Feeding and growth
Last Friday I took Angus to see the Endocrinologist. He was weighed and measured at this appointment at 82 cm tall and 11.14kg in weight. When he was 3, he weighed 11.7kg and was 81 cm tall. He's going to be 4 on Friday so only growing 1 cm and losing weight the past year is not good. I can understand wanting to keep him hungry to encourage his appetite and oral feeding, but there are other priorities like breathing which are not going to improve without growth. I am going to contact the Feeding Clinic tomorrow and tell them that we will be feeding him up for the next 6 months to give him time to catch up. It's not like he won't eat anything orally when he gets more tube feeds anyway. I don't want them to think I'm not motivated to get him eating, I am, I'm just more motivated to get him breathing independently. When he's this skinny he tends to get ill and have difficulty fighting the infection off as well. I'm going to feed him up until he weighs about 12 kg, and see how he does at that weight for a couple of months.
The Endocrinologist wants to start him on growth hormone for a year to see how he responds to that. It won't increase his terminal height, but it will increase his appetite and hopefully help him catch up in growth to where he should be for a child with his type of dwarfism. The prospect of giving daily injections doesn't worry me from a practical point of view, though obviously I'm concerned about how Angus will take it, and I don't want him thinking in later years that Gavin and I did it to try and make him taller, because we don't have a problem with his height - I just want him to grow to have a bigger chest! I'm not sure about all the ins and outs of it yet, but we are going to get more info from the Endocrinology nurse soon and take it from there. Some kids with EvC have lower than normal levels of growth hormone, so if Angus is one of them, it will be worth giving it to him to make sure he reaches his full potential.
No no word from either Columbus or Yorkhill yet. I will needle them tomorrow afternoon if nothing received.....
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evc
my name is tai, my son is kassidi, and we live in australia. i have followed angus's story for more than a year now, kassidi presents with all the same symptoms as angus but we hve yet to get a diagnosis.. kassidi is 18mnths now he was trached at 4mnths, and ventilated with pressures of 15/17. he is only 76cm tall and weighs in at 12kg. he also has 6 fingers on one hand [thumb] we are still waiting to repair his heart [vsd, asd,pda, carctation] i am a little frustrated with not knowing what his prognosis is.. would really like to talk to you, kassidi is the only one in australia and we feel alittle alone.