Aa
Newly DX'd 15 yr old
Hi, my daughter was just diagnosed less than a week ago with DA. I am heavily in the research phase and would love all the input I can get. I am wondering whether to skip our local cardiologist and go straight to finding a specialist, which I am not have much success with yet. She has been symptomatic for a long time on and off again. Recently, in the last 1.5 mos her symptoms have worsened. She was have "spells" of dizziness, feeling faint, extreme weakness and tired. Over the past week she has gotten worse and has not been able to go to school for 2 weeks now., She gets really faint, very weak and exhausted with ambulation. She has difficulty getting out of the bed. So my questions are: Since we have seen a progression does this mean it is getting worse and worse? Anyone know any specialist in SC or NC or close by to those states? She was stared on Florinef. How long before we see improvements? Her doctor said 1 or 2 weeks? feeling sad and overwhelmed by this diagnosis. This is my 15 yr who was a competitive gymnast and looking forward to team sports in HS. I am sorry for all who are having to deal with this. Thank you in advance for your input.
Hi. I'm sorry you have occasion to be here, but I hope I can answer some of your questions.
None of the major autonomic testing clinics is in the NC/SC area. If I were you, I would start with the local cardiologist first (so long as s/he is at a major university teaching hospital). If that doesn't get you anywhere, then you can consider traveling across the country to a specialist center.
Considering your daughter's age, most likely she has the developmental form of POTS/dysautonomia. This is good news, because it means that there's a very high likelihood that she will eventually "outgrow" this completely.
As to whether you're seeing progression of the illness, it's impossible to say on the time scale of weeks or even months; "flare ups" of dysautonomia can last several months or more at a time, so one can really only assess progression on the scale of years. Moreover, considering she likely has the developmental form of it, it wouldn't be expected to be progressive in the medical sense of that term.
If you're not seeing improvement from the florinef after a couple of weeks, get back in touch with the prescribing physician. It's possible that the dose needs to be changed or another medication needs to be prescribed (either in addition to, or instead of, the fludrocortisone). Because each patient varies so much in terms of response to treatment, it's basically trial and error trying to find the right medications for a given patient. This process can be lengthy, and frustrating at times, but we really don't have better answers at this point in time.
The developmental form is often seen in very physically active, high-achieving children, so I'm not surprised to hear that your daughter is a gymnast. I'm so sorry to hear she is dealing with this, and I can imagine how emotionally troubling this is for you and for her.
Have you contacted DYNA at all for support? That's another really good resource.
Best,
H.
None of the major autonomic testing clinics is in the NC/SC area. If I were you, I would start with the local cardiologist first (so long as s/he is at a major university teaching hospital). If that doesn't get you anywhere, then you can consider traveling across the country to a specialist center.
Considering your daughter's age, most likely she has the developmental form of POTS/dysautonomia. This is good news, because it means that there's a very high likelihood that she will eventually "outgrow" this completely.
As to whether you're seeing progression of the illness, it's impossible to say on the time scale of weeks or even months; "flare ups" of dysautonomia can last several months or more at a time, so one can really only assess progression on the scale of years. Moreover, considering she likely has the developmental form of it, it wouldn't be expected to be progressive in the medical sense of that term.
If you're not seeing improvement from the florinef after a couple of weeks, get back in touch with the prescribing physician. It's possible that the dose needs to be changed or another medication needs to be prescribed (either in addition to, or instead of, the fludrocortisone). Because each patient varies so much in terms of response to treatment, it's basically trial and error trying to find the right medications for a given patient. This process can be lengthy, and frustrating at times, but we really don't have better answers at this point in time.
The developmental form is often seen in very physically active, high-achieving children, so I'm not surprised to hear that your daughter is a gymnast. I'm so sorry to hear she is dealing with this, and I can imagine how emotionally troubling this is for you and for her.
Have you contacted DYNA at all for support? That's another really good resource.
Best,
H.
Hello,
As part of your research have a look at this UK site for Florinef,
http://www.patient.co.uk/medicine/fludrocortisone-tablets-florinef
Hope this helps.
As part of your research have a look at this UK site for Florinef,
http://www.patient.co.uk/medicine/fludrocortisone-tablets-florinef
Hope this helps.
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