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Cystic Fibrosis Message Board


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My son who is 3 has been unwell off and on since birth. He went unconcsious for 24 hours at a week old. Still don't know why. Couldn't breath properly at all as a baby. Always had a wet sounding chest. Needing to sit at all times with a humidifier. Doctor thought his chest was to small for body. Frequent diarhea and green or pale fatty poops. Awful smell and consistency. At 1 year old had an awful spell of wheezing and not being able to breath so we went to hospital where he got diagnosed with asthma. Given puffers and prednisone. Still very poorly with bronchitis and pneumonia. Given another lot of steroids. Chest improved but he came down with an ear infection for about 8 months. Sceduled tubes but he kept having seizures and lips and fingers turning blue. He has had 5 febral seizures and 2 non febral seizures. Doctor wouldn't do surgery. Ears have now cleared up. Chest has been fine since last February when he had pneumonia. But, his constant diarhea I am getting tired of. He was taken off wheat products around 18 months ago. Improved the diarhea for a short time but it's been back off and on for around 6 months now even though he is off wheat. The allergist has now taken him off sugar, juice, fruit of any kind, milk products and wheat still for 2 weeks. That is so hard and he is always hungry.
They have tested his heart which he has a slight murmer, done a EEG on his head for epilepsy and it turned out normal for his age. Done a tonne of blood work. We are now waiting for an apponitment for a sweat test and still waiting for the results of the blood work form last week. They are testing him for the second time for Celiac. He has had malabsortion numerous times. Done lots of allergy testing which turned out fine. His blood did show he had an intolerance to wheat last year.
(He can wake in the middle of the night just screaming with stomach pain, then he starts with the diarhea and I can hear him from my bedroom it is so explosive. This could last for 3 hours and he will wake in the morning feeling alot better as if nothing was wrong. Then he might start with the diarhea 24 hurs later again.) Sometimes his poops are normal.
Any ideas with what this could be. THere has to be a reason for all of this. It is very frustrating. He is 3 years old and weighs around 30 pounds. So, he isn't a bad size.
Any help or suggestions would be great. I'm so sick of going to the doctors with him.





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