Ademas

[Gibson75]

Oedemas

Has anyone else experienced problems with oedema's. My toddler has been getting aches in his feet for the past two weeks which have been the same time in the evening. A couple of nights ago I had him at the hospital as his feet swelled and he would not stand at all, The aching is now occuring during the day when he runs around as well. His sleep pattern is increasing and he sleeps 4-5 hours during the day and all night. I am hoping this will be the final straw and they will trial him on enzymes. They haven't as yet as he has great weight for age. The genetisist advised he should trial them as he has had chronic diareah since he was four months old and often gets constipated. Has anyone else experienced oedemas, I have heard it can be from protein defficiency?

 

[jshet]

My son received a late diagnoisis of cf because of testing being down wrong. He is now 16 ans suffered with all of the symptoms of cf his entire life. At a young age he would complain about his feet and ankles hurting with some slight swelling. It was always pushed off and thought it was just another one of his weird symptoms. Later he started swelling in his joints that was very large ad painful. We were sent to rheumatology and they began treating him for arthritis. At the same time we were working with gi because after 7 years of having extreme difficulty with gaining weight she brought up trying enzymes. I again explained how he had had 2 positive sweat tests and 9 borderline. She decided to repeat the sweat test and start the enzymes. The sweat test was positive and he received a diagnoisis. The enzymes were the best thing that has happened to him! His joints have not swelled once since starting them and he has been pain free! I know the enzymes cured his arthritis. He had had ongoing issues with his joints for over a year prior to starting them and Like your child was sleeping in the afternoon almost daily. I truly feel that my son had been not absorbing nutrients for so long that this was his bodies way of responding. The enzymes will not hurt him if he doesn't need them. Ther is no reason not to try them. I would speak with his doctor and ask to try them. I hope you will have the same results that we did.. My son is pancreatic insufficient also. Good luck

 

[Gibson75]

jshet,Thanks for your reply. I know how you feel, sometimes you just want to scream it out to the doctors because the answers are just staring them in the face. With them it all comes back to the sweat test. They are at least now taking him seriously and I have a good shot at trialling him on enzymes. Just want him to feel what its like to be as healthy as he can be. I have read a lot about false negative sweat tests and fluid retention? Makes me wonder? So sorry to hear your son had to wait so many years before he got the treatment he has, I do hope he is doing a lot better now.