Guest guest Posted September 3, 2003 Report Share Posted September 3, 2003 Hello everyone, Our clinic visit went ok today. Colgan has been congested for all life now and so this is always a concern. He have not been able to figure out how to aleviate this yet. I hope soon though. Weight None. He is 14 lbs 8 oz And has been for over a month that or less. Even with continuous feeds at night and formula at 28 cal per ounce. He upped his enzymes again he is going to start taking Ultrase 12 during the day and one ultrase 12 and one ultrase 5 before bed durring continuous feeds. He is only 7 months old and seems like he is taking a lot of enzymes. I am worried about fibrosing colonopathy. Has anyone ever had this or know much about it. Iknow that it takes a while for the large amount of enzymes to induce this but at the rate we are going how knows I thought that I would just ask for info. I also thought that I would type out the formula for figuring enzymes and amount. I know that I have been wanting to know for some time now and I had to dig and dig to find formula. I am sure that a lot of you know this already but perhaps there are some new diagnosis out there that may like to know. This is not scientific just in my terms ok. Weight in kilograms(2.2 per pound) X max amout of Lipase units per kilo. ( Colgan is at a 1500 max ) this gives you amount lipase per meal multiply by weight in kilo ex. this is colgans numbers 6.5 x 1500 = 10050 10050 x 6.5 = 65000 units lipase per day I am sorry if confusing thought that I would just put in here in case someone was like me and wanted to know where kid needed to be. The reason I wanted to know is Colgan has had such a hard time regulating after many changes to diet so I needed to sit and figure it out. Ok on with visit sorry About the MicKey button. Not yet. They want to give it a month with NG tube to see what happens. So for now I will be e-mailing Colgans doc every day with eatting and pooping schedual and we will figure out what to do from this point. Kim also if you are reading this I thought that you would like to know that Dr. Maupin out CF doc did not know about the intracellular test for magnesium def. However has asked that I e-mail him the information and he will see what we can do about getting it done for Colgan. Soo I will keep trying to get weight on this little one and hope for the best talk with you all soon. Love to all of you Ashauna Quote Link to comment Share on other sites More sharing options...
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