Saw a new cardiologist today and starting florinef

[octobermom0103]

This is our 4th one but she seems great.  We've decided to start our daughter on florinef as her weight has been decreasing since we started pushing fluids and she is now underweight.  I'm a little disheartened as she described her symptoms as severe, seems to be borderline bardycardia (her hr was 59 at the doctors) and she thinks she may have POTS as well.  At least she didn't sugar coat it and give me vague answers like the others did.  I'm going to wait until Sunday to start the florinef because she has one last big gymnastics meet on Saturday.

Lisa
Olivia - age 7

[Heiferly]

The main side effects I know of with fludrocortisone are flushing and unexpected "downsides" to having higher BP for some patients (e.g. having higher resting BP that doesn't translate to higher standing BP at a given dosage, such that the BP plummets rapidly when the patient stands, leading to more frequent syncope rather than less frequent syncope).  Again, these side effects are often, though not always, dosage dependent.

Even so, it can't hurt to double-check with the cardiologist, especially when dealing with pediatrics.

[LivingInHope]

Glad she did well at the meet.  There are a relatively small number of side effects for a drug listed for Florinef that are possible.  I have an old nursing 2008 drug handbook, and it lists the most common ones as:
sodium and water retention.  It does not list any urinary side effects or muskuloskeletal side effects, but does say under patient teaching to have the patient tell the prescibing dr. "if low blood pressure, weakness, cramping, or palpitations worsen..."   I'm guessing the cramping one because it lists as a rare side effect low blood potassium level.

Are you monitoring her blood pressure at home?  They list high blood pressure as a rare side effect.

[octobermom0103]

Thanks for the responses!

To answer your questions - yes we increased salt intake in addition to fluids.  We found out during medical testing that water is just not enough.  We are not doing a tilt table test as it does not change her treatment (I really don't want to put her through anymore testing than I have to).  As long as her symptoms are manageable, we're just going to keep going and cross that bridge when we get to it (hopefully we'll never get there!).

I logged on here to ask about the florinef side effects.  We took our first dose today and she just came to me (9 hours after taking it) complaining that her legs are really hurting (above the knees).  She also just wet her pants out of the blue while playing outside (hopefully she was just didn't want to stop long enough to go).  Can these be side effects or maybe growing pains (she's had growing pains in the knees before).  It's really tough dealing with a 7 year old and understanding just what's going on sometimes!

Oh and she did great at her meet yesterday.  It wasn't her best performance but she placed 5th in the state for bars, beam and floor and 7th for the all around and her team took first place!

[Heiferly]

Was salt/sodium-loading recommended in addition to the pushing of fluids, or have you just been increasing her water intake but not her electrolyte (esp. sodium) intake along with it?  (I mean, prior to this appointment, with regard to what may have led to the weight loss.)  Is the new cardiologist recommending salt- and fluid-loading along with the fludrocortisone?

I'm so happy to hear that you like the new cardiologist!!  I hope things go well with starting the new medication.  You may find that you need to play with the dosage on it a bit; it's a medication that varies widely in what dosage works in individual patients.  Too little and it won't help, too much and the side effects will be enough to make you want to call it quits.  I would encourage you to really give it a shot and keep in communication with the doc about what effects its having and whether you think the dosage needs tweaking at any point in time; it can have a substantial beneficial impact for many patients.  (That's not to say that it's right for ALL of us, just that it may be rough riding for a bit while you try to get the dose just right, but that it's worth the fuss of the trial and error because the benefit you may get can be substantial.)

Looking forward to hearing back from you again on how things are going,
Heiferly.

[LivingInHope]

Did the dr. have any suggestions on what to do re: your daughter's weight?  Did she order a tilt table test re: her suspicion of P.O.T.S.?  Let me know how the big meet goes?