Hi again, all

[Guest guest]

Well, I tried to answer on-list e-mails the other day, but the like 15 messages

I wrote didn't show up on the list...guess they are lost out there someplace in

cyberspace. So I've switched which of my e-mail addresses I read the list from,

since this account is a little less flaky than the Yahoo account, and it doesn't

matter how long I take on my messages either.

Anyhow, I want to thank everyone who responded to my message about my daughter,

Triana, who is a newly-diagnosed CFer. Some of you asked questions about why

she was sent for testing, and diagnosed and all. I'll just re-re-re-type the

whole story in this message, and try to cover everyone's questions:

Triana was born in the summer of 2000 after I went through 30.5 hours of labor.

She was only 6 days early and weighed 5lbs and 10oz. She was put in Neonatal

ICU a few minutes after she was born because she had a low sugar level. It was

24, but came up to 74 after she was put on an IV. What kept her in the NICU

was that she started having problems eating. She'd nurse, or take formula, and

get it down, but the majority of it would kind of hang around in her stomach,

making it distend. They thought she might be lactose intolerant, so they

finally took her off that, and put her on the Pedialyte every 3 hours. (She'd

get hungry about every 1 hour or so, and get really mad, and even at that early

stage would be up on hands and knees when really ticked off...she'd be screaming

pretty good, too...) They had her on oxygen as well, with breathing treatments

every 3 hours because the oxygen was drying out her sinuses. In addition to all

this mess, she had jaundice, so she was stuck under a bili light and having to

have " shades " velcro'd to her head...which annoyed her immensely. Eventually,

they decided that maybe she had some meconium blockage, so they did a berium

enema so they could x-ray that part of her to see if there really was a

blockage...and well, you know what enemas do...it worked really well. She lost

about 5.5 ounces of poop...as the nurse put it, she " pooped all over Radiology " ,

taking out 3 diapers and several sets of blankets. After a few days of making

sure she could feed properly and all, we finally got to go home.

Now, she's been pretty small for her age since day 1, and small children run in

the family (I was 25 pounds for 2 years when I was a toddler, and was very

skinny until I hit about age 18). We weren't really worried about her size,

since she ate very well and was growing. Even her pediatricians weren't really

worried about it. She started out below the bottom of the growth chart, and

stayed below it...no big deal. And since she's our first child, we knew nothing

about what diapers were really supposed to look like. I did stop actually

letting her nurse, since she would nurse for 6-8 hours if I let her. We found

it worked much better for me to pump, and for us to feed her out of a bottle

instead, because she'd down a bottle so very fast and then go ahead and go back

to sleep. She hasn't had much in the way of lung problems, only some ear

infections. (Rampant ear infections also run in the family...I had them at a

rate of one a month as a kid...hers were only one ever couple of months or

so...we figured no biggie, it just runs in the family. We'd go get some

antibiotics for them, and sometimes this fixed it and sometimes it didn't.)

No big deal until the doctor mentioned that she wasn't gaining much weight at

one of her check-ups. I mentioned that she seemed to have pretty soft stools,

and was that normal? Well, we talked things over, and the doctor decided I was

giving her too much juice. So we were limited to 4 oz of juice per day, and 2

cups of milk...everything else being water, or the occasional Kool-aid. Also,

we were to add Carnation Instant Breakfast to her milk to try and double up her

calories. We tried that for a while, without much change in the way her poops

looked.

A few months later, she started back to her Mothers Day Out program, which only

runs during the school year. She goes to that on Tuesdays and Thursdays for

about 5 hours. Her new teachers for the year kept complaining about the fact

that she got poop all over her outfits whenever she went out to play in the yard

outside. (They don't check them constantly while outside, so because Triana's

were loose, they escaped her panties before they got back inside.) They asked

me to stop using Pull-Ups and go back to using diapers instead, to keep it all

from going everywhere. So I sent diapers to MDO with diapers instead. That

didn't work either. Her teachers call me while I'm at work, complaining about

her dirtying her clothes. (Didn't really matter...a good baby wipe will take

that right off a kid...and hey, kids are washable...imagine that! And she

always had extra clothes in her bag.) I got really mad at the teacher, but

didn't say anything to her. After I calmed down, I realized that there must

really be something different about Triana's bowel movements, since surely the

woman wasn't calling all the other parents every day about *their* kids' poop.

So, we called the nurse and asked about the possibility of Triana being lactose

intolerant. We took her off of milk products for a week, but saw little

improvement. So we called the nurse again, and she said to come in and have

Triana tested for lactose intolerance. We made an appt. with her pediatrician.

Got to the office, and explained to the ped. why we were there. She explained

that there wasn't a test for lactose intolerance, only for milk allergy. The

only thing to do was to keep her off milk products for 3 weeks, and then

re-introduce them to her. She had two " really major " ear infections, also. But

regardless of that, what was worrying the doctor was the fact that my daughter

hadn't gained any weight since her last visit, which had been a couple of months

previous. She said we really needed to look at that, and that Triana was

falling off of her weight curve...not just the general weight curve, but her

own. So she mentioned that there were several things she wanted to test for.

First off, we'd go ahead and keep her off the milk products in case it was

lactose intolerance, in which case she should start getting more weight once she

stopped having diarrhea all the time. (She was on Pediasure the whole time she

wasn't on milk, so no loss of nutrients, just a loss of lactose.) The second

thing she wanted to do was to take stool samples, and test them for a possible

bacterial infection. And she said that if that didn't work, then a few weeks

later, we'd test for CF.

That stopped me cold. My sister had been informed only two months prior that

she was a carrier for CF, when they did a battery of tests on her because she's

pregnant and considered high risk due to asthma and a family diabetes history.

I felt kind of sick right then, because I knew that since my sister was a

carrier, there was a good chance that I could be too. This had *never* entered

my mind as possibly affecting my daughter, because as far as I could tell, she

was as healthy as most 2-year-olds, just a little thin. I knew that if I ever

got pregnant again, that I'd need to be tested just to make sure, but didn't

really worry about it since I knew that the odds were against my husband also

being a carrier. (My sister's husband, by the way, is not a carrier so far as

the tests they gave him have determined.) I told the doctor that my sister was

a carrier, and she looked kind of grim, but still said that she didn't really

expect that to be the problem. However, that moved up the need to get her

tested just in case. So after a little bit of discussion, we decided to get it

done as soon as was possible. The doc made the appointment. This was a Monday

night that we saw the doc, and the appointment was on Thursday morning. I

didn't eat much from Tuesday through Thursday, out of nausea and stress. I

think it's the only time I've been so stressed I couldn't eat. We told my

husband's family, who I think really expected it to come up negative, and

thought maybe I was just overreacting when I told them she actually had some of

the symptoms. (They're very down-to-earth good people, and like my husband,

they tend to have a wait-and-see attitude about stuff...I tend to learn as much

as possible to prepare myself for the worst.) So Thursday morning, we went and

had the test done. The lab at the Children's Hospital (which is where the local

CF center is...and it's only like 30 miles from my house, thank goodness!) told

me to call Triana's pediatrician at 1pm if I hadn't heard from them by then. So

about 1pm I called them and left a message. And about 2pm I called them and

left a message. About 3pm they finally called me. By this time, I was already

expecting what they told me, since it had taken them so much time to get back to

me. Her chloride count was high, 97 or so, so they were pretty sure of the

diagnosis. We had to come in again on Friday morning just to be sure with a

second test, but they were pretty confident that it was CF. The doc told us to

bring a bag for Triana as well, since they'd probably hospitalize her

immediately. The second test was just as positive as the first, about 94. They

admitted her to the hospital, and thus began our two weeks of living at the

Arkansas Children's Hospital...but that's a different story.

Anyway, we're still waiting to find out what her mutations are...lab results

should be back in a couple of weeks. My hubby and I also got tested to see what

our specific mutations are so we can inform family members. My sister was told

she carried " the most common " mutation, but nothing more specific. We're doing

therapy a couple of times a day (I'm so tired of the words " I don't want

ter-a-py " and " it not gonna hurt " and " I want my blankie " but I know she'll

eventually settle down, and we won't have to struggle during every session).

She gets Albuterol for all her updrafts, and Pulmozyme for her nighttime

updraft. She's also getting her enzymes with meals, and her daily vitamins and

shakes and stuff. We're about to go do therapy now. Anyhow, figured I'd fill

everyone in on how things were going and how we got where we are.

Hugs,

Shanna

mom of Triana - age 2 wcf