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| | | Junior Member
 
Group: Forum Members
Last Login: 10/26/2008 6:04:21 PM
Posts: 11, Visits: 25 |
| | My daughter has been diagnosed with both Gorham's and has lymphangiomas in her chest cavity. She has always been extremely thin and during her first hospitalization she lost 10 lbs and has not been able to put it all back on. I've heard others mention about being thin and I'm wondering if there is any correlation between weight and both of these disease processes. Are others who are dealing with this have issues keeping weight on and/or are very thin? |
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| | | Forum Newbie
Group: Forum Members
Last Login: 6/26/2008 9:31:26 PM
Posts: 7, Visits: 17 |
| | My daughter lost weight steadily for the past few months. Her lowest weight was 78 pounds. She's 5 feet tall. Some of that 78 lbs. was fluid, so we think she may have been as low as 74 lbs. She was not utilizing protein well and now seems to be losing it as well. She's been on TPN and lipids for 2 months now and has gained some 20 pounds. Of course a large portion of that weight is fluid---ascites in her abdomen and pulmonary and pericardial effusions. Her actual dry weight is estimated at about 90 pounds. |
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| | | Forum Newbie
Group: Forum Members
Last Login: 12/27/2008 7:13:22 PM
Posts: 9, Visits: 42 |
| Robin was thin also, she ate a lot of fat free junk food to keep the weight on. We used to buy boxes of the jelly fish, sour patch kids, licorice. At one point the doctor subscribed medicinal marijuana pills to increase her appetite. In true Robin form she looked at her doctor and told him she was going to sell them on the street. The girl had a sense of humor that shocked a lot of people.
Blessedmom |
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| | | Forum Member
Group: Administrators
Last Login: Today @ 8:38:59 AM
Posts: 26, Visits: 628 |
| | I was always thin, but it didn't become a problem until I started having bad pulmonary issues. The increased amount of energy it took for me to breathe was using up all of my calories and I never seemed to be able to gain no matter how much I ate. Then I found a great shake called Scandishake. Usually, I can't stand these sort of drinks -they tasted bad and would fill me up and then I wouldn't be able to eat my meals. This one really tastes really good and the consistency is like chocolate milk. It's got 600 calories in an 8 oz glass. I would drink one every night right before bed. http://www.axcan.com/scandishake_us.php It's not fat free - so if you're trying the fat free diet, it wouldn't be good. |
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