<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0">I have 3 girls, 2 of whom have CF. My 7 year old with CF does great for her age etc... My 11 year old with CF has had nothing but problems from quite sometime now. She got diagnosed with allergic bronchopulmonary aspergillosis over a year ago. The docs began treating her with prednisone and sporonox which helped. But everytime she got off of it, she was sick again! This last year she has had problems with it 5 times, and the treatments didn't last long. She has been on prednisone so long this time, she got all of the same side effects she's had in the past, but this time, much worse! She has the muscle cramps, slightly swollen legs and feet, miserable mood changes, alot of weight gain and the round face. But this time, she's gotten so big in the belly, that her feeding tube is beginning to seep blood and we have to keep it cleaned. She also has this huge lump of fatty like tissue in her upper back which causes her aches and pain, they call this the buffalo hump. I found out that she had been prescribed twice the amount of prednisone that she should have been getting (120 mg daily). Our doc began tapering her off, but she's been on 10mg every other day for over a month and a half now, and the swelling hasn't even begun to slow or go away. They don't seem to show much concern for this, but I do! She is very self-conscious about the changes in her body because of this, she wants to shave her face for God sakes! Her chest and belly are so barreled out that I'm really worried!!!! They are supposed to be setting her up with an appointment with endocrinology but that was over a month ago, they don't seem to enthused to get this done. I'm really worried....she just don't look good, like something is "very" wrong! Has anyone ever been in this situation? Could anyone shed any light on this for me and my husband??? My email address is....shannonshaver@aol.com. Thank any of you in advance.~Deborah ShaverCrossett, Arkansas
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in trouble from using prednisone
- Thread starter anonymous
- Start date
My daughter had the same thing when she was about 7 years old. She was on prednisone for about 6 months, I think, and got very swollen. It took a little while for the symprtoms to go away after she was off prednisone, but I am pretty sure that stuff usually reverses. It is maddening when your medical team does not acknowledge that for an 11 year old girl, how she looks is important and contributes to the way she feels about herself and can influence her health. It is a battle to always balance a child's psychological needs with all the "have-to's" If it makes you feel any better, she never had to take prednisone again-- but even flonase has sometimes caused her side effects so she uses it almost never.Good luck.
I'm a 17 year old boy with CF. I've been on prednisone many times before. Firstly, just the fact that they had the child on 120mg's of Prednisone at that young of an age is reason enough to GET A NEW DOCTOR IMMEDIATELY. Swelling should be fine. Give her TONS of fluids, mainly water. Don't give her sugar waters such as Gatorade that often, just incase of the risk of diabetes. Definitely go to endocrinology and find out more about the swelling just to ease any worry you have. Also, while with the endocrine doctor try to find out if she has diabetes. Trust me. I have it and I've probably had it for years and the doctors didn't discover it til last spring. Finding it early will improve many things in your child's life. Finally, no matter what, always be as persistent as possible. There's no reason why they shouldn't do what you ask them to do when it concerns your child. Especially with CF.