my 20 month old baby boy was just diagnosed with this disease and i have been worried about all the possibilities that go along with it. he has an MRI a week today to check for tumors and well it seems the meds that once were working are no longer working and i am not sure how much more i can take. he does not sleep, he is always crying he drinks way more then an average of 4 adults drink in a 24 hour period and he pees ALOT..he has also been running high fevers on and off with no signs of illness......the doctor has told me that she has had only 3 cases of this in a child so young and well all three cases had a tumor..it is very rare apparently. does anyone suffer from this or have any idea how to help me cope..thanks

Hi Worriedmommy,

Look under the depression board, a poster named stick2013 was diagnosed with it, and due to incomplete growth of pituitary gland I think. It's a few posts back, but in the last month or two. This could be something to discuss with your doctor. I hope all goes well for you and your little son.

Look under stick2013 post entitled Good News of 7-17-09 ; just found it!

[This Message was Edited on 07/29/2009]

I am hoping by now that things have quieted down for you and your son.......If not, I have a few questions to ask.......Has he had a thirst deprivation test? Have they titrated his meds up as of yet????

Please let us know what's happening.......

I am so sorry to hear that your son has such a problem.

If he were mine, the first thing I would do would be looking for a specialist to give me a second opinion. I would start first with an Endocrinologist, the diabetes specialist, and call around and ask them if they have experience with pediatric endocrinology. There should be such a specialist in a larger city close to you if not in your own town. Or, there should be one a the closest Children's Hospital.

When you get an appointment, call the hospital where you got your MRI done, their Medical Records Department, and ask them for a copy to take to the specialist who you are going to see.

My first grandson had a serious medical problem when he was born that caused him to cry all the time, 24/7, and I accompanied my daughter to her pediatrician 1-2 times/week about him, trying everything, but nothing worked. His doctor was stumped and did not know what would make him so sick. After a year, everyone was going insane with all the crying, so we made an appt. for him at our closed Children's Hospital. We told this doc the entire story and before we left his office, he knew exactly what was wrong with him, he scheduled him for a surgical procedure the next week. After his minor surgery was done, he never cried again--well, no more than any other normal baby!

So, if your pediatrician has only seen 3 cases of this in children his age .... she is not experienced enough .... and begin looking for someone qualified to get a second opinion now!!!

Of course, this is just my personal opinion.

Good luck.