My son is 13 and has been experiencing dizziness, lightheadedness and distorted vision for several years now. I took him for a sedated MRI on 1/10/11. In the past, the pediatrician had mentioned "Alice in Wonderland" Syndrome and recommended just in the passed 3 years to get an MRI done. I went for his results today and the PA of his Neuro said he has a "cluster" of pineal cysts. He is to follow up with a contrast MRI in May 2011. I feel that there is so much "gray" area when trying to educate myself with this. The cause is unknown... the treatment, well, guess that depends on his symptoms over time. If anyone would like to write me in reference to this, please feel free. It is very hard, as a single mother of an only child, to deal with such results and no real answers. ***@**** is my email. To everyone out here having to deal with this personally or with family, my heart really goes out to you.
I would still get him checked out since he has puberty issues. I had sent you a PM with some info.
My apologies for not seeing this until today. I kept looking but for some reason this reply had not shown up as of the 22nd of Dec. I am so grateful for your input;)
Went into my/his endocrinologist on 12/20 to find that his cyst has actually shrunk. He showed me the 3 MRI's and the measurements. He recommend we do nothing at this time but manage the pain and consider measures to manage his sinus issues. Since then I have given him melatonin at bedtime and am managing his sinus with meds and it seems to be helping. I recognize it may be placebo so I'm documenting all I do and his responses.
I found a specialist at U of M (500 miles away) and plan to contact her to see if she will at minimum review his records and my findings. Now that I see your post I will do my best to see what I can find with the specialists recommended and ask his current endo to do the bloodwork you suggest. Thank you-I'll keep you posted!
I would take the information that you have, and contact a neuro-endo. I will give you an organization that will guide you. The precocious puberty is something that should be investigated especially with a lesion so close to the optic nerves and the pituitary, as well he is obviously symptomatic. A normal endo, sadly, is not skilled so you need to seek out a pituitary center - look to university centers. But you can get duds even there.
Due to the nausea and puberty issues, even though I am a layman, I would guess he has a few more issues than just the pineal cyst.
As for bloodwork, he needs pituitary studies as well as the melatonin - that is what the doctors are not picking up on. ACTH, TSH, IGF-1, cortisol, free T3, Free T4, CMP, LH, FSH, bioavailable testosterone, estradiol, dhea sulfate, sex binding hormone, vitamin D, ferratin and add melatonin for him as a basic start.
I forgot to mention that his MRI 1 year ago was measured as 8mm, is now 12mm and there were both with and without contrast done.