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re: UK CAH Support Group - New Website & Florinef Petition Apr. 13th, 2008 12:03pm
hello my name is paula i have a 13 year old daughter with saltwasting CAH i am having awful problems with this she is under manchester childrens hospital danielle my daughter has hsd poor control for some time now they did a blood test aporx 2 years ago now and this blood test was done every hour on the hour for a total of 24 hours this test confimed that her body was not absorbing the medication properly they then increased her medication from 3 times a day to 4 however we went to hospital appointment on friday and her levels were very high they were 250 in the morning and in one afternoon one they were 118 they then told me that they wanted to reduce her back to 3 times a day and increase one dose by 2.5mg of hydrocotisone but if they reduced from 4 to 3 times a day that would still be less than what she is having now i really do not know where to turn or what to do please can someone give me some help and support in the end they decided to leave her medication as is and review again in 3 months time i am sur that this is no good for danielle's health and am very concerned about what will happen to her body her weight is already rocketed and she has dark hair above the lip on her belly bottom and feet this is not very good for her confidence and self asteem she is a teenager and has already been bullied due to weight and they just dont seem to care i have had enough of them fobbing me of and giving us no help and support can someone please give me help and advice on what to do and where to go from here thanks my email address is pauladoesdal@msn.com please someone help us i am out of ideas on what to do and where to go next thanks
