pituitary.org.uk

Hello, is there anyone out there who has/is a a child/teenager with a prolactinoma?
My 11 year old son was diagnosed with a giant prolactinoma (4cm x 2.5 cm) on 16th December, following a series of eye tests. It was pressing on his optic nerve, so he had surgery (through the nose) and most of the tumour was removed on Wednesday 22nd December by an amazing surgeon at Great Ormond Street hospital. Because of the speed with which everyone reacted, his sight has returned, for which we are so, so grateful. He's now taking cabergoline weekly. He's back at school on short days at the moment, and just this weekend seems to have got some of his energy back. We have an appointment with the endo team tomorrow and it seems like his prolactin levels are coming down, but I have so many questions! It would be great to know if anyone else is going on this scary journey. From what I've read, it's unusual to find such a large prolactinoma in a child...

Hi I realise this was posted a long time ago and hope your son has improved much since you posted. I just wanted to share because I know pituitary adenomas are rare in children, but although I will soon be 30 I was diagnosed with my prolactinoma (micro though) at the age of 14.

I remember it being a terrifying time and terrible making it through my GCSE's when I just wanted to sleep so much of the time. If it hadnt been for the support of my family I don't know how I would have coped. I think its fantastic you are showing your support even by posting here.

There should be a lot of support available to your son, and please look into organisations such as Connexions though many start supporting age 13 up. They can provide intensive support in school as well as often looking at alternative education routes if required.

I really wish you both well for the future and hope you might post an update.
fairyfay

Hello,
I have just joined the foundation. My daughter was diagnosed with a micro prolactinoma last June. She hadn't had a period for almost a year and we were told it was just a stage girls go through. She was 17 at the time. Only through going back to the Dr as I wasn't happy did they agree to blood tests etc. getting the diagnosis was a relief but since then management has proved difficult. She was initially on 75 Quinagolide which was increased to 150 before Christmas as her blood doubled. The dose knocked her off her feet and she just cannot tolerate them. Now she is on Cabergoline and to be honest the side effects are awful. She is constantly dizzy, has no appetite, is nauseous, has headaches. We are seeing the consultant on Monday and I'm totally frustrated. She isn't living her life, has had to give up the thought of Uni this year as she feels so unwell. Her 18th birthday came and went with no celebration also, despite our best efforts to make things as normal as possible.
I have no idea where we go from here.....it's awful seeing your child in this state. Anyone have any thoughts/ideas?