they had to fit us in to

see the doc on Dec. 24, y ep, Christmas eve, b/c they were so booked up

before the holidays......but, then the doc spent hours talking to us that

day, as well as the nurse, plus they sent RT and the dietician over from the

hospital to educate us.

When Brittany was diagnosed with Diabetes last week, for example, they really

wanted to put her into the hospital for " parent education... " Ron really had

to argue against this, explained he has a PHD, explained all about what we

already do about , Mallory, etc (sgowed them Mlalory's accessed port)

and also explaoined there is no way we can take care of 3 with CF at homae

and deal with one in the hospital, too--UNLESS she medically needs to be in

the hospital, that in that case, we will do what we have to.....but if it is

only for their convenience to " teach " us, they need to find another way.

So, maybe you could try to see what their rationale is.......they might onlly

want to get to know the family even...

its like everything else.....CF care varies widely center to center.....

take care,

Jen

October 31, 2000

We did not have to stay in the hospital, but spent many hours there learning

how to take care of our daughter's CF needs. This involved learning chest

physical therapy (CPT) and how to give her enzymes. I'm sure the CF center

can work with you unless there are medical needs that required

hospitalization. You will learn quickly how to be your child's best

advocate! And maybe, maybe, you won't need to know any of this. Good luck!

Lori (another one) in Florida

CF Education=hospital stay? For everyone?

> I noticed Lori said when they received the results as postive, Scout

> had a three day hospital stay. Is this the same for everyone or

> were there circumstances? I can handle anything as long as I'm

> prepared. I have two other small children that would need child

> care. Did Scout have a weight concern that needed to be addressed

> immediatley, was that the reason for the hospital stay?

>

> Thank you all so much, you have been wonderful and very accepting of

> one who might not belong here...

>

> Meredith, only 24 hours or so and we'll know...

>

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October 31, 2000

Meredith, I, for one, feel that you DO belong here. Some individuals go most

of their

lives before getting an accurate and positive diagnosis. A friend of mine

has a child

who shows EVERY sign of CF and is quite ill, but the sweat chloride test is

still ne-

gative, low in fact, and no genotype has been found--yet. In my opinion, you

and

your family and she and her family do belong on this list. If the genotypes

are rare enough, the parents will not be labelled as carriers, and yet they

may be and the

children may have cf or an equally life-threatening and very similar

condition. I say

that one treats and regards the child as having cf until and unless another

equal-

ly explanatory condition can be identified. But, no matter what, you and my

friend

still belong with us, are having virtually identical medical and hospital

experiences

and we should welcome those who have what may, after all, be " cousin "

diseases.

There you have it--the bias of the day! But that really is how I feel as a

mom wcf

and the mom of 3 grown " kids, " 1 wcf--how many in our own family have failed

to be

accurately diagnosed? The answer is far too many. One is too many. No

matter

what the outcome, and I hope for the best, I say you and my friend and others

in sim

ilar circumstances definitely belong with us--where else? Love and hope,

n

Rojas, Berkeley, California

November 1, 2000

When Eilish was diagnosed at 3 weeks we stayed in the hsp for 3 days (Ithink ,

could have been four). This was when they showed us how to do enzymes and

medications. We didnt actually get shown physio until the following fortnight

as our dr. doesnt like to show everything at once as some parents are

overwhelmed by how much they suddenly need to do. So we came back for a few

hours 2 weeks later. The three day stay was good because everytime we thought

of a question we were right in the hsp. and could ask the relevant people. We

also saw the dietitcian during those days.