Monday, May 24, 2010

Update and Article

Kyle seems to be doing better today. Although, he is still not really eating anything. Poor baby. I hate this.
I talked to his allergist today who was out of the office. He said to wait 2 weeks to give him dairy again, but to call him first so we can talk about it. He also feels it's probably a stomach bug because he was running a fever. I guess I can live with waiting two more weeks, but I can't help but get nervous about more vomiting again!
I think this next time I give him dairy, I'm going to do it in a more controlled way. Like, trying to get Kyle to drink x number of ounces of just whole milk for a week before we call it "safe". I don't believe giving him as much as he wanted was the right way to go. Hopefully if I control the amount a little bit more, and he's still doing good after a week, then maybe we can go on and introduce something else like cheese, or yogurt.
Anyway, I hope this link will work, here's another article that discusses non IgE allergies. Not a ton of new information here, but it at least calls for an awakening amongst doctors to recognize this, trust Moms that they know what they're talking about, and says insurance companies need to start paying for the formula for these little ones. Amen.
Go here to find the article.

Sunday, May 23, 2010

Possible Reaction?

I'm really TRYING to remain positive and calm, but I'm really stressed too.

As you know, we trialed Dairy for the first time in the hospital on Tuesday (the 18th). DS only had 50 ml of whole milk that day. We stuck around for 6 hours and nothing happened. When we left, I asked the what now? How do we proceed? He said, "Give him as much as he wants starting tomorrow" I responded, "Really? As much as he wants?" And he said, yes.

So, although I had my doubts, we started to offer him more dairy the next day. He had a string cheese....still nothing. Then, some milk in his bottle instead of formula, nothing. So, the next day, we tried yogurt. Still doing great. No signs of fussiness, loose stool, or not sleeping well. He was doing great!

Fast forward to day 5, which was yesterday (Saturday) morning. He was fussy as soon as he woke up, but had slept through the night great. I fed him his normal breakfast of cream of wheat with fruit. Waited about 45 minutes to give him a bottle of milk. He only drank about 4 oz. Still kind of fussy, walked into the other room, and projectile vomited all over the floor!!! I immediately thought, crap. My husband said not to worry, maybe he just ate to much. We cleaned him up, but he was extremely fussy after that. Wanting to be held non-stop, and not a happy guy. About 2 hours later, we decided to try and give him a very light lunch. He ate a little bit of ham and some fruit, but was obviously tired and not wanting to eat. Still fussy. So, we put him down for his nap with his formula. He wouldn't drink it. Then, after being in his crib just a few minutes, he vomited everything up again. Then, he did fine the rest of the day. Still very fussy, but no more vomiting. We obviously stopped all dairy that morning. Then, he ate a TINY bit of dinner, drank his whole bottle at bedtime, and went to bed. When he woke up in the morning, I went to get him and he had vomited in his sleep at some point.

It's the weekend, so I can't talk to the allergist, but I'm hoping this is a stomach bug. However, I just don't think so. My gut tells me it is the milk. I know it seems crazy when it didn't start until day 5, but Kyle's first reaction to rice was similar. Keep us in your prayers, and I'll keep you posted!

Wednesday, May 19, 2010


Kyle passed dairy!

I'm a little apprehensive still. The doc gave us the OK on "as much dairy as he wants", but I still feel a reaction could happen. Although, I think it's a slim chance.

Kyle drank 50 ml of whole milk over a one hour period. I convinced the doc that he was OK without an IV. This was a risk I was willing to take because Kyle's FPIES reactions have not been that severe in the past. So, after that, it was just waiting. Lots of waiting.

We stayed in the hospital for 6 LOOOONG hours. But, luckily, we were able to walk around, and that entertained Kyle for most of the day. We ate at the cafeteria for lunch, and he even took an hour and a half nap in the office in his stroller.

We got the OK to trial soy and chicken at home....I feel good about that with the way this trial went. I think it's a little overkill to do it in the office every time. Some kids with more severe reactions need it. And, we will do rice/oats in the office when that time comes after Kyle is 2. I think with milk, it was good to do in the office too since we had no idea what the reaction would be.

Kyle's reaction to rice took several days before vomiting started. I don't think that will be the case with milk, but I'm still going to go slow.

However, I gave him a string cheese for lunch. He gobbled it right up! He loved it!!

We are happy. Yogurt, cheese, and we come! :)

Monday, May 17, 2010

Milk Challenge Tomorrow

Oh my gosh.

I am so scared for tomorrow.

We are FINALLY doing a milk challenge for Kyle. My sweet baby boy.

Lately, he's been doing so good, we've been giving him lots of new foods, but to get the OK on dairy products would be....well, just amazing!

I am scared of them putting an IV in him, I'm scared that he won't pass the challenge which would be SUPER bad news, and I'm scared of being alone in a doctor's office for 6 hours trying to entertain a 16 month old.

I cannot wait though to give him his first taste of cheese, yogurt and milk. All things which children should not be deprived of!

I am excited for the prospect of no more formula. At $21/can that lasts about 3 days, it's time to get on with it.

I don't know how I'm going to handle it if he doesn't pass though. Please pray for us. This is a big deal for our little family.

Monday, May 3, 2010


Sometimes I feel like a first time Mom all over again with this little, FPIES child of mine. It can be so frustrating.
He is getting bad diaper rash, and mucousy diarrhea again. I think it could be strawberries? But, who really knows. I mean, he eats so many foods now that I just can't pin point it. I try to take things slow and as my previous post mentions, sometimes we don't. But, they start to make such great improvements and then you just go full speed ahead.
Today, he did not really want breakfast or lunch, but then for dinner, he ate this GIGANTIC feast. I swear he ate as much as I did! I am perplexed by these diapers though. I really can't figure them out. Maybe it's the strawberries, maybe not. I'm just tired. Is that bad to say?
I'm tired of studying poo, I'm tired of worrying, I'm tired of my baby boy pointing to the milk carton and whining, and I'm tired of denying him from everything.
It's funny how we have good days and bad huh? Compared to my post a couple of days ago, you'd probably think I was writing about two different kids. But, I'm not.
I'm just writing about one kid that I just can't figure out.
FPIES sucks.
I'm not chickening out of the dairy trial. Nothing is going to stop me from doing it this time!