1 1/2 years ago my now 10 year old had 2 MRI's with contrast due to early onset puberty and headaches.His bloodwork showed a level 30 melatonin level -I do understand this varies greatly and is hard to pinpoint but the sleep clinic is shut down here now. His hormone levels are above average. He now has headaches 5 out of 7 days, usually morning and night, treated effectively with OTC's. His sleep patterns are very unstable- can't get to or stay asleep, is difficult to awaken. He is frequently nauseated and his depression is darkening. he sems to have sinus issues consistently. Last week he had a "march"; shooting pain in 1 arm that lasted through most of the day. His last MRI has shown a 12mm Pineal cyst and we are seeing an endocrinologist on Monday to get his bloodwork done. We have not seen a neurologist but his file has been reviewed by 2 ; 1 at U of Michigan, 1 at Children's in WI. Both say they will not see him because there is nothing they can do at this time.
We have changed our diets in the hopes of decreasing possible headaches triggers, are trying to get his sleep cycle better with no luck and are doing all we can short of drug therapy for the depression. We are journalling all we can to hopefully find patterns or clues. I have zero confidence in his pediatrician but believe the endocrinologist can help in many ways.
A: is there anything else we can do?
B:is there any facility/physician you can suggest that may have a better handle on this? We will go anywhere-he cannot live his life in pain.
C:Is there any information or specialists regarding melatonin studies? We are looking into Northwestern however the neurologist specializes in adult melatonin studies.
D: What bloodwork should be done? Where would this recommendation come from (in order to help the endocrinologist understand why they would be needed)
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.
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!
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.
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