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barkingboys · 06-03-2010, 10:15 PM

We're having the same issue with DS. He finally started to gain and is now back to about the weight he was in October (may be a bit lighter even).

But he was sick for a bit a few weeks ago. In our case we're waiting until his next weigh in to deal with it. But the dietician (likely the same one you'll have) suggested adding some Pediasure Plus to his Pediasure with Fibre to increase concentration or increase volume. We're not sure which option we would prefer. Both have pros and cons to them... I've also heard that several children (tube fed) go on polycose (as animal woman suggested) to gain. I can understand why you would want Lilia to have some reserves... Do keep us updated on what you decide to try. Good luck!

Maven's Mummy - have you tried high calorie foods like the Danone (I think it is Danimals now), avocado, etc? You could also ask about giving Maven some pediasure, I know of some healthy kids that enjoy it and helps guarantee they get the vitamins, etc they need. Just a thought...

JeWill · 06-03-2010, 10:16 PM

Quote:

Originally Posted by ButterflyEffect

dd has been on polycose for over 3 years I would guess. It was the only thing we could do as she was at her max volume but ftt. It is what still keeps her on the cusp. We just increased to 230 mls of formula and she gets 5 tsp of poly in each feed. I am amazed they never suggested it to you guys!

never heard of that either!

ButterflyEffect · 06-03-2010, 10:19 PM

Quote:

Originally Posted by JeWill

never heard of that either!

what???!!! really? I think he wouldn't even taste it, it would be great for him!

Indigo74 · 06-03-2010, 10:33 PM

aww.....must be hard not to worry, ivveyy

hopefully you'll find something that helps. my niece had 4 or 5 heart surgeries in her first couple of years and she's 8 now and has only started to put on more weight in the last couple of years, id' say. even though she wasn't tube fed by lilia's age, so it's a bit different. but i remember SIL talking about leah being at the same weight for ages and ages.

she's still quite thin for her age....but i think they've also been told that she would likely burn more calories/have higher metabolism because the nature of her condition is such that her body still works harder even though the surgeries were really successful.

Becky Newell · 06-04-2010, 06:35 AM

Emma is pretty tiny as well, and has never gained weight easily, even with tube feeding and eating well, but thats because of the type of defect she had. Currently shes sitting at 27 lbs, 6 oz

Ivveyy · 06-04-2010, 01:56 PM

Quote:

Originally Posted by ButterflyEffect

dd has been on polycose for over 3 years I would guess. It was the only thing we could do as she was at her max volume but ftt. It is what still keeps her on the cusp. We just increased to 230 mls of formula and she gets 5 tsp of poly in each feed. I am amazed they never suggested it to you guys!

we have had a hard time finding a dietican to be followed here in london. So that could be why. i dont want to increase her feeds too much, cuz id ont think she'll toelrate much more. I'll ask about this at her transplant clinic on the 17th, we'll see a dietcian then.

Tanya-Mae · 06-04-2010, 02:02 PM

Yeah, I would assume your biggest hurdel would be finding the person with the specific knowledge base you are requiring. My hunch, sick kids... they deal with pediatric caridac profiles all the time... there must be some ultra specialized products through those channels.

barkingboys · 06-07-2010, 04:43 PM

Ivveyy - have you ever gone to the Enteral Feeding clinic at Children's? I can get you the contact number if you don't have one. I know you used to have trouble when Lilia had the JG...but it might be different now since she has a straight Mic-Key now. They have a dietician...you could request to have her follow you perhaps?!

Ivveyy · 06-07-2010, 04:59 PM

Quote:

Originally Posted by barkingboys

Ivveyy - have you ever gone to the Enteral Feeding clinic at Children's? I can get you the contact number if you don't have one. I know you used to have trouble when Lilia had the JG...but it might be different now since she has a straight Mic-Key now. They have a dietician...you could request to have her follow you perhaps?!

we;ve been once. Sarah mckay is the one who taught us to do the mic-key changes..also the one who suggested the dilation. I really like her. but we havnt seen the dietcian there yet.

barkingboys · 06-07-2010, 05:17 PM

Do you still have Sarah's contact information? If not, I can get it to you. Perhaps fire off an email, or give her a call to ask her about working with Andrea Carpenter or if she could have Andrea contact you to discuss your options. If need be, you might want to book into another clinic just so they keep you associated with it and then get all three (Sarah, dietician & SLP) to talk to you.