Tuesday, March 25, 2008

More Gastro Fun!

I've been meaning to update about this for more than a week now, but as all of you bloggin' mommies know, finding the time to write everything down in a somewhat cohesive manner is not always easy.

On March 13, I got the call from the girls' GI doctor. If you recall, Grace was cleared of Celiac Disease as well as any sort of food allergies. She was given the title of "Underweight" and will be seen every few months to check her progress.

Faith's diagnosis was up in the air, though, so we went and had blood work done. The doctor told us that if she tested positive for Celiac, we'd get a call. Otherwise, we'd discuss the results at our appointment on the 10th of April.

When Dr. Elizondo's number came up on Caller ID, my heart skipped a beat. This was it. The call that would tell me that Faith had Celiac Disease, that she'd have to be on a strict diet for her entire life and that our entire family would need nutritional counseling to manage this.

I almost let it go to voicemail. I just didn't want to hear it.

But I picked up and talked to the receptionist, knowing full-well what she would say.

To say I was shocked by what she said is an understatement.

Faith does not have Celiac Disease. She does, however, have an allergy to a protein in cow's milk.

Praise God! I just couldn't believe it!

I was so elated that I barely had time to think about what this woman was saying. Faith would need a special formula, they had samples for us, etc, etc.

Since I wasn't talking with the doctor, I wasn't able to get many questions answered. I guess I'll have to wait until the 10th to do that. But I was able to go pick up some of samples of formula from Dr. E's office in order to "test out" and decide which flavor our little Roo likes the best.

So we are adjusting to this new part of our lives. It seems relatively small -- just mix eight ounces of formula every time you would serve her milk. Simple, right?

Wrong.

Faith hates the stuff. It's not anything like cow's milk, as it's 150% of the vitamins and minerals she should get daily. It's also almost completely broken down, so her body doesn't have to work to process it. These things alter any yumminess that might have been present in the thick liquid.

And to top it off, it's very high in fat and calories -- 250 calories in six ounces! So it's got a sort of greasy quality to it and little globules of oil can be seen floating in it. Ewwwwww... I wouldn't want to drink it either.

Faith's no dummy. She knows that Gracie is getting regular milk while she is getting, "special Faith milk." Calling it "special" has not helped out one little bit, either.

So when Grace gets a cup of milk, Faith just howls for some. I hand her the formula and she hurls the cup across the room. I've tried all of the flavors -- vanilla, strawberry, chocolate and tropical -- and have even added extra chocolate syrup to them. No dice. It's just not going to happen, I fear.

So I don't know what to do. Has anyone else had their kids on Neocate Jr or something of the like? Did they hate it like my kid hates it? What did you do?

I'm anxious to get to Dr. E's office, as well, and ask all of my questions. Will she grow out of this? Do we need to do a completely dairy- or milk-free diet? What if she won't drink the formula? The list goes on and on...

Until then, though, I'll have to beware of projectile sippy cups.

Moving on...

Easter was a great holiday around here. My dad got here on Friday and on Saturday Todd took the girls to Yoakum to pick up Devin from his parents' house. I calculated that it was the first time I was alone in the house in 17 months. It was sheer bliss.

I took a little bit of time for myself to read and watch some chick TV (You-know-what and the City episodes!), but I also got a lot done around the. Very invigorating.

We had dinner here at my house that night and made it to 9:30 Mass on Easter morning. It was a fantastic celebration of the resurrection and it truly helped me get into the spirit of the day. I love Easter...it just makes me happy and thankful to be a Christian.

After Mass was an egg hunt at ZZ's house and then some unbridled candy-eating by all seven kids. It was a sugar-rush massacre and we finally got home to get the kids down for a nap. Faith and Grace snoozed well, but Devin managed to keep Todd and I up. No rest for the weary.

Afterwards was back to ZZ's house for a big Easter meal and playtime. By the time the day was done, though, we were exhausted. We all tumbled into bed pretty early and the week began on Monday. Ho hum...

I wish I had more exciting news, but the thrill of the moment is finding new and innovative ways to get Faith to drink her formula. Any suggestions are welcome. :)

10 comments:

Christi said...

Could you gradually replace real milk with the formula until she is all the way on the formula? I am assuming she can drink it at all...

Good Luck!

Osh said...

oh, I feel so bad for her! Evan was allergic to the milk protien as well...we figured it out around 6 months old...and that formula was super expensive! And he hated it too.

Anne said...

I don't know if this would work or not, but have you thought of taking Faith to the store and letting her pick out her very own "special" cup with a "special" straw (you know, the really colorful ones that twirl around and around)? I just know that when Emily doesn't want to drink milk, we break out her "special" straw, and it usually works. just a thought! Fu

Claremont First Ward said...

I'm SOOOOOOO glad she doesn't have Celiac Disease. BUt, how frustrating that she won't touch the formula......have you tried adding chocolate powder like NEsquik? Happy Easter......late.

Laura said...

I am so thrilled for you! Thrilled! My girls are allergic to the protein in cows milk too. I am not sure if ours in the same or more mild etc... All my kids have had this allergy and eventually outgrown it (well except the twins). We actually had them on Soy Enfamil till last year and they loved it. Can she have that? Do you warm up what you give her? That helped us a lot.

Do they think she will outgrown it.

Again congrats on the good news. I wish that is was nothing but having lived with life without dairy I know it can be done. It's a real pain not having any dairy but its a lot better than the other thing.

I am glad you had a happy easter.

Good luck!

Alicia said...

Erin--
Tate couldn't do milk protein either when he was a baby. We had to switch his formula a couple of times and he flat out refused it each time. So, we had to do a gradual switch. Initially, we'd put like 3/4 of whatever he was used to with 1/4 of the new stuff and we'd gradually work up to 100% of the new stuff. I remember that it took a few days, but not as many days as I'd expected it would.
Just curious, is she off of milk and soy or just milk? (Lots of kids who react to milk also cross-react to soy). If she can do soy, there's a soy formula/drink that is probably a bit tastier than the Neocate that Tate took for a while. Also, I'm sure you've realized by now that milk hides in a lot of places. The Food Allergy Network has a lot of great resources to help you navigate through learning about the milk allergy. www.foodallergy.org Sorry about the food allergy diagnosis . . . :)

Casey's trio said...

I'm sorry I don't have suggestions but just wanted to say I'm happy that it wasn't Celiac's disease. Hope the GI doc will have some suggestions but that's 2 weeks away.....

Jen said...

Hi there!
New to your blog, I was actually searching for other Celiac Blogs. My daughter does indeed have CD and we returned today from another visit to Children's hospital in Boston.

As for the milk; yikes, that's a tough one! Maybe in a big girl cup she'll drink it? How about a little dairy free chocolate sauce? (I realize this is high-sugar bribery but you do what you can). Good luck!

Meg said...

the chocolate soy milk (various brands) is quite yummy if you are at all thinking of flavoring the formula. i'm so relieved to hear faitharoo is o.k.!!

Anonymous said...

Josie adores vanilla milk... You can get soy vanilla milk at the regular grocery store... maybe that will work? Or at least help? They also have rice dream (which is like milk too.) Best wishes!