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mkees73
Posts:13
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Posted:06/02/2008 3:17 AM |
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Hi all,
I was wondering if anyone has added nutritional supplements/alternative medicine to their child's active treatment protocol or after the completion of treatment. I have heard quite a bit about Jeanne Wallace from another pediatric brain tumor listserve, and have been considering this route for Andrew as a complement to his current treatment (IRS-III, currently Week 20 of 51). Andrew is 26 months old and has ATRT.
I'd be very interested in hearing others' experience.
Michelle
mkees@umich.edu
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mckaylasmommy
Posts:18
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Posted:06/03/2008 11:27 AM |
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While our daughter went through treatment we had a hard time finding a local CAM/alternative medicine/naturopath person who would even meet with us because Rhabdoid is so rare. Nobody wanted anything to do with us. We did meet with an integrative medicine dr who referred us to the book Disease-proof your child feeding kids right by Joel Fuhrman. He also recommended getting a vitamin d blood test and to supplement with quality vitamins, especially vitamin c and d. Our daughter had a G tube and still does almost 5 months post treatment for rhabdoid of the kidney/lungs/bone. He recommended utilizing that with real food- healthy foods blended up like fruit, vegetables, whole grains, etc. We've been doing that ever since and not using the nutren jr, peptamin jr, pediasure type drinks anymore. Another book we were told is a must by someone who wouldn't meet with us because of the rarity, but we did get the book- Beating cancer with nutrition by Patrick Quillin. The book is awesome.
Alot of these resources we didn't get until late in treatment, but our daughter was on a potent multivitamin before cancer, during cancer, and still today and ever since she's had a feeding tube we've given her extra vitamin c and a concentrated fruits and vegetables pill crushed up in water every day. We've been blending up food for her for months and adding all the supplements and she's beeing doing great. I'm not sure if she'd still be here today if we hadn't added supplements, but I wouldn't want to do it over any way. If anything I'd do more than we did the 1st time around and avoid sugar like candy and soda pop that we let her have during treatment because it's the only thing she ate for months. Cancer likes sugar so we were only feeding the monster but the dieticians at the hospital just wanted her to get any calories they could- good or bad.
Our daughter doesn't NEED her feeding tube anymore to survive, but we'd rather keep filling her up with foods that will benefit her rather than let her eat like a normal toddler. Don't get me wrong, she does eat all day long, but it's foods like crackers, cheese, eggs, pizza, and pastas. We don't let her eat junk, but it's still not foods that help your body fight cancer.
My e-mail is klquam@hotmail.com and our site is www.caringbridge.org/visit/mckaylakeelan
I hope this info helps you in some way.
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