Friday, May 6, 2011

Some going ons....

First of all here's a couple of videos.

First of all I stayed at Asa's school yesterday for Field Day. They had all the pre-K's out in the morning but since Asa is in the afternoon class it was just his little class in the gym. That was probably best because they said it was pretty loud with the bouncy houses and tons of kids playing. Asa liked the bouncy house ok. It must feel pretty weird to be loosey goosey and the have the world under your feet moving too! But the video isn't about the bouncy house! After we got back to class he played on the computer. That has to be one of his favorite activities and a reason I think he'd love an iPad! I videoed him playing a new game using the touch screen or the button.

Next was taken earlier this week. After school Cade was filling up the Water Blasters and Asa was squirting them. He was soaked by the time he was done and it was cool but his laughter is priceless! I should have made one of Cade trying to be sneaky and shooting the dog because he knew I was videoing Asa. Boys!!

Now on to some medical news. While we were in Houston in March Asa had a ton of blood work done. We saw immunology for the first time ever. While Asa has been very healthy apparently one of his labs from our June 2010 appointment showed that he may have an issues so we were set up with Dr. Pacheco. She also ran allergy tests. While Asa has some soft signs of allergies (red eyes, rubbing eyes and nose, sneezing, eczema) it is nothing that interrupts life so I just assumed he has allergies to trees, grass, pets like the rest of us! His environmental allergies came back pretty normal. Imagine that!

But some food allergies popped up. Milk and pecans was in the High range. Soybeans was in the Moderate range and peanuts was in the Mild range. Asa's diet is 95% Pedisure that he drinks from a straw cup. Pedisure is a dairy based formula. It also contains soy. So it is a possibility that the Pedisure is making him sick. Could it also be contributing to his GI issues? I expected to see GI issues with a food allergy. Cade and Gracie both had bloody stool while nursing if I was on dairy. I simply eliminated diary and the problem went away. Once Asa started Pedisure we tested some stool samples and they were normal. He also had an endoscopy and biopsy right after starting it and both were mostly normal, no signs of allergies. And Asa was on an elemental formula for the first half of his life and he still had GI issues. So, what does all that mean?! It means that on May 27th we have an appointment with a local allergist for a skin test. Hopefully that will give us more info. We are also trying a diary/soy free diet. This is harder for a non-eater who relies on formula. There are several elemental formula options but they are pretty gross tasting. We could go back on the tube if he won't drink the formula. We haven't used the tube for feeding since October 2010. That's 6 months!!! We use it daily to drain and a few times for meds.

In my mind we'd see different issues if he was allergic to dairy. I picture the bloody stool Cade had or a swelling throat like you see in severe cases. But I'm sure an allergy could produce the gagging, puking, constipation the we are seeing and have been seeing for a long time. I guess the good thing about this is that Asa isn't a big eater so there are less foods to take away. He does like yogurt and that has to go. Also cheese slices. And peanut butter and banana but since the peanut came back we'll avoid that too. I can't say the he has ever had pecans before though!

As for the immunology came back wonky too. We can do a booster vaccine and then redraw labs in 4 weeks but after giving this some serious thought and talking with Asa's ped here we've decided not to do this. Asa is so healthy. He is rarely sick and when he gets sick he bounces back pretty well. I'm afraid to go messing with something that isn't broken! We can always revisit this if things change. Dr. P herself said she doesn't just go by lab results alone but looks at the whole kid. So we will take her advice and wait.

So now you can see that just the trip to Houston and the mito specialist doesn't really end when we leave that wonderful city! I should brag on our local team here too! When we couldn't have Dr. Koenig's labs done in Houston, Asa's ped set it up for here. Then one test had to be done special at the hospital and he arranged all of that. I talked to his about the immuno work up too and he has the same thought as me so we will wait on the booster vaccine. I am also in contact with the GI at Vandy on the formula stuff. Our ped set up the skin tests here. It really is a group effort on all of Asa's care. So far everyone is great at working together and they all seem to really take my opinion and thoughts into account too. I can't tell you how important I think this is! I am the person who is with him day in and day out. I do kinda think that I know him pretty well!


~Jana~ said...

Kim, Ask your GI about EO28splash by Nutricia I think. It is elemental. I dont think it has any dairy or soy. It comes in three flavors and Ly will drink all three of them. Tastes pretty good actually. ;)

Jenna said...

hi Asa
My name is Jenna and I came across your site. U are one brave courageous fighter and an inspirational hero. I was born with a rare life threatening disease. I looked like u had fun squirting your brother.