Sunday, October 10, 2010

Open To Suggestions

So the switch in formula seems to have made no change. He seems to be able to tolerate 2 oz of the new formula, but anything more than that, in formula form, comes shooting right back out at us. However, we can give him 2 oz of formula followed immediately by 5 ounces of pedialyte and it all stays down. Hmmm. I thought that maybe we just needed to build up to tolerating the new formula. After all, the GI doctor said that it could take a few days before its tolerated and then a few weeks on the stuff before the belly is healed. Its just hard when everything that goes in comes back out. It would seem that maybe the rare "inflammation of the belly" bug isn't the culprit here.

I'm going to lay the whole situation out once again, from day 1 when this started happening. If anyone has any thoughts, regardless of whether or not your a doctor, please let us know. We're willing to consider anything.

On Friday October 1, Drew started throwing up his bottles of formula. I think there were two instances on Friday. Things continues on Saturday and on Sunday. It wasn't specific to right after he ate. He could eat and 3 hours later throw it all up (and I seriously mean all. like heaving, shooting puke, flying across the floor) or it could happen nearly immediately. Wet and dirty diapers remained normal. By Sunday, and having kept just about nothing in, we were able to pinpoint the puking to a sitting position. He could jump up and down in a jumparoo and not get sick, but as soon as you bent him into the sitting position - carseat, high chair, just sitting on the floor - projective vomit.

We saw the pediatrician on Monday who ordered an Upper GI study where they give him something to eat that shows up on an xray. This showed a perfectly normal esophagus, stomach and start of the small intestine. His bowel was slightly distended but not concerning to the tech. Tuesday we were in here for an unrelated bronchoscopy (which came back clear!) and then on Wednesday with him still puking they decided he needed to be admitted for observation so that he didn't get dehydrated. He hadn't kept anything down since Friday.

Outside of the puking, he looks and is acting perfectly normal. Playing, smiling, wet & dirty diapers are normal, no fever, absolutely no other symptoms. If you bent him, he puked. On Thursday morning, the doctors looked at some xrays they took on Wednesday night and thought that he might have DIOS which is a partially obstructed bowel, common in CF. All the tests they did came back negative. They tested him for Rotovirus, CDIFF allergens in his blood, and a dozen other things, all negative. Well, CDIFF was tested 3 times and 2 came back positive, but since he is completely symptom-less (its a colon problem with terrible diarrhea) they think that hes either 1)just a carrier or 2)they got false positives with is apparently reasonably common in children until 1yr).

By Friday, the puking was no longer specific to position, meaning he would puke even if you didn't bend him. It was also almost immediately after he ate. There was no more eating and playing for 2 hours before puking, it was right away. We took him off the formula (yes, we tried switching from our normal Good Start to Similac Soy, no change) and gave him just pedialyte, which he is able to keep down in small quantities. We met with a GI doc on Friday afternoon and hes the one who suggested that it might be this weird inflammation of the stomach thing that could cause a temporary intolerance of the formula, so they switched him to Elecare, a predigested formula that should be easier on his system. He said that it could take a day or two for him to tolerate that so on Monday we could see where we're at and take it from there.

On Saturday, we tried a 4oz bottle of the Elecare which was promptly returned all over us and the floor. After that, there were two feedings of pedialyte which he kept down. Later in the afternoon, I gave him 2 oz of Elecare followed by 5oz of Pedialyte and he didn't barf! Before bed, another 2 oz of Elecare followed by 5oz of Pedialyte, still no vomit. This morning, Sunday, we tried 4oz of Elecare again and it all came back up. Three hours later, we went back to 2 oz of Elecare and that too wasn't tolerated. The only thing that goes down and stays down is Pedialyte, except for the small doses of Elecare yesterday.

The only other things going in at this point are his enzymes on about half a teaspoon of applesauce. We even tried giving him the enzymes (Creon) without the applesauce which yesterday he was able to tolerate those two feeds, but this morning was not. Everyone doubts that a half a teaspoon of applesauce would cause this big of a problem, and this morning without applesauce he still threw up - myth, busted.

He was on antibiotics for 1 month prior to this vomiting for staph that they found during a post surgery (aorta pexi) bronchoscopy. No one seems to think that would have anything to do with the vomiting, but I'm just putting it out there. It was Keflex, and he stopped it the morning before the puking started. The CDIFF thing popped into our heads because it was post an antibiotic treatment, but there has been absolutely no diarrhea.

I don't know who all reads this but if anyone has any thoughts or suggestions we are open to hearing them. Tomorrow they will do a motility study to see how quickly his stomach empties and then will start thinking about other tests that can help us figure this out. In the meantime, thanks for your continued thoughts and prayers. We'll keep you posted!

1 comment:

  1. Wow Erin, wish I had suggestions for you, poor Drew! Sounds like the hospital is being so thorough! Hope they find the problem, so they can start working on a cure. Our prayers continue to be with you all!