Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 hi everyone! we just got christopher's results from his stimulation tests and the endo dr. said that it showed that his pituitary gland may not be functioning. he now needs to have an mri done to see what is up. has anyone else ever been told this or had this checked. if it it not working at all he will definitly need the gh otherwise there will be no growth. we are going to be starting the ght after the holidays. he also said if the gland is not working he will need other hormone therepy as well as he gets older. if anyone else has had this please let me know. thanks! jodie (nicholas-5 nonrss, christopher-3 on the 15th rss, johnathon-6 months on the 17th nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 You may want to check in with MAGIC's Growth Hormone Deficient division or their PanHypoPit group. Are doctors absolutely sure that has RSS too? Because this would mean that got stuck with two different medical issues! A pit. not working has other issues, so after the MRI and follow up doctor appt, give them a call at 800-3MAGIC3 and ask for Kim Locke. He is awesome and will talk to you about stuff that I don't know! Salem (RSS division - MAGIC) > hi everyone! > we just got christopher's results from his stimulation tests and the > endo dr. said that it showed that his pituitary gland may not be > functioning. he now needs to have an mri done to see what is up. has > anyone else ever been told this or had this checked. if it it not > working at all he will definitly need the gh otherwise there will be > no growth. we are going to be starting the ght after the holidays. he > also said if the gland is not working he will need other hormone > therepy as well as he gets older. if anyone else has had this please > let me know. thanks! > jodie > (nicholas-5 nonrss, christopher-3 on the 15th rss, johnathon-6 months > on the 17th nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 Hi Jodie, I have not posted in a long time, however our daughter was also diagnosed as having a pituitary dysfunction. She does not make hormones necessary to control many things. She also has a diagnosis of RSS is gtube fed. We began her GHT in October. She is 23 months and 19 pounds and 29 inches. It has been very frustrating in terms of trying to decifier some comments made of growth hormone, however we learned that it was essential for her systems to function appropriately. She like every other child receiving growth hormone will adjust to the daily injections, I hope. I did request further information from magic, but at the moment I was just mailed the brochure and quite frankly I am not sure what to ask for at this point. Feel free to ask of other questions. Debbie (mom to Mollie 23 months 19 pounds 29 inches) > hi everyone! > we just got christopher's results from his stimulation tests and the > endo dr. said that it showed that his pituitary gland may not be > functioning. he now needs to have an mri done to see what is up. has > anyone else ever been told this or had this checked. if it it not > working at all he will definitly need the gh otherwise there will be > no growth. we are going to be starting the ght after the holidays. he > also said if the gland is not working he will need other hormone > therepy as well as he gets older. if anyone else has had this please > let me know. thanks! > jodie > (nicholas-5 nonrss, christopher-3 on the 15th rss, johnathon-6 months > on the 17th nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 Hi Jodi and :-) I have a question based on the pituitary gland not functioning properly. Janelle's MRI's showed the pituitary gland " small but present " I do not know how they would know if it was functioning properly. early on when Janelle was 4 months old they did a blood test for GH and said she was not deficient. Would a nonfunctioning or poor functioning pituitary gland shown symptoms in that blood test? his may be a question for Dr. Harbison. J > > Reply-To: RSS-Support > Date: Sat, 13 Dec 2003 03:17:56 -0000 > To: RSS-Support > Subject: pituitary not functioning > > hi everyone! > we just got christopher's results from his stimulation tests and the > endo dr. said that it showed that his pituitary gland may not be > functioning. he now needs to have an mri done to see what is up. has > anyone else ever been told this or had this checked. if it it not > working at all he will definitly need the gh otherwise there will be > no growth. we are going to be starting the ght after the holidays. he > also said if the gland is not working he will need other hormone > therepy as well as he gets older. if anyone else has had this please > let me know. thanks! > jodie > (nicholas-5 nonrss, christopher-3 on the 15th rss, johnathon-6 months > on the 17th nonrss) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 hi jennifer- thanks for the response. they are 99% sure he has rss. but now this pipossible pit problem has shown up when we had that stimulation testing done. his gh level was tested a year ago and they said he was not deficient then, so this is something new.he will definitly be starting ght, probably after the holidays (insurance has to ok it first). jodie > > hi everyone! > > we just got christopher's results from his stimulation tests and > the > > endo dr. said that it showed that his pituitary gland may not be > > functioning. he now needs to have an mri done to see what is up. > has > > anyone else ever been told this or had this checked. if it it not > > working at all he will definitly need the gh otherwise there will > be > > no growth. we are going to be starting the ght after the holidays. > he > > also said if the gland is not working he will need other hormone > > therepy as well as he gets older. if anyone else has had this > please > > let me know. thanks! > > jodie > > (nicholas-5 nonrss, christopher-3 on the 15th rss, johnathon-6 > months > > on the 17th nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 hi debbie! thank you so much for your response. are there any other hormones that you need to give her besides gh at this time? or any meds she is on because of it. you can privately email me if you want at jlcals2003@... before you found out she had a pit problem did she get tired real easy or did her urine start having a strong odor? anything you can tell me would be great. and i hope you daughter is feeling well, i to worry about the shots we will start in jan. jodie (nicholas-5 nonrss, christopher-3 on monday rss 22lbs 33 " , johnathon- 6 months nonrss) -- In RSS-Support , " mcmollie2003 " wrote: > > Hi Jodie, > I have not posted in a long time, however our daughter was also > diagnosed as having a pituitary dysfunction. She does not make > hormones necessary to control many things. She also has a diagnosis > of RSS is gtube fed. We began her GHT in October. She is 23 months > and 19 pounds and 29 inches. It has been very frustrating in terms of > trying to decifier some comments made of growth hormone, however we > learned that it was essential for her systems to function > appropriately. She like every other child receiving growth hormone > will adjust to the daily injections, I hope. I did request further > information from magic, but at the moment I was just mailed the > brochure and quite frankly I am not sure what to ask for at this > point. Feel free to ask of other questions. > > Debbie (mom to Mollie 23 months 19 pounds 29 inches) > > hi everyone! > > we just got christopher's results from his stimulation tests and > the > > endo dr. said that it showed that his pituitary gland may not be > > functioning. he now needs to have an mri done to see what is up. > has > > anyone else ever been told this or had this checked. if it it not > > working at all he will definitly need the gh otherwise there will > be > > no growth. we are going to be starting the ght after the holidays. > he > > also said if the gland is not working he will need other hormone > > therepy as well as he gets older. if anyone else has had this > please > > let me know. thanks! > > jodie > > (nicholas-5 nonrss, christopher-3 on the 15th rss, johnathon-6 > months > > on the 17th nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 Hi laura- thanks for responding. christopher had a Arginine and Clonidine stimulation test done and thats when they found that there was a possible problem. we have to have the mri done to confirm that there is a problem. they said the test could have given a false postive result. he also had his gh level checked a year ago and at that time he was not deficient. when i find more out i will let everyone know. jodie > Hi Jodi and :-) > > I have a question based on the pituitary gland not functioning properly. > Janelle's MRI's showed the pituitary gland " small but present " I do not > know how they would know if it was functioning properly. early on when > Janelle was 4 months old they did a blood test for GH and said she was not > deficient. Would a nonfunctioning or poor functioning pituitary gland shown > symptoms in that blood test? his may be a question for Dr. Harbison. > > > J > > > From: " jlcals2003 " > > Reply-To: RSS-Support > > Date: Sat, 13 Dec 2003 03:17:56 -0000 > > To: RSS-Support > > Subject: pituitary not functioning > > > > hi everyone! > > we just got christopher's results from his stimulation tests and the > > endo dr. said that it showed that his pituitary gland may not be > > functioning. he now needs to have an mri done to see what is up. has > > anyone else ever been told this or had this checked. if it it not > > working at all he will definitly need the gh otherwise there will be > > no growth. we are going to be starting the ght after the holidays. he > > also said if the gland is not working he will need other hormone > > therepy as well as he gets older. if anyone else has had this please > > let me know. thanks! > > jodie > > (nicholas-5 nonrss, christopher-3 on the 15th rss, johnathon-6 months > > on the 17th nonrss) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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