6 months ago my daughter, 7 started her menstrual cycle. We were referred to a pediatric endo..who ran CT (and incidentally found a lung nodule-seeing pulmonologist soon) ultrasound, bone and long bone study, hormone stimulation test, and MRI. From the ultrasound they could in fact see she has fluid in the uterus and doc stated she is in fact having her menstrual cycle-but ovaries and uterus were underdeveloped and she was confused as to how this was happening. Her hormone levels were in the normal range, with her thyroid being 1.5 points above normal. After the MRI it was discovered she has a 2mm centrally located pituitary microadenoma. Differential includes pars intermedia cyst and incidentally a pineal cyst measure 3 mm, with an incidental note of an enhancing left cerebellar venous angioma.. She has referred us to a neurosurgeon at a childrens hospital to discuss how this should be treated. I am scared and confused and not sure what to think. She recently started also with bouts of blurry vision and headaches and a ringing in her left ear. Has anyone has both a microadenoma and pineal cyst and how does treatment for these usually proceed? Thanks.
I would say... find another endo and get another opinion first. My reasons for saying this is your daughter has what is called *precocious puberty* and there are many reasons for it and some of them can be the pituitary and some of them can be a genetic disorder. I would contact the Magic Foundation and talk to them as they have a foundation dedicated to rare diseases like this in children and you can contact the NIH - National Insitutes of Health in Maryland where they may accept to take care of her (that is sometimes at low or no cost, and may be at a different location as well).
What hormones were checked? Did they check ALL the testosterone - FH, LH, dhea sulfate, sex binding hormone, estradiol - ALL the pituitary hormones etc. With the pineal cyst is she having sleeping issues and did they test for melatonin? You need a large pituitary center to help her and a surgeon that has a lot (a lot - aka 500 or more) surgeries and uses endoscopic technique. This may or may not be at a children's hospital... Headaches and eye issues are for sure issues associated with pituitary issues - ear ringing they say not but a lot of us do. Get copies of everything - even the scans on CD.
Some pituitary tumors can be treated with medications - so it is important to know what type of lesion it is - so the endo is very very important to do proper testing and even in an adult, the testing is not fun and so it will be a lot less fun in a child (24 hour urine tests etc etc). I know - I had two pituitary tumors.
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