Need medical info for 6 yr old with pancreas problem?

• By bagels
• Posted August 26, 2008 at 5:24 pm
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Kathy G I wrote to you a short while ago, and I looked up on line / some of which you may have done already. I see the Creon 20 he is taking may be the help for now until you get some ideas and som e nutritionalist input. But yes he needs some type of enzyme therapy. If the body continues to get this therapy it will become sort of dependent on it and the pancreatic enzymes will not begin to produce on their own. But too many factors are involved possibly. For one Is this A DNA thing or inherited, is it a defect that led to this due to some other disorder. Sometime Doctors don`t have the time or ability to research further than what they are trained to do. You should continue on without fear, gathering the info that may lead to some clues. First, let us pray together so it is in God`s hands,,, O.K> Lord you see this little guy suffering from what only you know is the problem. WE are anxious. sad and fearful at times. Sorry, though we are human we want what is best for all involved. WE surrender the boy to you and ask for your intervention in all the circumstances surrounding all involved in his life and health, both physically and spiritually. Bring us through the right channels that will lead him to health to the best extent possible. May we give you the glory and praise in what ever results you bring for us in this matter. Give us the grace to love him and be there for him through it all . Guide the doctors and give them wisdom and a honest heart. May they not mislead us or discourage us, but give us the go ahead to persue other avenues if it is best. WE ask this in Jesus name Amen.... KathyG I hope you can find the blessing in all that you are experiencing. My prayer is with you and your loved ones. I am signing off. Won`t be online for about 2 weeks. But god speed Bagels

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• By KathyG
• Posted August 26, 2008 at 11:22 pm
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Thank you Bagels, for the information. Kathyg

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• By Kate1
• Posted August 27, 2008 at 10:15 pm
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Hi, Kathy. I am so sorry to hear about what's going on with your grandson. It's hard to believe reading your post that he doesn't have CF. I'm assuming that they have done the full line of testing, from the sweat tests to the full DNA sequencing? I have CF and wasn't diagnosed until the age of 27, so these things can certainly slip through the cracks. I also have a form of CF that wouldn't get detected through initial blood screenings because my genotype is atypical. I guess I'm just saying that there's room for error. But, it sounds like the doctors are being thorough, so I don't want to be redundant.

I have taken Creon 10 for years and was never told that it could lead to your pancreas becoming "dependent" on it, but this is an interesting thing to consider.

I wish I had more to offer. I will be thinking of you and wishing the best for your grandson. If you have any more medical info. on him, I'd be interested to hear it. You never know when you might hear something that suddenly gives you a little insight.

Kate

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• By KathyG
• Posted August 28, 2008 at 4:29 pm
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Kate1,
Thank you so much for your reply. I'm sorry to hear that you have CF. My thoughts and prayers are with you. A sweat test was done and it was negative so the Dr. won't do any futher testing. I'm going to tell him about your case and hopefully something will be done. He talked about doing his DNA but he wants to wait and see how things are going. My grandson's Asthma is under control and of course he has seasonal allergies. He is growing in height and gaining weight. Normal for his age. Doctor's also said that "he does not look like a CF child" whatever that meant. So they are reluctant for futher testing. I'm looking for something concrete that I can throw at them when I go back because you just don't have a pancreas problem for no reason. As you can tell I'm angry and tired. You take care of yourself...KathyG

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