Re: Hi again, all

[Guest guest]

I replied to the list, except for one direct message I sent to someone about

religion, since it's supposed to be off-list. (I was curious about what a

Uniting church was...but I can't remember who I sent the message to.)

Shanna

Mom of Triana - age 2 wcf

Hi again, all

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