child with heart disease and POTS

[scotti562]

Hi, its been a while since i was on here but are now looking for more information. Just to update; I have a 12year old son, he has pacemaker inserted for 3rd degree heart block, he also has AVNRT and has had a successful ablation last xmas. So no more heart meds. Thank goodness as they were really bad on him. He has been diagnosed with POTS for the last 8 months. He has tried the increase of salt and water, raised his bed and attempts to get more excerise. But still has daily problems. His heart surgeon has suggested Fludrocortisone. Before this happens, im trying to get more information on it from anybody that has been on it themselves or ideally their child. I would really appreiciate any help. Thank you. We live in New Zealand.

[Heiferly]

Hi. I took fludrocortisone for about 5 years with no ill effects that I'm aware of. I did have problems with side effects (rapid blood pressure drops when standing, chiefly, if I recall correctly) if my dose was raised too high, but we would just lower it again and I would be fine. One of the things that seems scary about fludrocortisone is that it is a steroid, but fortunately it is a mineralcorticoid so it doesn't have nearly the harsh effects of other better-known steroids like Prednisone.

Best,
Heiferly.

[scotti562]

Hi Christy, thanks for your reply. I was talking to you back in March this year and thanks to your help my son is now enrolled in schooling at home when he is too unwell to go. I think it is Homebound for you and in New Zealand he is under Northern Health School. So thank you very much for pointing me in the right direction, it has made a huge difference as i no longer worry about his education.
Sandra.

[CHRISTYDRAKE]

My son took fludrocortisone for 2.5 years starting at the age of 14.  It helped him by getting rid of his dizziness.  He did put some weight on with it but no bad side effects.

Christy