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Fludrocortisone Use In Eds Children


anna
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Hi all,

This Q. is for you guys that are EDSers as well.

My kids cardiologist has suggested we try Fludrocortisone and slow release salt tabs for their POTS symptoms. The DR. assured us that this stuff was totally safe and so on, but when I picked up the script I found, on the do not use if section, a bit about not to use if you have asprin sensetivity or if you have gut problems. Well the thing is both my kids are unable to take Ibruphen (sp) or such like, as it causes gut pain and bleeding problems (EDS related) and both kids had been diagnosed with infantile colits when younger. We have a long history of ulcers in myself and my EDS family members. I am not sure what to do about this med, I can not get hold of the cardiologist and he does not know anything about EDS anyway. So I wander if any of you EDSers use this med without problems.

Anna

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Hi Anna,

My son doesn't have EDS. He does however have lots of GI problems and he is able to tolerate florinef and salt tablets. My son's autonomic problems first presented with chronic nausea, vomiting, acid and bile reflux, and early satiety. He lost so much weight when he was 12 y/o that we ended up seeing a pediatric motility specialist at Johns Hopkins. Mack was found to have a neuropathy of his GI tract, secondary to his autonomic dysfunction. He's been treated with florinef and salt for 2 years now and has gotten great relief. He's had to take prilosec and/or nexium (for acid), erythromycin (as a prokinetic), and zofran (for nausea) during his treatment. As his autonomic problems have improved due to the florinef and salt, his GI symptoms have also improved and he's been able to back off of some of his GI meds.

I know EDS patients also suffer with acid reflux and they can have more severe GI motility symptoms like Mack's. Not only has Mack tolerated the florinef and salt; it has greatly helped to improve his GI symptoms.

Best of luck to your child. Please PM me if you have any questions.

Julie

Hi all,

This Q. is for you guys that are EDSers as well.

My kids cardiologist has suggested we try Fludrocortisone and slow release salt tabs for their POTS symptoms. The DR. assured us that this stuff was totally safe and so on, but when I picked up the script I found, on the do not use if section, a bit about not to use if you have asprin sensetivity or if you have gut problems. Well the thing is both my kids are unable to take Ibruphen (sp) or such like, as it causes gut pain and bleeding problems (EDS related) and both kids had been diagnosed with infantile colits when younger. We have a long history of ulcers in myself and my EDS family members. I am not sure what to do about this med, I can not get hold of the cardiologist and he does not know anything about EDS anyway. So I wander if any of you EDSers use this med without problems.

Anna

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Hi Julia,

Thanks for your post I will bare this in mind. The funny thing is that I started the kids on their slow release salt tabs and they seem to feel somewhat better already! so I think I will see how they do on this for a while.

Thanks again,

anna

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Hi Anna-

If salt alone is doing the trick, definately stop there. Salt and increased fluids helped my son, but he still needed more. He was experiencing pre-syncope several times a day. At his worst he took 6 Thermotabs a day and .2mg of florinef. Thankfully he's much better and only takes .05mg of florinef and 1 Thermotab a day now.

I hope your children keep feeling better and better.

Julie

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