Many of you know that I’ve my hands full with Trevor ( my failure to Thrive baby) lately. It seems we’ve had quite a few Dr. appointments since October and I’m not sure how long ago I’ve updated my friends and family, so here’s an update!
We just had another visit from the nutritionist on Monday. We are supposed to see her 2 times a month, but we had not seen her in a month because of some kind of paperwork issue.
Trevor had been sick last week with the flu and has not been eating well at all since weeks before that. And, he has been having some texture issues again since around Christmas. So, I was not expecting much of a weight gain. He did gain 2 oz – he is now 22 lbs 14 oz (at 30 months). The brighter side of things is that he grew 1 ½ cms and the nutritionist said that 1 cm is average for a month. So he has steadily been going up height percentile. He started out at around 3% percentile a year ago, and has steadily gone up to where he is now at just over 15 percentile in height. This is good and bad. Good that he is growing taller, yah! But of course it makes the weight to height ratio worse as his weight is still under 3rd percentile for weight. The good news is he is almost on the chart for weight. I was so happy last month to learn that his body fat has come up. When the nutritionist first evaluated him for Early Intervention almost a year ago, he had only about 5% body fat. In January he did the yearly Eval for early intervention and measured him again and his body fat again is at 20%. That is awesome! I am so, so happy about this. Even though we aren’t seeing a lot of weight gain, he is doing better!
The test for CF (cystic fybrosis) was done last month and he does not have that. I haven’t talked to the Gastroenterologist yet (apt next week) but my Peds office called and said the Fecal Fat Quantification test came back fine. (This test the doctor ordered to make sure he is absorbing nutrients from what he eats and that it is not just passing through him). We’ve done most of the tests that the drs suggested and no obvious reasons have been found yet for his lack of growth and weight gain. (We’ve done a bone age scan, celiac test, allergy test, HGH test in which he was slightly low in the Human Growth hormone test and lots of bloodwork done) (Which reminds me, I need to ask my doctor about his Growth hormone stim test and see if they are planning to re-check that as he was under the accepted level for that).
We will see the endocrinologist in March and I’m guessing she may want more bloodwork to see where his phosphorus levels are at (the leverls were high at last blood test) as well as his Vitamin D (it was low) and prealbum levels (those were low too) When we saw the Dr. back in October, she basically told us he was malnourished based on his bloodwork.
We’ve been working hard to get him to eat more protein and are supplementing his juice with liquid protein and adding more Vitamin D and Calcium Mag supplements, which does seem to be helping. But, he is getting real picky again and having texture issues and spitting out food that aren’t smooth. Our nutritionist is thinking he be having some reflux issues again as we’ve been off his reflux medicine since September and maybe we should put him back on Prevacid, so I’ll be talking to the gastroenterologist about that.
Since I wrote the above post, Trevor has been steadily eating better. He hasn't been sick since this post back mid february. He is eating much better now, guzzling his chocolate soy milk (with oil) and is not spitting out the foods as much as he had been. Our gastroenterologist dr. upped his dose on the cyproheptatine ( appetite stimulatant)to take it 2 times a day. We continue to give himt he polyvisol and CAl MAg supplements every day. I am so happy to say his hair is growing, so that along with his height is a good thing. The last weight check he was 23 lbs 4 oz and i was excited to see him over 23 lbs. He had gained 10 oz in 3 weeks. Our nutrionist says 8 oz for a month is what would be expected, so he is doing good right now. I just hope I can keep him healty for a bit! We will see the endocrinologist this coming week so stay tuned!