re: re: re: Doctor says in CAH loss of height is unacceptable and preventable.
Oct. 26th, 2002   9:56pm

24 hour profile involves being admitted to hospital for a day and a night and having a needle put into the back of the hand and left there.  They then take bloods off every four hours and measure the levels and this gives them a prolfile of what the 17 OHP or cortisol levels are doing over the full 24 hour period.  You see what is happening between doses as well as just before the dose with that type of monitoring.  This can be done at home with 17 OHP filter paper testing.  You have to prick a finger and blot the drop of blood onto a filter paper.  That is done right before the child is due a dose.  You need to look at what is happening right up to the next dose.  This is because each dose needs to carry a child until the next one, so measuring the 17 OHP right before giving the dose is going to give you a better result.  For arguments sake in the example above you would take those at 6am,2pm, 10pm and then give the dose right away after the tests.  

If a child is distressed with a needle in the back of the hand, these tests can be done by taking urine over a 4 hour period.  Everything the child passes urine wise could theoretically be put into separate containers and then "each" container labelled at the time it was taken.  I guess that could give them a good idea what steroids are passed out in the urine whether they have covered the child, though it would be more difficult trying to get a child to pee just before their dose is given or on demand.  However, doing things that way in my opinion is better than not bothering at all.

For small babies and children they could be admitted to hospital and have a urine bag attached and have them take samples of empty that regularly.  Otherwise a needle is probably best. 

I realise that children may have discomfort, but to be honest, in my opinion, it is important to get the doses as physiologically close to what they should be as possible and there is no other way unfortunately.  You can either chance not having your child have 24 hour profiles and rely solely on growth and height assessments and never check if the doses are ok or covering them, but to be honest---I would rather that my child had that discomfort for 24 hours and grow well, than have growth problems and side effects of drugs.  As it is when he doesnt get enough he is miserable and also when he gets too much he is cantankerous.  That is day in day out.  So what is best is down to indivdual choice.  One thing is for sure,  do not think that Doctors should totally omit this kind of testing in ALL children just because they feel that some children will not cope with the needle overnight or the blood spots.    Every child is different and should be treated so.  I just want my child to grow at as near a normal rate as possible and if that is the only way to do it then so be it. 

It’s no joke to have your child upset by blood tests, but eventually they do get used to them.  I can assure all.  They learn to focus elsewhere and they learn to live with them ebcause they are performed every so often anyway.

Anne-Marie
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