Monday, December 7, 2009

What is Prolactin? What does Hyperprolactinaemia do?

What is this ridiculous hormone and what does Hyperprolactinaemia do to my child?
I know what the medical definition is and I know how it works and what it affects in an adult. But what does it mean in a ROHHAD child. It drives me insane because I can't figure this one out and what it means later. No one has ever really monitored Prolactin in ROHHAD children so we have nothing to go on. Yes I know - ROHHAD children are checked but no one monitors it like they do sodium and everything.
Last year I highly requested our doctors to do a constant monitoring of this hormone - they agreed and we check it monthly. Below is a graph I made for our doctors of Haven's prolactin levels.

The first day is her level after being told her diagnosis of Cancer and ROHHAD. The 2nd date is her prolactin 2 months later after removing her tumor. Then in April we began chemotherapy of Rituxan, IVIG, and Cytoxan. In June we were at our lowest. But by August we were completely off Rituxan and Cytoxan and she started to climb again.

May 1, 2009 we checked her levels before going in to isolation with Hi Cy. She was at 74.4. Normal prolactin for a 5 year old child is 18. So my daughter is extremely high.

This past Saturday I got the letter from our Endocrine office of tests recently run on Haven.

  • Growth hormone - in May 2009 was at 53 and in November 2009 is at 64! Still extremely low but going up since Hi CY
  • Sodium levels remain normal and good
  • Prolactin at 82.6

She is still climbing in Prolactin. So WHAT DOES THAT MEAN? Our doctors don't have an answer and can't tell me what and how it affects her. I don't believe I know any other ROHHAD child with a prolactin level this high.

The only thing I can imagine or what keeps running through my head is what we are afraid of. We waited too long to start treatments for ROHHAD that certain areas are permanantly damaged and can not be reversed. May be if we started earlier we could've repaired this - her graphs seems that way.

So now that she keeps climbing and climbing what will happen next? What does it do?

All I can find is that she most likely will be infertile and it can cause what do I look for next??????? I hate this disease!


  1. I remember doctors mentioning Joshua's prolactin level was high way back when he was in the hospital. Can't remember which time or if they said it more than once. Nobody ever really explained it to us either. And as far as I know they have not monitored it closely - especially not like sodium and the growth hormones. I'm not too fond of this disorder either.

  2. you can have a pituitary adenoma, secreting prolactin, but think thats normally bigger numbers, mildly elevated, 40 + , is suggestive of the pituitary gland getting squashed, I think..I think it can also mean low output for the hormone that should shut it down, if you dont need it , as in not breastfeeding. Dopamine ?? my brains fogged, so dont quote me on that, its a question for a good endo.Perhaps ask for a full pituitary hormone panel , to check if anything else is squiffy ? Jo XX