Kid update 'n stuff

[Guest guest]

Hi everyone,

Hope you all had a nice holiday weekend :-) We did a lot of work around the

house, but also found time for a picnic lunch with friends yesterday.

JENNIE, sorry to hear work is so stressful. This you DON'T need with a baby

on the way and a rather stressful housefull to beging with! (Have I ever

told you how much I admire you for taking in a foster child on top of caring

for two children with CF, and having a housefull of kids to begin with! I

don't know how you do it!)

LETITIA, Good luck in the hospital. Glad to hear you'll have your laptop

along to " keep you company. " And as well-- he sounds wonderful!

SALLY, I thought of croup with Kailin, too. But she never produced any

mucus with the last episode like she did when she got croupy last winter;

also she's almost seven-- isn't she getting a little old for croup? I think

it was a pure bronchospasm asthma episode in response to being outside all

day breathing in all that wonderful pollen (but I still plan to raise the

croup issue with our Pulm. at Kailin's July visit just to make sure, since

she was wheezing on the inhale as well as the exhale and it was a very

raspy, coarse wheeze).

Kailin went over a friend's house where there are cats on Saturday, and I

LOADED her up on her preventative meds before she went over (a neb.,

Benadryl, Tilade), and sent her inhaler along. She coughed while she was

there, but there were no ill effects afterwards. Phew. I was irritated

with our Pulm. because she had her nurse tell me it was a BAD idea to let

Kailin go there at all so soon after getting off Prelone after her last

asthma episode. There are some things that are just TOO important to cancel

(this was Kailin's BEST friend from school, and she'd never been to her

house before and was really looking forward to it), and I really had a sense

that she was doing well enough to handle it. Our pulm. just doesn't get it

sometimes (she doesn't have kids of her own).

As for Meagan, she's doing great at the moment :-) At our picnic yesterday

she got pretty wiped out from the heat, but that's standard for her during

the summer. I can never get her to drink enough, and she gets SO red and

tired out. So far this year she hasn't had any near-dehydration episodes,

and I'm hoping that's a thing of the past. She shouldn't have a salt

problem yet, since although she has a positive NPD (and two known mutations)

her sweat chloride level was only 37 in February, but still, she's always

had the toughest time staying hydrated, and she gets overheated so easily!

And as for Kailin's undiagnosed GI problems, she's had virtually NO stomach

pain, and NO bulky, slushey, or floating BM's for almost 2 weeks now

(remember, this is my child W/O CF, so she's not supposed to have all this

weird GI stuff). The problems stopped instantly when we eliminated caisin

and whey from her diet (in addition to all the obvious dairy products we'd

already cut out), and started her on Metochlopramide. Of course, we did both

those things on the same day, so I don't know if moving the food through her

stomach faster or the absolute absence of dairy is helping more, but between

addressing the atypical reflux (just after meals and none at night, with a

pretty normal PH test), and addressing what I now believe is a dairy allergy

rather than simply lactose intollerance, she's doing SO much better :-)

It's a huge relief to be able to feed her and not have her retreat to the

couch, moaning in pain, half-way through meals! (Did I mention our pulm.

recently insisted that all of Kailin's symptoms were from stress in reaction

to stress in our marriage (!!!). But then, of course, she had also insisted

Meagan was " too healthy " to have CF even after we knew she had both

mutations; I have NOT had a good few months with our pulm.)

bye,

, mom of Meagan 4 (cf, asthma) & Kailin 6 (asthma)