Multiple pituitary hormone deficiency

[coreysmummy]

Hi
This is a bit of a story of what my wonderful son has it is called Multiple pituitary hormone deficiency or mphd what it basically means that his pituitary gland does not send the right messages to the hormones that are needed (etc his thyroid and genitals do not grow without growth hormone) this also means that he has to be on medication for life he take 3 X cortisol (morning midday and night) and 1x tablet of thyroxine and a daily injection of growth hormone at night. he is such a placid boy and this does not faze him at all which i am so thankful for he has had this condition since birth (and my god the night that the doctors and nurses first thought that there was something amiss i have never heard my son sream and cry so much :crying: and was so scary being a first time mum and all) although at first the doctors were not to sure what was going on with my son as his blood sugars kept on dropping dangerously low which the now growth hormone helps to keep that is check. The way that the doctors and specialist found that he had this condition was he had a micro penis and they did a head examination and his pituitary gland was much smaller then what it should be but he has had three shots of testosterone which sorted out his micro penis and we will have to have a mri scan when he is a bit older so they can check if it has grown :fingerscrossed: so this is what my little boy has and he is just so brave :D.

[coreysmummy]

Well what a w/end we just had on satauday my ds seemed very tired for some reason and at first we just thought he was extra tired but no we could hardly wake him on satauday at all so of course straight to hospital he went and once he got there they checked him out and first didn't know what was going on so they gave him a triple does of cortisone which woke him up for an hour then went dozed off again then once he was in the childrens ward he was put on a iv drip a course of cortisone every four hours and some anti antibiotic's to help him by 3am on sunday morning he woke up and was a bit more perky and seemed almost back to normal thank goodness and stayed up for 3 hrs then went back to sleep for 2 hrs then when he woke up in the morning he was a competently different boy he was happy sitting up trying to stand up again and back to his happy self and that day he saw lots of nurse's and doctors to see why he just dropped like that he had test's after test's done on him and still to no avail so they left him on the iv the course of cortisone and antibiotic's and had to stay on in hospital fo another night then this morning (monday) he was again perky and happy and again the doctors came around and this time we had a gastro pediation because on one of his test's his liver levels went a bit hay wire but they didn't think anything to bad so that was good then we saw my ds's spelilist and she said he was ok to come home but we still do not know why my beatiful ds went down all the doctors could think of is a bit of stress so this w/end was defintly a high stress and scary w/end for all of us but we are just glad we are home now and he is a happy and content boy that we know and love :valentine:

[Nowhere]

Hey

Sory to here of your and your sons stuggles, My Dd is also growth hormone deficiant and has the major sugar issues because of it as well, Her sugars would drop with in half hour of her feeds stopping, She is also on growth hormon e needles and has been for over a year now, We are starting to notice how much they are helping.

I hope you see good results with you lil man soon

[coreysmummy]

Thanks mumtomonkey i to hope your little girl is ok and that her condition does not bother her to much