Guest guest Posted May 12, 2005 Report Share Posted May 12, 2005 Hi Guys This came as no surprise to us, but Liam had his 3 month endo check up yesterday and he has lost 0.5kg, he did grow 1.7cm though. This was my greatest fear with Liam going onto growth hormone. In short We started GHT 6 months ago, in the first 3 months he grew 4cm and put on 0.7kg. Unfortunately we are still struggling to feed him. He is 100% g tube fed, and is still only getting the same amount of calories as he was a year ago(over 8cm ago). He has boluses or continuous feeds all day to the max he will cope with approx 100ml every 2 hrs, and is fed overnight. Im convinced that Liams growth has dropped off because he doesnt get enough calories. The endo wants to up his GHT, but if we do how is he going to grow, with not enough cals. I have an appt with the gastro specialist next Monday, the same one that doesnt believe Liams reflux is significant. Our Drs just dont work as a team and it really is the kids that suffer because of it( and the parents) The endo says the gastro specialist will sort the calorie problem out, but , how??? he hasnt so far. Sorry, this is just a vent really. Jody(mum to Liam 3yrs 11 mnths 87cm 11kg and Cameron) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2005 Report Share Posted May 15, 2005 Oh Cara, that is horrible. Make sure you get assertive with him. I'm sure there must be something in Magic's library that you can get him to look and hopefully he will then listen. B 5 and Kelli 2 3/4 cara schobert wrote: jody, the doc are the same here for me they don't work together and they really don't listen to me all that well my endo does good but my gi won't even up jacob peractin he said he is fine just looks like a normal growth volisaty in weight he won't listen to the fact it has to be high because of his ght he even wanted to take him off of it i though well i guess some is better then none............he won't even see him for a whole year little does he know i will call him after we go to chicago and get questioned by dr.h i am sure it will be a year of the same dose for him. i hope you can fiuger it out cara Jody & Damian wrote: Hi Guys This came as no surprise to us, but Liam had his 3 month endo check up yesterday and he has lost 0.5kg, he did grow 1.7cm though. This was my greatest fear with Liam going onto growth hormone. In short We started GHT 6 months ago, in the first 3 months he grew 4cm and put on 0.7kg. Unfortunately we are still struggling to feed him. He is 100% g tube fed, and is still only getting the same amount of calories as he was a year ago(over 8cm ago). He has boluses or continuous feeds all day to the max he will cope with approx 100ml every 2 hrs, and is fed overnight. Im convinced that Liams growth has dropped off because he doesnt get enough calories. The endo wants to up his GHT, but if we do how is he going to grow, with not enough cals. I have an appt with the gastro specialist next Monday, the same one that doesnt believe Liams reflux is significant. Our Drs just dont work as a team and it really is the kids that suffer because of it( and the parents) The endo says the gastro specialist will sort the calorie problem out, but , how??? he hasnt so far. Sorry, this is just a vent really. Jody(mum to Liam 3yrs 11 mnths 87cm 11kg and Cameron) --------------------------------- Quote Link to comment Share on other sites More sharing options...
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