Tuesday, September 04, 2007

One Test Down

The day I've been dreading for over a month has finally arrived... Grace had her lactose intolerance test today. If you're not familiar with what it involves, it's a test where you have to drink a lactose solution, and in Grace's case it was sugar water that was equal to 4 cups of milk. Then they test the breath for hydrogen and methane gases. If hydrogen shows up in the test, then you're lactose intolerant, meaning your small intestines don't produce enough/any lactase. Lactase is the enzyme that digests the milk sugar, lactose.

She is definitely and FINALLY officially diagnosed as lactose intolerant. The nutritionist I spoke with after the grueling morning (we were there since 7:45 AM and left I think at 11:30 AM) wants her to also now test for a whey (milk protein, aka casein) allergy, which could explain why she's as sensitive as she is and has trouble with even a slice of real cheese.

It's just such a relief to finally know 100% for sure, especially since our GI NP (gastroentorologist nurse practitioner) didn't think Grace was truly lactose intolerant. Now she HAS to let us set up the appointment to talk with the GI doctor. I feel vindicated. When we were waiting for the initial part of the appointment where they sit you down and tell you what to expect from the test, Grace over-heard the nurses talking behind their little reception window about waiting for the lactose solution, and that Grace was already waiting for it. She comes over to me and whispers "Mommy, I think I'm going to need my Lactaid medicine!" She wasn't allowed to eat past 6:00 PM yesterday, and wasn't allowed any drinks except clear fluids between 6 and midnight. This morning, no water, no breakfast, nothing. She was NOT happy, especially since I woke her up an hour and a half early. She was crabby, but I did manage to get her to drink the solution. It took 20 minutes, but she did it. Then every half hour, they would test her breath for the presence of hydrogen & methane. The poor kid, she was cheerful, mainly because a lot of babies were coming in to see the nurses and checking severe reflux. They started getting antsy around 10:30, but were still being good. When the test was over, the nutritionist asked her if she understood what it means that she's lactose intolerant, and Grace said "Milk makes my tummy sick, and I can't have it unless it's special!" It took such effort, and I was shocked that she said all of that to a direct question from a stranger.

I felt horrible, despite Gracie's positive mood. She's usually pretty quiet and reserved in the morning, needing time to prepare for her day and work up to a good mood. During the appointment, she would lay down in the wagon or on a couch, but then whimper and get up to move around. I could tell from her face and her sounds that she was feeling nauseated. It only got worse in the car, but she was definitely hungry. I let her choose what to have for lunch, so we stopped at McD's for a hamburger for her and nuggets for Anneliese. She inhaled her burger and fries, pausing only long enough to ask "Mommy, dere's no cheese on dat?" When she was done, she laid still for a while then sighed "Mommy, I feel better."

Juliana started 2nd grade last tuesday and so far loves it. Gracie starts her 2nd year of preschool on wednesday, and we have a meeting with the occupational therapy team for her on thursday and I'll be formally requesting that they evaluate her AND give her special services for the Asperger's disorder. It's like pulling teeth with them. I'm not letting up, though.

And that's my tuesday.

1 comment:

Megan said...

I'm sorry to hear that her test came back positive, but am relieved for the both of you that you now know for sure...and that you have your vindication and will now finally be able to see the specialist she needs. (Haha, I bet that run-on sentance made you grimace :p)

As far as preschool goes, it's great to see you persevering in getting her the services she needs. For us it was a long road, but after waiting a year for a support worker, Cayla has one in her preschool with her all day, and after 2 YEARS she finally has regular speech therapy. It may be slow, but eventually things get moving along :)