anna Posted September 12, 2006 Report Share Posted September 12, 2006 Hello all,We are very new to the medication side of things and would be most gratefull of your input with regards to the use of Fludrocortisone. Our sons neurologist has suggested that he tries this medication to help stop his disabling dizzy spells, but we are not sure about this med. as it seems to have some nasty side effects. At the moment we have him on a high salt diet (well he has always from young craved salty food) so we have upped it his intake a bit and we get him to drink rehydration drinks when he seems to be getting bout of dizzy spells and we give him cinnarizine 15mg that helps reduce the dizziness. The main thing is our sons neuro. is leaving the NHS and will not be around to do any follow up appointments and our GP would need to refer our son back to the hospital to see a paediatric neurologist which seems to be a problem; the old neuro. is an adults neuro. who saw our son as a special case as he was seeing me with another condition we both have. Due to funding issues their seems to be a very long waiting list to see such a person. Our GP does not think our son has problems and thinks we are being silly so we are not too sure if we can rely on him for support. So we are not sure whether to try this medicine out. Ta Anna Quote Link to comment Share on other sites More sharing options...
jenwclark Posted September 12, 2006 Report Share Posted September 12, 2006 I have taken Florinef with no ill effects. My understanding is that it requires periodic blood work, but not everybody has side effects.I'm sorry to hear about your GP. I hope you can find someone more supportive. When I was a teenager, a lot of doctors told my mother she was over-protective and just needed to let me grow up. Thank goodness she didn't listen.Spike Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 12, 2006 Report Share Posted September 12, 2006 i too hope you can find some more supportive & available doctors asap...i know this is often easier said that done.the med you are referring to is also known as florinef. i took it for years with no problems aside from needing potassium supplements (as it can speed up excretion of potassium from the body). the bloodwork mentioned by quiet spike is probably to check for potassium levels. people have different responses to florinef but it helps some immensely. obviously you have to weigh the possible pros and cons but any/all meds are going to have some potential side effects. all the best with your decision... melissa Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 12, 2006 Report Share Posted September 12, 2006 Hi Ta Anna-My 13 year old son takes florinef (another name for the same drug) and it's been a godsend. He does have to supplement with 8mg potassium. He was very lightheaded before he was on this drug. It has changed his life 100%. Always follow your doctors directions, but I want to give you some tips for starting with florinef in children. These tips come from Dr. Peter Rowe at Johns Hopkins. He suggests starting with a 1/4 of a .1mg tablet. Try that for a week and then add an additional 1/4 tablet until you work up to a therapeutic dosage. Florinef has the ability to cause a debiliating headache if you take too high of a dose. A therapeutic dose is one that improves symptoms and doesn't cause a headache. (.2mg is the maximum Dr. Rowe would give to a child.) My son has worked up to .1mg in the AM and .1mg in the PM. The tablets are hard, but not impossible to cut. Once again, check with your doctor before trying this, but it was very helpful for my child.I hope you find a more supportive GP. Best of luck.Julie Hello all,We are very new to the medication side of things and would be most gratefull of your input with regards to the use of Fludrocortisone. Our sons neurologist has suggested that he tries this medication to help stop his disabling dizzy spells, but we are not sure about this med. as it seems to have some nasty side effects. At the moment we have him on a high salt diet (well he has always from young craved salty food) so we have upped it his intake a bit and we get him to drink rehydration drinks when he seems to be getting bout of dizzy spells and we give him cinnarizine 15mg that helps reduce the dizziness. The main thing is our sons neuro. is leaving the NHS and will not be around to do any follow up appointments and our GP would need to refer our son back to the hospital to see a paediatric neurologist which seems to be a problem; the old neuro. is an adults neuro. who saw our son as a special case as he was seeing me with another condition we both have. Due to funding issues their seems to be a very long waiting list to see such a person. Our GP does not think our son has problems and thinks we are being silly so we are not too sure if we can rely on him for support. So we are not sure whether to try this medicine out. Ta Anna Quote Link to comment Share on other sites More sharing options...
anna Posted September 13, 2006 Author Report Share Posted September 13, 2006 HI,Thanks for the input folks, trying to find new dr. now.Anna Quote Link to comment Share on other sites More sharing options...
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