We had our consult with the GI doc in Buffalo yesterday. We learned a lot today (though no closer to knowing what’s going on with the little guy). She isn’t too concerned with his head lag, but is alarmed at his weight. She also said the method that Buffalo Children’s uses for it’s scintiscan is a waste of time. Since Nolan only ingested milk, the scintiscan is useless. They normally have a patient eat a compound with a known digestion time (usually oatmeal or scrambled eggs) to diagnose gastroparesis. So, we don’t really know if he has gastroparesis or not. It was basically a wasted test! She did note that his upper GI was normal, so whatever is going on is not caused by an obstruction, or a funny shaped esophagus.
She took down his history and she wants to scope him, because his weight is too low for his age (and he spits up and pulls food out of his mouth). He’ll have the endoscopy on August 12, with a pH probe placed for a 24 hour study for reflux. With his occasional spitting up, he’s got some symptoms that point to reflux but we haven’t seen it on any of the tests. Unfortunately, this means that he’ll have to stay overnight because they don’t want him pulling the probe out (it will be threaded through his nose into his lower esophagus). This will be done at Mercy hospital in Buffalo - she likes the probe equipment at Mercy better than the stuff they have at Children's.She gave us a case of “DuoCal,” which we are faithfully pouring into each cup of milk/juice that he drinks. Basically, we add the powder to his food or drink, and it adds 49 calories per packet. It’s a fat/carbohydrate powder with no electrolytes, no protein, or anything else that might irritate his system. It is tasteless and simply adds calories/fat. It also turns his apple juice white, which looks strange but apparently tastes just fine.
She did weigh him and he was 23 pounds, 0 ounces (so he’s gained a few ounces in the past few weeks, which is good)! He’s still below the curve, though. She ordered a bazillion stool/blood tests:complete metabolic panel, ESR (sedimentation rate), CBC with differential, amylase, lipase, urinary analysis with micro, celiac panel, GGT, T4, TSH, IgG/A/M/E and IgG with subclass 1, 2, 3, and 4. Then she ordered a stool evaluation for blood, elastase, alpha antitrypsin, pH, reducing substrate, and qualitative fat. We won't have any results until the end of August/beginning of September because she won't divulge test results over the phone. So we won't know the results until we have our follow-up a few weeks after the endoscopy.
I have to phone our local hospital to get the tests set up. Then we have a l.o.n.g. wait until we know what the results are.
4 comments:
Wow -- lots of tests! Don't you kinda get the feeling that he should have been referred to a GI expert like this a long time ago? You gotta wonder at our health care system. True, this is the same health care system that provided my son with a CI in relatively short order and at fairly small expense to us, but it's a very hit or miss system. And when it's a miss and it's your child, then it's beyond frustrating. Well, enough whining -- I hope you figure everything out soon.
Leah ... I'm sending you huge hugs! What you have been going through is enough to make anyone crazy. I pray for you that this is THE DOCTOR. It's insane how you can get one answer one day, turn around, and get a completely different answer from a different PROFESSIONAL. Very scary. You are doing such an excellent job handling all this and if I was closer I'd take you out for girl's night out. Keep following your gut. Nolan's such a lucky little man to have you!
I hope you find a relieving answer soon! Keep up the good work! You are a great mom! And Nolan is such a cutie!
Julia, I have to agree. Many times, our health system works wonderfully. Especially when there are established protocols- our evaluations relating specifically to hearing loss have all been wonderful. I think that is because there is an established protocol for evaluating kids with congenital hearing loss.
Our pediatrician chose to ignore the protocol for evaluating failure to thrive kids, and I think that's where everything got derailed. Our GI doc was quite frustrated, because any kid who falls from the 60% to the 3% needs an evaluation. The fact that it took 11 months to get one is ridiculous (and we still didn't get a referral from the ped- it was from our ENT)! Oh, well- we'll take things from here and hopefully we'll have the little guy eating again soon!
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