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In October 2009, I was doing my daughter's hair in the bathroom (She turned 11 in January 2010). She said she didn't feel well and needed to sit...that was all I got as she passed out. I eased her to the floor as she went down and she immediately began to shake, her arms were up over hear head shaking. She was also gurgling. It stopped almost as fast as it started and within about 30 seconds, she was asking me what had happened. I was in a sort of shock, not quite sure what had just happened. I called the pediatrician who had me take her for blood work and an EEG. Unfortunately the EEG results were not communicated to the pediatrician, so when they called back the blood test results that showed she was anemic and needed to start taking an iron supplement, I assumed all tests were clear. We had no further issues other than insomnia which, other than increasing in severity over the past months and has recently become a large issue for her, had been pretty well managable.

In April 2010, she had a true Tonic Clonic Seizure. I was not in the room to witness it, but it began with a cry out which sent me running and then a fall to the floor and convulsions. This time she seized for at least 30 seconds. I called an ambulance. After the seizing stopped, she remained unconscious on the floor. By the time the paramedics arrived, she was coming out of it, but not enough to understand what had happened and fought them. We were taken to the nearest Children's Hospital, where her EEG had been performed. She was stabilized and we were sent home with an appointment with a neurologist days later. It was at this appointment that we were told that the October 09 EEG results indicated that they were "Abnormal due to both focal and generalized epileptiform discharges suggestive of an underlying seizure disorder". She was started on Keppra and worked up to a 1,500mg dosage. An MRI was also ordered.

The MRI was completed on 4/30/10 and showed the following Impression:
1 ~ No identifiable cause for seizure.
2 ~ On saggital thin section T2 imaging there appears to be subtle focal thickening of the upper pituitary infundibulum. Correlate please with any clinical features of neuroendocrine dysfunction (Central Diabetes Insipidus). Consider repeat MR imaging in 3 months at which time high resolution pituitary imaging is recommended without and with contract.
3 ~ Small pineal cyst likely of no clinical significance (size: 7mm maximal dimension)

We met with the neurologist to go over the findings. He indicated that the thickening could be simply caused by her entry into puberty (she began with arm hair in 2008 and began menstruating in 12/09) and that the cyst was of no concern. Frustrated by lack of any real answers, we asked if there was anything else that could be causing her seizures. He reviewed her ER visit and found that her QTc was 483 in the ER after the April seizure and referred us to a cardiologist. Echocardiogram and stress tests were clear. Tilt table test showed her exhibiting blurry vision and sweats and beginning to lose consciousness within 5 minutes of being lifted and she was taken back down. Family EKG's were performed. She was at 427, I was at 424, her father was at 333 and her half brother was at 396. We were told all within normal range. It is worth noting that her half brother had a reaction to the Pertusses vaccine at 4 months old and was hospitalized for a week and sent home needing a daily shot of ACTH (I could have added an extra letter here, it's been ages!) to recover. He is now 16 almost 17 and has never had another problem, above average intelligence and all!

In May 2010, she had another seizure. They took her blood sugar and said she was normal at 118. She was taken by ambulance to the local ER. They contacted her neurologist who recommended increasing her dosage to 2,000mg of Keppra per day. Within 30 minutes of getting her home and settled in, she had another seizure. I called the ER and was told to take her by ambulance to the children's hospital if she had another for observation. She did not seize again that day. Both of these seizures were different than the last two in that both started with a stare/gaze that lasted for approximately 10 seconds before the right side of her body tightened up and she went into Tonic Clonic seizures. There was no cry out either time.

On August 10, 2010, she had another seizure, same as the last two with the stare/gaze, no cry out and then Tonic Clonic. It was over a long weekend and she had been up late for 3 nights running and got up early, so neurologist said NOT to increase her dosage but to watch her sleep.

On August 13, 2010, second MRI was performed.
History: Seizures, Detection of Pineal Cyst, question of a mild thickening of the pituitary infundibulum.
Findings: The previously noted 8.2mm in maximal AP dimension cyst of the pineal gland now measures 9.9mm. There is septation within the cyst. *Please note that size of cyst per previous MRI was 7mm, not 8.2mm*
Other midline structures show stable appearance of the hypothalamus optic chiasm and infundibular recess and infundibulum of the pituitary gland. T1 and T2 signal features of the pituitary gland are normal. With contrast administration, there is stable enhancement of the pituitary gland and infundibulum. Question having previously been raised over subtle thickening of the upper pituitary infundibulum. Physiologic enhancement of the brain is noted.

This impression:
1 ~ Minimal interval growth of septated pineal cyst. Measuring just under 1cm in maximal dimension. No mass effect upon the tectum.
2 ~ No cortical malformation or developmental anomaly the brain.
3 ~ Normal for age appearance of the pituitary gland including anterior lobe, posterior lobe, and infundibulum, without and with intravenous contract.
Code 20

When I received the call regarding these findings, I let them know I was concerned that between May 2010 and August 2010, she gained approximately 18 pounds and her chest size increased from an A cup to a D and also had developed stretch marks on her hips and chest. They ordered blood work to check her thyroid and called me back a couple days later to tell me the numbers, while on the high side, were within normal range and that for all further care I would need to coordinate with her pediatrician. We'd been dumped!

We have met with her pediatrician and are having a sleep study done this week and are meeting with an endocrinologist soon as well. The pediatrician says that if all comes back clear, we will then proceed to speaking with a neurosurgeon regarding the cyst. He does not have access to any of the bloodwork that was done, but says the endocrinologist will cover those bases.

There is no history in either her fathers or my side of the family of seizures of any kind. Thyroid disorders ARE rampant in my family, my mother is on lifelong medication as is my brother, who had to use radioactive iodine to fix his thyroid. I've always had mine tested and am always told it is fine, however, I do have a tendency to pass out and lost approximately 40 pounds without trying about 18 months ago and have kept it off, despite not doing anything to have caused it. I was diagnosed with mono in January 2009 and a full year later was told that my white cell counts are still high? I've had bloodwork to check thyroid, an endoscopy, colonoscopy, been tested for Crohn's and Celiac, all clear but still suffering horrible gatrointestinal issues with no explanation.

My questions are:

1 ~ Can a pineal cyst cause an abnormal EEG?
2 ~ Where there are no identifiable causes for seizure, why is this cyst not being highly suspected?
3 ~ Is there a threshold for size on a cyst like this where it becomes more of an issue? I've researched and have found people who have had 1cm cysts removed and others with 2+cm cysts that can't get help?
4 ~ Could a neuroendocrine disorder cause an abnormal EEG and could it manifest itself (if had by mom and passed on to children and grandchildren) in different ways, such as my sons infantile seizures, gastrointestinal issues and seizures?

Thank you in advance for your reply and information!!

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Hi Candi,

Sorry to hear about your daughter, seems like you have been through a lot!

I have a Pineal Cyst, it measures 1.2cm...I have seen 2 neurosurgeons, the second one being yesterday. They have both recommened waiting to have surgery. They would like me to wait 3 months, have another MRI, and if it has grown, discuss surgery options.

My symptoms have been primarly headaches, everyday...along with confussion & vision problems. I have not had a seizure so I havnt had an EEG. I have heard other people recommend having my hormones tested, but I havnt gone that route yet.

As far as a threshold for surgery, it's hard to say...I have heard the same you have. I am comfortable with waiting the 3 months to have it checked again. My dr has said that cyst/tumors in this area are usually slow growing.

Sorry I don't have a lot of info...I am new to this also!
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My 8 yo daughter has a 1 cm pineal cyst. She also recently had a seizure. Her symptoms had typically just been severe migraines and vocal tics. They ordered an eeg which showed that the left side had slower waves than the right. But her neurosurgeon said it doesn't have to do with the cyst. As a matter of fact, the neurosurgeon has stated that none of her symptoms are related to her pineal cyst. And no one can tell me what the cause of the abnormal eeg is. I'm incredibly frustrated!
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Hi Candi,

I also have a Pinel cyst I have had it for God knows how long, but it was discovered when I was 17 (I am 40 now) I am currently having troubles with my vision and headaches. Almost like my head feels full. Also having problems with my mensies and prolactin levels. I too am having a rough time with this, but just know you guys aren't alone on this journey. There are a lot of us ❤️
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My daughter had a pineal cyst and we were told it was not causing her problems...seizures, constant headaches that never went away for years, trouble sleeping, head feeling full, body pain, dizziness, ringing in ears, pain behind eyes, and more. She had it removed over a year ago by Dr. Dong Kim and all of those things are gone. She’s off her seizure medicine and no more seizures. Dr. Kim says the size of the cyst doesn’t matter and even the small ones can cause debilitating symptoms. We’ve seen firsthand how removing it has been a lifesaver. I hope this helps!
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