No problem. Keep him healthy!
Thanks Rumpled for all your help and understanding, i really can't thank you enough xxxxxx
Good Luck! I have the whole shot set up too! Make sure he gets a medic alert bracelet and you set up a good emergency kit for him! Get an anti-emitic drug too (e.g. zofran or phnergan) to try to avoid the shot - anything to keep him from getting sick! Salt tablets also help - remember that in its essence, AI is loss of salt, so anything salty when he goes downhill or gets sick is helpful! I use V-8, tomato juice, pickles etc.
Hi Rumpled, Joshua as got primary adrenal insufficiency,she wants him to have a mri scan and a blood test to see how his iron levels are,she also said his pth is raised because he as got a vitamin d deficiency.I have to go into hospital next week to learn how to give joshua injections in case he goes in to a adrenal crisis, Thanks again for all your help and advice x
Thank for all your help and advice, today is d day we are off to see the endos,i have wrote a list of all the question i what to ask her,thanks again,i will write later and tell you the out come x
Sorry! I lost track of your thread...
Let me know how your appointment goes. There is an organization called the magic foundation that you may want to contact - they can direct you to better doctors.
The whole *being sick and has diarrhea* is life threatening - and the ER may or may not know what to do - so her leaving you with no instructions is pretty silly. Please read the addison's handbook and find the chapter on emergency instructions. There is a link in the health pages. He may need growth hormone. I asked about MEN as parathyroid tumors in combo with all the other issue make me think about it - so I would ask. There are many forms and the doc may balk at testing but I would be persistent. Have you contacted NIH?
I will ask the doctor for a copy of all Joshua's test results on our next visit on the 3rd of October,she as give him Hydrocortisone to take only on sick days and told me to take him to the hospital if he starts being sick and as diarrhea , I no nothing about his pth i only no it's raised cause she sent me a letter saying his ACTH test was normal but his pth was raised, He as had a x-ray his bone age is of a ten year old but he is 15years 9 months old and he asn't gone through puberty, which i find concerning .I haven't got a clue if she is going to test him for MEN.
Please go back and insist on a copy of any and all tests. Then look at all of them. A hand x-ray is standard way to look at bone age. Not all pediatric endos are created equal. Get a copy of the tests and that way you can decide if you need another opinion.
My issue is that low cortisol can be a life threatening condition - so uh, what is his course of action? Just leave it? Let you know and what? Are they going to test him for MEN?
Thanks for replying, they tested his pituitary why they were doing this acth test fasting 8am. Doctor was a pediatric endo never got any copys of tests, just a letter saying pth was raised and cortisol was low and would discuss it next appointment all test have been blood tests, he as not had a x-ray and i don't think he as had a GH stim test. He is being tested at a childrens hospital .
Thanks for replying, they tested his pituitary why they were doing this acth test fasting 8am. Doctor was a pediatric endo never got any copys of tests, just a letter saying pth was raised and cortisol was low and would discuss it next appointment all test have been blood tests, he as not had a x-ray and i don't think he as had a GH stim test. He is being tested at a childrens hospital .
Elevated parathyroid hormone points to hyperparathyroidism - and it usually means you have a tiny tumor on your parathyroid gland. I would certainly not wait and look at getting treatment sooner rather than later.
As well as the cortisol being low - which is a separate issue, you need to be treated now. ACTH being normal only tells the doctor where the source of the issue is, not that the issue does not exist - I hope the doctor understands that? That means the issue lies with the adrenal glands - but that you still have an AI issue. Low cortisol is still a critical issue.
Also, how did they test your pituitary - did they test you at the proper time of day - fasting 8am - was your doc a neuro-endo? Did you get a copy of your tests? How was your growth issue tested? Are you at a pituitary center? Did they do x-rays? Did you get a GH-stim test?