re: re: Florinef
Aug. 5th, 2002   9:11pm

My kids with salt wasting CAH - need salt and florinef.  And as babies MORE florinef.  Or they would be in adrenal crisis mode. I could have given them a whole mountain (or pot - as anne-marie called it) and they still would have had an adrenal crisis without the mediations.  As the babies grew (and not because they were eating more salt) their bodies were more mature and less florinef was needed.  So I disagree with Anne-Marie that you do not without florinef and see how much salt they are retaining.  The only judge would be a plasma renin blood test and blood pressure.  If the plasma renin is high and blood pressure is low then the dose of florinef needs to be increased. These children are deficiency in the hormone - aldosterone (retains salt).  No amount of salt will replace this deficiency.  AGAIN florinef is a replace for the aldosterone deficiency (not salt). Cortef or hydrocortisol is replacing the deficiency or cortisol the hormone needed for mintenance of blood sugar, blood pressure and general energy levels.  Without these replacement - especially the cortisol - the blood pressure and chemistry (sugar and salts) are too low... then coma, and then death. (brain swelling and brain damage before death - heart stops). Both cortisol (cortef or hydrocortisone) and florinef levels affect the blood pressure.  During an adrenal crisis - give EXTRA cortef (three to 10 times more) but no need for extra florinef. The cortef (extra) will raise the blood pressure. If you are over dosing on cortef to keep the blood pressure up - you will stunt the growth of the child.

With florinef - the salt wasting CAH child needs 2-6 mmol per kg boyd weight (0.12 to 0.33 gm/kg) of sodium per day.

Perhap you can contact John Hopkins Hospital in the US and ask for help. They see children from all over the world.  That is my suggestion.

 

roberta
Rare Disease Search Engine, Homeschool Sites, Online Homeschool, Online Income, Ethical Adsense, Creative writing, Family Web Hosting, Christian Radio, Tulsa Parks