Rathke's Cleft in 12 year old

[swreeder70]

My son has been having some major medical issues for the past few months.    The initial onset of his symptoms were much like diabetes / low blood sugar.  Vertigo, vision problems, shaky feeling, no energy, nausea, head ache, pale completion, obsessive thirst, frequent urination, aches and pains.   We have also since discovered that his blood pressure drops (80/55 or lower) when he is feeling bad.

So we started down the testing path.   We have had him to several Dr's and have not made a lot of progress.   He has tested positive several times for low cortisol.   His MRI has shown a 6MM X 6MM Cyst and was classified by the radiology Dr as a probable Rathke's Cleft cyst.

Neurologist has put him on  for treatment of  amitriptyline for the Headaches and classified the cyst as an incidental finding.   However, he cannot explain many of the symptoms.

Endocrinologist is concerned about the very low cortisol and has also noted some serum issues in his urine.  However she indicates all other hormone levels are looking OK in the testing.   She states it is unusual to have low cortisol without other levels being off.    They have ordered a water deprivation test along with hormone stimulation testing.  (Diabetes Insipidus or Addisons Disease have not been ruled out)

Neurosurgeon visit this week with a person that specializes in Rathke's Cleft and other Petuitar Cysts in Children.

We are just searching for answers.   He is a very good student and has always been very active.  Since this has started on bad days he is not off the couch more than a few hours.  He hasn't been to school in well over a month and his quality of life has plummeted.

Any suggestions would be greatly appreciated!

[rumpled]

Why did they botch the testing like that?
It is hard enough to get this testing and insurance will usually not let you repeat it so why are they doing something like that? If the doc looks at the results, it will harm his chances of getting care.

Can you get to a pituitary center?

[swreeder70]

Just completed a CRH stim test.   The results showed partial response to the testing.   Testing also may have been tainted somewhat as they allowed my son to eat during the test and the labs missed part of the screening in the urine sample.

Next he is being sent in for ACTH Stim test and his Pediatric Endo is referring him over the Diagnostic Center for difficult illnesses at the Childrens Hospital of Philadelphia.

Meanwhile, we see his symptoms increasing more each day.

The testing processes continues to be a slow long road for us.

[rumpled]

I will send you some links including one to an organization that helps out kids with pediatric disorders that include pituitary disorders.

I think your current doctors are being rather stupid sorry to say - low cortisol is a life threatening condition. Why are they playing with his life? They should refer him immediately to a competent pediatric endo that can do the proper testing and get him on the meds he needs. He also needs testing and monitoring for the rest of his life - and he may or may not need surgery. I had the same surgery (for different tumors - I had high cortisol) and while it may seem scary as long as you get a super experienced doc, it can go well.

I don't have adrenals now so I live the low cortisol - if his BP gets low, salt helps.

DI is also something that needs to be managed.

Once his meds get managed he can get better but he may still have quality of life issues - he has to be careful and learn to stress dose, keep hydrated, etc. but all this depends on the skill of his doctors and test results.