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My name is Jenn and I inquired a while back on this board b/c I was worried about my son's lack of growth and weight gain and it has continued and he has been dx as FTT. He is 5 yrs old and currently weighs 29 lbs. He has weighed that since his 4yr checkup. His ped did testing to check his Thyroid function and it came back as normal so we were referred to and Endo who we saw in October. She took several vials of blood and also did an xray for a bone age scan. We don't have a follow up with her until Feb but all the testing she did seems to be fine. She also referred us to an GI doc. We saw her in November (along with a nutritionist) and the GI also took several vials of blood to test and ordered a Lactose breath hydrogen test which came back normal. We had a sweat test for CF yesterday (he does not have it) as well as another appt w/ the GI and nutrionist. Most of his initial bloodwork came back normal but he had one level that was a little low and so now the GI doc wants us to see an Immunologist. She also has scheduled him for an endoscopy in January. I have tried to get him to drink Pediasure (he used to) but he won't now, I can't get him to drink Carnation Instant Breakfast either. His appetite is ok but he definately eats less than my other little boy who will be 3 in January. The GI doc also said that we may need to go the tube feeding route if we can't get him to eat enough and that is really something we won't have to do. I will if we have to of course. Both the nutrionist and the GI are concerned about nutrients for the brain - especially since he already has damage to his brain. He has overcome so much already, it is disheartening to have yet another obstacle. The nutrionist also mentioned trying a drink with him called Resource - have any of you tried it? How about Scandishake? Anyone tried it? I need to do more research but if any of you have great ideas I would surely appreciate them!!
So, if I understood correctly, they haven't been able to find a reason for his low weight? I know how frustrating that can be since my daughter is similar. She just doesn't have an appetite and she is very picky about what she will eat. I have been seeing a feeding team in addition to her GI and nutritionist. They have been able to give me lots of interesting ideas on how to get her to eat. They are researchers in addition to practitioners, so they have studied up on this kind of thing quite a bit. I don't know if there is a similar program near where you are.
Anna used to refuse the Pediasure, but I reworked her schedule to offer it to her at a time where she would be most likely to have it. I noticed that she wakes up extremely thirsty in the mornings and used to down her milk before attempting breakfast. I decided to offer Pediasure as breakfast and moved breakfast to be more of a mid-morning snack. After a few days, she finally accepted Pediasure as a substitute for milk since she was thirsty enough. She now downs the entire can in less than 15 minutes. Try and see if you can change how you offer it to see if your son will be more likely to take it. Did you try the various flavors too?
As for the Carnation, I decided to split it up among all her cups of milk throughout the day, rather than giving her the one shake in the day. By the end of the day, she is now having a full serving of Carnation. I have mixed feelings about this. Now, she won't accept milk without it, which because a problem for me the other day when we ran out and she refused to drink anything! So now I worry that she is getting too many sweetened drinks and won't accept anything else. Oh well. The flip side is that she is at least getting that nutrition and calorie source. Depending on how badly you want it, you might consider trying something like that, and maybe the more diluted Carnation will be more easily accepted.
I haven't tried Scandishake, but I know Lisa, the host of the board has. (She's off having a baby right now! ) She swears by it!
Rosalie, Mommy to Anna (05/06) and Thomas (10/08)
Rosalie - Yes, you are right so far we can't find a reason for his low weight and limited growth. I am glad to hear that you have been pleased with the Feeding Clinic you have been taking Anna to. We had a very good experience with the one we used for Cade too back when we did it. His issues at that time were purely sensory based but I learned so much from the clinic and his wonderful OT who we still see for other issues. We will be seeing her again Thursday so I am going to ask her for more ideas since the issues we have now are very different from what we had then. Cade's endoscopy is going to be on January 15th. I wonder so much if it will tell us anything. My daughter (now 12) had one done for different reasons when she was 15 mos old and it gave us the answers we needed for her issues - maybe it will be the same for Cade.
I like your idea about splitting the Carnation up throughout the day. I have managed to get him to drink some of a milkshake with Carnation in it as well. How is Anna doing now? I think that mommy gut feelings are the best indicators of problems and successes!