Hello,

I am new to this site but impressed with the depth of information.

My son edward is just 6 weeks old and has the Salt wasting form of CAH.He is my 5th child and first with CAH. we live in NZ.

We are breastfeeding and he is now 6 weeks old. We all find the salt terrible.

Mixing with Breastmilk didnt seem to help him much and I wanted to try and keep the Breastmilk the reward for taking it and a pleasureable experience.

In the early days we rinsed his mouth quickly after doses with expressed milk and allowed it to spill out as he seemed to suffer so much with the burning, we tried finger feeding it with a tube but he was too wise and wouldnt suck , also a tiny tube taped to my nipple and syringed in with a feed.

I think , taking time to give it slowly , picking the right time when they are relaxed or even half aseep , singing , talking , staying calm(very hard at the start!) and sharing the job with close family helps.

But I wish their was an easier way.

I will try mixing it again with milk, he likes his Fludrocortisone mixed with breastmilk and even laps up the Cortisone now without to much fuss but I guess things will change as he grows wise!

My love to you , and heart as well as it is such a hard time for us all,

Belinda

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