Thursday, March 22, 2012

It's about time for another medical update

I don't think I've given much of an update on Caleb's medical status since this post. So it's about time!

Caleb seemed to handle the milk-based formula just fine. After a month or so of switching formula, his vomiting decreased drastically, so we introduced pears. They looked good. So we introduced peaches. They looked good. So we introduced barley infant cereal, which he refused to eat because, hello, what two-year-old is gonna like that texture? So we forgot about barley. We introduced beef. His vomiting increased a bit. So we took away beef and introduced carrots. The vomiting was still just as bad. So we took away carrots. [Two days ago Caleb saw carrots in the fridge and asked for them. I said, "No, you can't have carrots. They make your tummy hurt." Then yesterday, as he was eating his lunch, he randomly said, "I not eat carrots. They make my tummy owie." Smart, cute, sad little guy.]

So the GI doctor suggested another food to try after taking away carrots, and I suggested giving his body a week or two to have a break to make sure that the vomiting was related to the beef and carrots, and not to something else. And guess what happened in those two weeks? The vomiting stayed the same.

So we've only added two new foods in the last four months.

So. We are stuck between a rock and a hard place. A catch-22. It seems that his body is rejecting the formula again, like it did with the hypo-allergenic medical formula. His honeymoon period with the new formula is over and we don't know what to do next. It's possible that he is having an allergic reaction to the milk proteins in the formula, but my mommy gut tells me that's not the case. But it may be worth it to do a scope, anyway, to make sure that the eosinophils haven't returned...but scopes are so hard on poor Cal. He doesn't do well with anesthesia.

So I suggested trying a blended diet to see if his body would be happier with more real food and less formula. The GI doctor happily agreed. We did it for about a week, and he was still vomiting about once a day, and swallowing hard after each tube feeding, showing an effort to keep the food from coming up.

In that time he also had a lot of behavioral vomiting. Every time he would be exposed to a group of two or more unfamiliar people, he would get scared and automatically vomit. After vomiting, he would be a social butterfly. He just plain feels better on an empty stomach. This kid would love it if he could just starve.

He also vomits when he cries. And he's two. He has tantrums. It's not pretty.

But he continues to vomit in his sleep, so it's not entirely behavioral.

So, we're trying another medication to control the vomiting. I think this is the sixth or seventh med we've tried for this...? It's hard to remember. He's had a few vomit-free days, so that's been nice. But he's also been sick (with a stomach virus and now a cold) so the vomiting has increased because of that. His lips are currently so dry they're cracked. :(

And even if we can get the vomiting to disappear with this new med, will the med mask the symptoms of his allergic reactions if we introduce more new foods? See what I mean about the rock and a hard place? If only we could give him more foods then he wouldn't need as much formula and hopefully the vomiting would stop. But we can't give him new foods until the vomiting stops...UGH!

The next thing that I want to try is giving him rice milk and stop the formula all together. The only things in rice milk that he isn't already eating are sunflower/safflower/canola oil. Rice milk is very low in calories, so we would have to use the oils to add extra calories to his other foods, and give him a multivitamin. And probably buy a $450 blender so we can blend up real food to put through his tube to give him a more balanced diet. At least as balanced as nine foods can get.

So that's where we're at. At least he's only throwing up once a day, instead of 3x a day, like before. If it gets worse, I imagine the GI doctor will throw in the towel and say that he feels all together better when he eats foods that he's allergic to than when he drinks the formula that makes him sick, so we will start to give him any food, without restrictions. If it comes to that, Nate and I have decided that we would see about seeing the world's best specialists in Philadelphia. I've thought about bringing him to someone in Mayo Clinic, so we can see my family on the same trip...but Philadelphia has the world's best, and Caleb deserves the best! We need to get this little guy feeling better.

Oh, and he had a weight check at the GI's office--22 lbs 13 oz with a t-shirt and a wet diaper on. He was 21 lbs 1 oz four months ago. He has gained enough to stay just as far below the curve as he was before (something like -25th percentile) but he is no longer playing catch-up, like he was before. His first few months with the tube and he was gaining a pound a month! Then the next few months he was gaining half a pound a month. Now he's slowing down even more. It wasn't a horrible weight to be at, but it would be nice if we could get him to gain more. As always.


Heather said...

Thanks for keeping us up to date. We'll be praying that his body accepts the rice milk/blended diet. It just seems like a 2 year old's body would like that better than formula, huh? Seth loves to look at pictures of Caleb even though he can't say his name yet. But he does say "baby" (and even signed it today) when he sees Russell's picture. Love you guys!

Megan said...

Wow so much information. You are amazing to keep track of all of this. We will keep praying for answers. Seeing a Dr in Philadelphia seems crazy but I am glad you are willing to do that for him. I hope it doesn't come to that.

Nana said...

I'm all for getting him to Philly. I want that boy well as much as you do. Frustrating.

Katrina said...

I'm so glad you posted to keep everyone else updated. You need to have others to support YOU through everything you are doing for Caleb. We'll for sure keep you in our prayers that you can know the right thing to do to help him feel better!

Coffee Mama said...

If you really want off the formulas one of the things CHOP may recommend is steriods. Are you completely against that? Because I hear they work wonders! They allow the child to tolerate most foods and keep the eosinophils away and from causing damage! Our GI is against it, so we are trying to find a new one too.