ideas for cf diet for a 16 month old?

[Guest guest]

We have a 16 months old boy with brain injury. Recently we began the

casein free diet on him and need to clarify conflicting information

from various sources. Any idea on the following questions are greatly

appreciated.

Our boy has swallowing problem and has been on gastrostomy tube

(G-tube) feeding. He had been taking Alimentum for more than 9 months

until recently we switched to Vivonex. Initially we thought his

diarrhea problem came from yeast overgrowth. Probiotic and colostrum

from Kirkmanlabs did one time clear up diarrhea problem. Then he had

to be hospitalized and take antibiotic for 2-3 weeks, but 2-3 months

after that, probiotic, colostrum, and nystatin combined could not

clear up his daily diarrhea. I thought there must be something beyond

just yeast overgrowth. Blood work showed that he had antibody against

casein. One source told me that antibody was genetic and a more

severe problem than allergy, while another source told me that

antibody and allergy were the same thing. Does anyone know the

difference? Any source or information on that?

The formula we just switched to--Vivonex--contains whey broken down to

smallest units, namely amino acids. The dietitian from the special

feeding supplier told me it contained no casein because it was

completely broken down. However, the naturopath from Kirkmanlabs said

whey was casein. Should kids on cf diet avoid amino acids from whey

protein?

The pediatrician did not like my idea of home-made rice milk (although

I thought it was an ingeneous idea) because it is low in protein and

fatty acids, both of which a 16 month needs for proper brain function

and development. I thought about supplementing protein and fatty

acids if Vivonex does not improve his diarrhea problem and we have to

go for some home-made recipe. Does anyone know of a liquid

diet/formula (in order to go through the G-tube) that is rich in

protein and fatty acids?

Does anyone have Dorfman's e-mail address and phone number?

Does she do e-mail and phone consultations without seeing the patient?

Thank you in advance for any ideas.

Li-chu Chen-Keller