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hi my son is 6 years old was diagnosed january 16 2008 with ald he is now very badly affected by this horrible disease he has lost alot of weight and is ng tube fed can anyone give me some ideas to get him to gain weight
thanks
I know several mothers who can give you support and advice. Please contact me. ginacinsc@aol.com
My prayers are with you! Sending thousands of angels your way to surround your family.
We found a feeding tube worked better than the ng tube with our son. We also started him on a new organic vitamins. Peter Gillham's Natural Vitality, Organic Life Vitamins. It is liquid. Ask you doc about it. It has worked well with Matthew. Once we started he looks and feel better. We started in February. We use Jevity 1.2 and it helps maintain his weight and isn't too harsh on his stomach. good Luck and prayers are with you and your son
Dear LilLynn 1105!
I would give babyfoods, baby poridge, baby cereal into feedingtube...Also I would make portions from dinner and mix to give through tube...
Specific diet to gain weight... all I can go back in experience for you to ask your doctor about is one time I was pregnant I wouldn't gain enough, the dietitian would tell me to buy milkpowder to mix into regular milk for maximum amount of calories...but you'd need to ask about that...if you feel unassure, contact dietitian or ask for one. There should be one with this kind of experience in your ALD-network...best of luck /Annika-ALD mom in Sweden
Try the carnation instant breakfast drink mixes. instead of skim milk I used 1% milk or vanilla ice cream. They have many different flavors. I gave these to my son, Steven, when he was going thru his BMT and would not want to eat. It helped with nutrition and he did not lose so much weight. Steven's transplant failed and we have issues now with his weight so we still give the shakes and he loves them.
Hope this helps
Laurie
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