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Thread: 1st 3 months on Growth Hormone results

  1. #21
    NancyR's Avatar
    NancyR is offline INCIIDer - A Community Creator
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    Jan 2006

    Default This is just incredible! thank you so much for sharing

    all this info... I'm going to share this with another family - carefully. Maybe it can help their daughter too!

    The importance of feeling hungry is undeniable. I remember watching my dad recover from a heart attack, he needed to eat - he'd lost so much weight. He had no appetite at all, and he struggled to force himself to eat. It was heartbreaking to watch. But, I really learned the importance of hunger!

    Thank you again for sharing this info! And, I am so, so happy for your family! and, I can only imagine the level of stress taken off your shoulders! : )

    Many hugs to you and yours!!! Nancy

  2. #22
    KaylieS Guest


    That is absolutely awesome!!!!! I'm so happy to hear that!!!

    And...did you say before that you finally got insurance to cover it?

    Is he still on cyproheptidine? (I'm thinking he was on it before).

    The timing is pretty funny b/c we just had ds's 4 yr old appt last week. I was really worried about his growth. he is short, skinny, and has very little appetite. Obviously more than Colin did b/c we don't have to do a g-tube. But he doesn't feel hunger like we do, so I do a lot of saying things like "ok, now it's time to eat lunch" and he says "but I already ate today I had cheese". "yes, but that was breakfast. now it's time to eat again". @@

    Anyway... he at 4 is now about 30.5 lbs and is around the 3-5th % for weight, which is what he was a year ago. And heigh is around the 5-7th %. He had fallen way off the weight growth curve and head curve when he was a toddler and so he took enzymes for a year and that's how we made it back on the curve. He had a pancreatic enzyme deficiency.

    i still worry about his growth but since I am only 5'1" they figure he'll just be little... the height is actually less of a worry for me than the weight b/c it's so hard to get calories in him. We do "pink bear milk" some nights which is milk w/baby formula (2 scoops) and 1 scoop of nestle strawberry quick to try to get more calories in him. Unfort b/c of the whole cavity thing I am weaning him off of that.

    Hey, here's a suggestion for you... I found at walmart in the string cheese section they have now these "rectangles" of cheddar cheese that are 1 serving each. I think they have like 9 grams of fat in each one. Might be only 6...but's a good chunk of calories and fat in a little piece of cheese. Ds really likes them, in fact likes them a lot more than string cheese. YOu might see if Colin likes those - or if they fit in w/the eating plan you have him on.

    I guess part of me wishes we could do something like what you are doing to get ds's appetite up and his growth up. But since I'm so short I doubt they would consider him for it...His ped gi dr basically discharged him once he was found via endoscopy not to need the enzymes anymore and was finally at the 3rd % for weight.


  3. #23
    emilyb00 is offline INCIIDer - A Community Creator
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    Jan 2006

    Default Kaylie

    Thanks for your note and cheese suggestion. Colin does like those Baby Bell cheeses but I haven't seen the triangles.

    It may be worth a visit to the Ped Endo for an evaulation. It wouldn't hurt? And make sure you keep up with the periactin dose. Colin's doctor recently increased it to 9.2ccs/twice a day and it made a big difference in the amount he was eating.

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