Dear Shae,

I read your other post too.

Hang in there - you are doing a great job giving your child the medicines needed, and following up with your doctors for blood tests and other investigations.

It is VERY common with CAH to have to adjust the doses our children are on from time to time. Whereas other people’s bodies (that is, folks without CAH) finely tune the amount of steroids their bodies produce, people with CAH need to have it articifically replaced, and so the exact amounts needed will never be achieved. Sometimes they will be getting too much, and you need to cut back. Other times too little, and you need to give more. The only way to know whether to increase or decrease the regular dose is by doing exactly what you are doing - following up with the doctor for tests, and adjusting on the basis of the results.

Because we love our kids so much, we ALL wish we never had it wrong, and were only EVER giving EXACTLY the right dose - not too much, not too little. But this isn’t a reality, and we can only do our very best.

But you know, this IS good enough, and our kids do wonderfully well.

It sounds like it’s also hard for you changing doctors because of work, and this would be stressful... but again, you can really only ever do your best, and if you know in your heart you are doing your best by your child, there’s not much else you can do, and there comes a time when you need to give yourself a pat on the back for a job well done. If you DO think there are other things you can do, then go for it. And then pat yourself on the back!!

But rest assured, if you’re giving the meds prescribed by the doctor, getting regular check-ups, and making changes as necessary, then you are no where NEAR ruining your child’s life - you are helping your child achieve the very best quality of life for the future. Not giving the medications... well, it’s not even worth thinking about. It would be a very unfair thing to inflict on a child.

Take care - and believe in yourself, and don’t forget to pat yourself on the back occasionally...

Louise.