re: Giving salt to babies - CAH booklet
Aug. 22nd, 2002   5:47pm

When my son was first diagnosed with CAH at 2 weeks of age, one of the hardest things for me was giving him the salt-supplement.  So I am pleased that you are looking for ways to help parents with this.

My son was prescribed a saline solution that was only available at the children’s hospital pharmacy, so it was a bit of a pain just to get it.  I can’t remember how much I was supposed to give him, but it seemed like gallons.  I was nursing at the time and he didn’t take a bottle well.  I tried mixing it with formula, juice, and flavorings from the pharmacy but none of it worked.  To me mixing it with other liquids just made for more total liquid that I had to get him to take.

I got into a routine where every night before I went to bed I would prepare all of his medication for the next day.  The nurses in the hospital had given me tons of syringes, so I would fill syringes with his liquid cortef, vitamin drops (he was anemic from all the blood draws), saline solution, and florinef mixed with sugar water.  I put all of the syringes in an emesis tray.   During the day I would give him his medication at the regular times and try to give as much saline as he would take at feeding times.  This system helped me to remember to give him his medication because it was right there all the time.  And it was easy because it was already prepared.  I got pretty good at squirting the saline solution into his cheek but it was difficult--he really hated it.  But with my system it was easy to tell by the end of the day how much I had given him.  I did my best but by the end of most days I still had some saline left.  It was very frustrating!  I was relieved when my doctor discontinued it.

Anyway, I know this isn’t a brilliant solution--but it worked for me.  Hope it’s helpful!

Cindy
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