Peeper Update: Looking Good
Our trip to the doctor went really well. We didn't get any definitive answers yet (waiting on the labs to come back) but everything the doctors said was very encouraging.
The blood work they are doing will tell us her current tyrosine level and the urine test will give us a definitive answer as to whether or not she has tyrosinemia type I.
First, there's about a 99% chance that her tyrosine levels are elevated just because she's a preemie, and the enzyme that breaks it down isn't yet mature.
There's about a 1% chance that she actually has tyrosinemia type I, but if she does, it is controllable with medication and a low-protein diet.
If she does have it, I think she would start medication now, and would continue getting primarily breast milk (I would not need to alter my diet, even though I typically try to eat high protein' I asked the doc about that repeatedly) and any formula supplementation would be a special low-protien kind.
However, assuming she does not have it, if her tyrosine level is low, we do nothing, and maybe retest in a couple of months to be sure it's cleared up.
If she doesn't have it, but her tyrosine is still high, she'll start on vitamin C, which is a co-factor for the enzyme that breaks down tyrosine, so it would help her to clear it out sooner.
Peeper handled the blood draw (in her little arm) pretty well, but refused to give us a good urine specimen.
They way they get the specimen from a baby is to use a urine bag, which has supposedly-appropriately-shaped stickies to put it on her, sealed tightly around her girlie parts, to catch then the pee when she goes.
We went through about three urine bags, and each time it came loose before she went, and she didn't put more than a couple of drops in the bag.
They've sent us home with a couple, and we'll try again, and just turn the urine in at our local lab.
At this point, we may just have to hold her over the specimen jar (into which we're supposed to put the bag) and wait.
I hope that doesn't delay the results too long. (We were originally told that we'd hear back on Wednesday or Thursday of next week.)
Besides all that, the trip went pretty smoothly - especially considering that we were travelling with an 11-day-old premature baby!
Peeper did very well on the train (slept the whole time), I managed to pump in the car twice, and thrice at the hospital, and we got lots and lots of attention from everyone who saw her.
A (mostly) good time was had by all.
Wonderful!
ReplyDeleteUm, I know that she has been kinda busy, but did Peeper take any pics of her big city adventure? :D
ReplyDelete(I don't mean to be pushy, but I just counted and I only have 75 pics in my rotating Peeper screensaver...)
lol - we didn't take the camera with us, but after we got home, we were saying we should have.
ReplyDeleteDon't worry, though, we're taking more pic all the time, and will "publish" another set, soon.
Now, I should probably go back and proofread this post. I was pretty much asleep (at the pump) when I was typing it.
I'm so glad it's looking so positive. I bet little boy babies are far easier to collect urine specimens from. Good luck pee catching!
ReplyDeleteI've had to get urine samples from both my son and daughter. Neither is easy. Be prepared to get peed on. No matter how careful you are, they always leek. You'l know you have a sample when you lap is also wet.
ReplyDelete