Thursday, April 28, 2011

{Bad words, bad words} + a 2 week wait

{Bad words bad words bad words} seems to be commonplace in my mind lately.

Here is a glimpse of the latest happenings....

Tyler needs to consume 1,000 calories a day. With his current formula concentration he should drink approximately 40 ounces a day. On a good day he drinks 25. Mister C wakes Tyler up during the night to dream feed another 120+ calories (5 ounces) into him. Sometimes he is successful, other times he is not. We compensated for the lack of calories by adding a little bit of oil to his green beans and soy diet. He hates soy. I spent time squeezing edamame out of the pods so they were ready to eat just in case he changed his mind. He hasn't. I cooked up some tofu stir fry drizzled with gluten free soy sauce. He hates tofu.

Now he hates green beans. Judging solely by his behavior, it appears green beans may actually be a trigger food.

So we go back to square one and he is only consuming vanilla Elecare. (Insurance is being a nightmare. That in and of itself can be a post.)

Life is grand. :)

----------------------------------------

We had a weight check with Doctor Laks yesterday. Tyler has lost weight since we saw her at the beginning of April. The current diet should have eliminated his eosinophilic triggers and his appetite should have increased. He should have put on a little weight but he is Tyler.

The GI wants to wait 2 weeks before we place an NG tube. His thinks giving Tyler a full month of "clean" foods will be beneficial, Laks thinks it'd be beneficial for Tyler to gain weight ASAP. She is not as happy with his lack of appetite as we have become. (Have I mentioned I love her?)

So we wait 2 weeks. Fingers crossed he gains weight or there will be two unhappy women (and a father) making some phone calls.

Wednesday, April 13, 2011

Patch Test Results

Tyler was happy today.




Happy because these things

were coming off.


The nurse came in to take the patches off. We were disappointed because initially he had more of a rash/reaction to the darn tape than the foods.



She removed the patches then outlined where the foods were and numbered them.


The nurse said Tyler was/is her best patient because usually kids cry and wiggle during this.



We have to watch these circle for 5 days, noting daily changes.


Then we waited to see Dr. Shimamoto.


Forget books, the cell phone has buttons I can push.



By the time Dr. Shimamoto got to us some of the negative patches turned positive.

The Results...

Safe foods
Egg (doctor isn't 100% certain about this one)
Soy
Green Beans

Could be safe but had irregular reactions
Milk
Peanut
Oat
Corn
Potato

Positive Foods (don't eat)
Wheat
Ham
Pears
Sweet Potatoes
Applesauce
Peaches
Bananas

Uber Positive Foods
Rice (Apparently he can't be as Mexican as we thought. What Mexican eats beans without rice?)
Chicken
Beef


Tyler's diet for the next 6 weeks will consist of Elecare (super expensive formula), green beans, and soy.

Don't be jealous!

Tuesday, April 12, 2011

Scratch Test

We went to the allergist on Monday to get the patch test patches applied. I am an idiot and somehow didn't realize they were going to do the scratch test at Monday's visit and not during the following appointment. Minor detail I suppose.

This is the scratch test.



Stripped down to a diaper, first clue bad things are in the immediate future.




"If I stare them down they won't hurt me." Didn't work but was worth a shot.




They mark his arm.



Then the other arm.




Tiger baby is marked up and ready to go.





video
They use a plastic stick with small prongs at the tip (dipped in food) and twist it against the skin. (Apologizes for the sideways video. After waiting 10 minutes for it to upload you are lucky you are still getting a post.)




18 different food samples + 2 controls


Wait 15 minutes.

Come back to read the results (=see how big the bumps are) and........

Nothing! Absolutely. Nothing. He reacted to the positive control (which he should have) but a big fat negative on everything else.

1 set of RAST results came back. He got a green light to eat quinoa, sweet potatoes, and pinto beans. Daddy is excited Tyler can "be a Mexican." (
I am not being racist, I am using my husband's words. If you ask DH what nationality he is, he will tell you he's Mexican.)

We asked the doctor if it is common to have negative scratch results. Unfortunately it can be common. Urgh! The good part is that we don't have to worry about anaphylaxis.

Then they started the Patch Test.




Patch Test = Food stuck on small metal disks and taped to your back for 48 hours.



"Help me, Mom! I've got tape stuck to my back."


Luckily the 48 hours is almost over because the smell isn't so pleasant. Nothing like ham, beef, chicken, wheat, soy, egg, pears, bananas, and 10 other foods taped to your back. Yum yum! :)

By the end......



He was done.