One of the Doctors that Ashley had ALWAYS asked at each three monthly visit if there had been any vomiting episodes or nausea.  I was looking through his notes last night and he states there were none for his records. 

I would say he was more or less using the frequency with which such episodes happen as a gauge to whether Ashley was outgrowing a dose.  He always asked it on top of all the other questions like what dose is he taking now, or how has he been--any illness etc.  This was when Ash was about three years old.   He has had four Endo’s since birth so I basically know that some do not really pay particular attention to it and other’s use it to determine how things are progressing.

I guess it would be good to jot these thigs down in a diary when they occur because you can gauge from one three month period to the next if kids are having more of these episodes and mention it to the Doctor at the next visit.  I would always double dose him immediately and the nauseas feeling would seem to disappear with just one double dose.  Whereas when he is really ill--it tends to progress to vomiting if it involved a serious infection or temp.  He often feels like this at lunchtime and the teacher has called and said he was in sick bay feeling sick, and when I have got him home and doubled his meds-- he has recovered after just that one increased dose!  That is why I am wondering if it should be something we use as a means to do further testings when the morning bloods look ok?  After all, that may be ok but it doesn’t mean to say that the afternoon dose does it?  

Ash last 17 OHP result was 95nmol/L which is high (10-50nmol/L is normal) but the androstenedione was in normal range.  So it looks as if there IS a problem somewhere betwen the 3.15pm dose and the 7am dose.  However, as the blood filter testing is not up and running yet I feel we should get profiling.  The Doctor wrote to advise that I step the morning dose up to 7.50mg but I know that this will not solve the elevating 17 OHP it will just stomp on it at 7am.  I am kind of reluctant to just raise a dose to correct a problem when we can find out which dose is causing the problem and raise that so the problem does not occur!  I just want someone to check ALL his doses---but feel like I am going around in circles with folks tyring to get the best thing done half the time.

They cannot possibly be know if that dose is right without doing a blood test just before that afternoon dose to measure if the 17 OHP is not too high.  I’ll be glad when we get the blood spot testing here.  Apparently they where close to getting it set up but now it may be a little longer and things are not quite ready yet! Darn..

I can’t wait---bring on the kit!  I will be doing heel or finger pricks everytime he feels nauseous I tell you--conducting my own studies here---just wait..lol!

Regards

Anne-Marie