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 osteoporosis.....so what do I look for next??????? I hate this disease!