Can i get a copy of my ds brain scan that he had last year?

[brandy7]

as its now been confirmed through another hospital and scan that he does have abnormalities of his pituarity gland.

my ongoing saga with the local hospital giving us the run around for nearly 3 years stated that the pituarity scan was normal and for that reason he wanted me to stop giving my son his drugs and reduce his fluid intake, which would have ultimately led to him being severly dehydrated.

i really want the scan picture so i can get it looked at to see if it does actually show the same damage , as me and my mother thought at the time that with the consultants "brush aside" attitude that he hadnt even seen the scan picture

brandy - glad GOSH came up with the goods but sorry that it's not good news. What happens now?

You can get copies of your ds's medical records. Just write to the medical records office at the hospital. That have to let you have them (supposedly) within 40 days under the Data Protection Act. They may make a small charge to cover photocopying. I think you will have to specifically ask for the scan pictures and I'm not sure you would be able to get them. Sometimes they are on video or CD rather than as a physical film. It depends on the type of scan. There should be a scan report though in his file.

Did GOSH get his notes - can you ask them to look at it for you?

hi saggermakers

well theyve confirmed that he definitely cannot concentrate his urine, hence the fluid goes straight in him and straight out again, so ive got to continue with the injections twice daily to help his body hold the fluid in and concentrate it for him. ive spent 2.9 years battling to hear the words "he doesnt have a habit of water drinking, he would have a true intense thirst" i could have cried when the doc said it

his pituarity is under developed at the front and partly missing at the back which explains why he has hormone probs, as it controls all the bodies hormone releases.

hes on hormone treatment for the next 2 weeks, muscular injections, to try and bring his testicles down. got to wait for all the other blood results for other hormones and genetics.

im just so pissed off with the way weve been treated over the last few years, ive known from his birth that he had an intense thirst and my poor boy has been put through so many dehydration tests.

i want the scan pic because the local consultant wanted to stop my sons drugs and reduce his fluid because he said the pituarity was normal! thank god i got referred