My son became sick yesterday after playing at the park with friends. While generally a very healthy child, Reagan gets easily dehydrated and as a result vomits, his body temperature rises, and suffers pain that emanates from the brain: headaches or in this case earache. For years we had no idea why this happens to him.
When our son, Reagan, was 4 and a half years old, my husband finally took him to get a Brain MRI scan. Various studies have shown that children under the age of three that have gone under general anesthesia are at higher risk for developmental delays. Taking into consideration my son's existing delays, complicating it further was not something we were willing to gamble. The most serious of complications, death, haunted us through the entire experience. The fact is, you never know how a person will respond to it for the first time. And the second time is just as scary as the first.
Although we had at least two previous prescriptions for this procedure, we were worried about putting our son under general anesthesia at such a young age.
The MRI Scan revealed that Reagan had multiple pineal cysts which altogether amassed 1 cm large in size. These cysts are fluid-filled sacks located on the Pineal Gland (often referred to as 'the third eye') in the very center of the brain at the end of the brain stem and next to the pituitary gland. On the MRI scan photograph to the right, the cyst looks like a porous ball. The Pineal Gland itself is not very well researched, although it is one of three glands that comprise the Endocrine System in the brain. Its function is often referred to as insignificant. What they know about its function is that it is responsible for producing melatonin, something children produce an abundance of naturally that enables them to sleep more than adults do. As you grow older, the Pineal Gland produces less melatonin. The only form of treatment available for a growing, symptomatic Pineal Cyst or Tumor is surgical resection. But because of its location, it is the most difficult surgery to perform. In most cases pineal cysts are benign. Neurosurgeons will only remove the cyst if it's symptomatic and growing. Most 'neuro' doctors refer to this cyst as an 'incidental finding.' They will likely tell their patients that 'it is not causing their migraines,' or my favorite, 'It is not causing the autism,' and that they have nothing to worry about. But a symptomatic Pineal Cyst is something that warrants monitoring, concern, and credit for causing a myriad of problems - it is not something to disregard or take lightly. This blogger writes about his Pineal Cyst and his wishes to have it removed, and provides great visuals that show exactly where the cyst lies in the brain.
So what symptoms can this so-called 'incidental finding' cause? I did a lot of online research to find out its symptoms and worse, its potential complications. Any Pineal Cyst larger than 7 mm can cause symptoms. Symptoms include: migraines that will not go away with medication; drastic vision loss; eye paralyses of upward movement; regularly dilated pupils; irregular sleep patterns; ringing in the ears; precocious (or early) puberty; it can interfere with the flow of the erebrospinal fluid (CSF); it interferes with the inability to regulate one's own body temperature when pressing up against the hypothalamus gland, described by patients like bee stings on their skin or hot-flashes; and worse, it can lead to a life threatening condition: hydrocephalus. The inability to regulate one's one body temperature and interrupted circadian rhythm. That's it! That what's wrong with my son, both my husband and I concluded.
Since birth, Reagan was not able to regulate his temperature, which is why as an infant he who would sweat through his clothes and drench his crib sheets. He would not tolerate blankets and long sleeve PJ's. And boy was he thirsty, all the time. They say babies should not drink water, but Reagan couldn't do without it. Without being fully hydrated, he would get sick, e.g. vomiting, constipation or diarrhea, and body fevers that would last a week, and sometimes longer. And multiple doctors never knew what was wrong. This was especially apparent when he started the early intervention educational program and the staff would not properly hydrate him, which prompted us to include the directive in the Family Support Plan. This was one direct symptom of the Pineal Cyst that we were able to confirm, mainly because he cannot communicate his feelings. We know he sometimes has headaches, despite the fact that he cannot verbally say this to us. When they occur, he lays in the dark and goes to sleep for hours during the day, something he would never do otherwise. And his body temperature always rises, so we know it is attributed to him not being properly hydrated. It wasn't a coincidence that during Pre-K this would always happen when the teacher was absent from school.
So my research led me to a brain surgeon, Dr. Shahinian, in California and his practice, The Skull Base Institute. He pioneered the minimally invasive procedure to surgically remove this and other cysts and tumors located in this region of the brain by simply entering through a dime-size hole in the back of the skull with a cyber knife. He explains this procedure in an episode of The Doctors, featuring Christa's Brain Surgery, a teenage girl's experience with her Pineal Cyst, before and after the surgery that gave her back her life. The symptoms become so severe that they had overwhelmed her life. She could no longer see. The migraines never dissipated. She had to stop going to school - could not leave the darkness of her room. She had gone to multiple doctors that all said the same thing, "her symptoms were not caused by the cyst." Her post-surgery results proved otherwise. Like Christa's story, there are others. Here are links to Dylan and Ashley's stories.
So I know that my son's Pineal Cyst is not causing his autism, as the doctors like to say. And because of the autism, they can't confirm that my son's loss of speech was a result of the cyst. But we know our children best. Parents are our children's best advocates. And with information so vastly available on the internet, parents are often more motivated than medical doctors to research and find the causes of symptoms in our kids. What I do know is that my son's cyst is large for a 4 year old brain, and because of his confirmed symptoms since birth, I know he was born with this cyst. Reading of other people's experiences with their cyst has confirmed for me the relationship between this cyst and difficulty with speech. I read about a woman who could no longer speak out the ending syllables of many words because of this cyst. In analyzing the manner in which my son lost his speech, incrementally dropping the ending sounds of words he once consistently spoke so well over a duration of two years to now only sounding out the first letter, leads me to instinctively believe that this cyst may be a contributing factor.
I was surprised to learn through posts on autism groups/forums about the many children with autism who naturally have dilated pupils or how so many have sleep difficulties regularly treated with melatonin supplements, and have wondered whether any of these children may have a symptomatic Pineal Cyst previously disregarded as an 'incidental finding.'
When our son, Reagan, was 4 and a half years old, my husband finally took him to get a Brain MRI scan. Various studies have shown that children under the age of three that have gone under general anesthesia are at higher risk for developmental delays. Taking into consideration my son's existing delays, complicating it further was not something we were willing to gamble. The most serious of complications, death, haunted us through the entire experience. The fact is, you never know how a person will respond to it for the first time. And the second time is just as scary as the first.
Although we had at least two previous prescriptions for this procedure, we were worried about putting our son under general anesthesia at such a young age.
The MRI Scan revealed that Reagan had multiple pineal cysts which altogether amassed 1 cm large in size. These cysts are fluid-filled sacks located on the Pineal Gland (often referred to as 'the third eye') in the very center of the brain at the end of the brain stem and next to the pituitary gland. On the MRI scan photograph to the right, the cyst looks like a porous ball. The Pineal Gland itself is not very well researched, although it is one of three glands that comprise the Endocrine System in the brain. Its function is often referred to as insignificant. What they know about its function is that it is responsible for producing melatonin, something children produce an abundance of naturally that enables them to sleep more than adults do. As you grow older, the Pineal Gland produces less melatonin. The only form of treatment available for a growing, symptomatic Pineal Cyst or Tumor is surgical resection. But because of its location, it is the most difficult surgery to perform. In most cases pineal cysts are benign. Neurosurgeons will only remove the cyst if it's symptomatic and growing. Most 'neuro' doctors refer to this cyst as an 'incidental finding.' They will likely tell their patients that 'it is not causing their migraines,' or my favorite, 'It is not causing the autism,' and that they have nothing to worry about. But a symptomatic Pineal Cyst is something that warrants monitoring, concern, and credit for causing a myriad of problems - it is not something to disregard or take lightly. This blogger writes about his Pineal Cyst and his wishes to have it removed, and provides great visuals that show exactly where the cyst lies in the brain.
So what symptoms can this so-called 'incidental finding' cause? I did a lot of online research to find out its symptoms and worse, its potential complications. Any Pineal Cyst larger than 7 mm can cause symptoms. Symptoms include: migraines that will not go away with medication; drastic vision loss; eye paralyses of upward movement; regularly dilated pupils; irregular sleep patterns; ringing in the ears; precocious (or early) puberty; it can interfere with the flow of the erebrospinal fluid (CSF); it interferes with the inability to regulate one's own body temperature when pressing up against the hypothalamus gland, described by patients like bee stings on their skin or hot-flashes; and worse, it can lead to a life threatening condition: hydrocephalus. The inability to regulate one's one body temperature and interrupted circadian rhythm. That's it! That what's wrong with my son, both my husband and I concluded. Since birth, Reagan was not able to regulate his temperature, which is why as an infant he who would sweat through his clothes and drench his crib sheets. He would not tolerate blankets and long sleeve PJ's. And boy was he thirsty, all the time. They say babies should not drink water, but Reagan couldn't do without it. Without being fully hydrated, he would get sick, e.g. vomiting, constipation or diarrhea, and body fevers that would last a week, and sometimes longer. And multiple doctors never knew what was wrong. This was especially apparent when he started the early intervention educational program and the staff would not properly hydrate him, which prompted us to include the directive in the Family Support Plan. This was one direct symptom of the Pineal Cyst that we were able to confirm, mainly because he cannot communicate his feelings. We know he sometimes has headaches, despite the fact that he cannot verbally say this to us. When they occur, he lays in the dark and goes to sleep for hours during the day, something he would never do otherwise. And his body temperature always rises, so we know it is attributed to him not being properly hydrated. It wasn't a coincidence that during Pre-K this would always happen when the teacher was absent from school.
So my research led me to a brain surgeon, Dr. Shahinian, in California and his practice, The Skull Base Institute. He pioneered the minimally invasive procedure to surgically remove this and other cysts and tumors located in this region of the brain by simply entering through a dime-size hole in the back of the skull with a cyber knife. He explains this procedure in an episode of The Doctors, featuring Christa's Brain Surgery, a teenage girl's experience with her Pineal Cyst, before and after the surgery that gave her back her life. The symptoms become so severe that they had overwhelmed her life. She could no longer see. The migraines never dissipated. She had to stop going to school - could not leave the darkness of her room. She had gone to multiple doctors that all said the same thing, "her symptoms were not caused by the cyst." Her post-surgery results proved otherwise. Like Christa's story, there are others. Here are links to Dylan and Ashley's stories.
So I know that my son's Pineal Cyst is not causing his autism, as the doctors like to say. And because of the autism, they can't confirm that my son's loss of speech was a result of the cyst. But we know our children best. Parents are our children's best advocates. And with information so vastly available on the internet, parents are often more motivated than medical doctors to research and find the causes of symptoms in our kids. What I do know is that my son's cyst is large for a 4 year old brain, and because of his confirmed symptoms since birth, I know he was born with this cyst. Reading of other people's experiences with their cyst has confirmed for me the relationship between this cyst and difficulty with speech. I read about a woman who could no longer speak out the ending syllables of many words because of this cyst. In analyzing the manner in which my son lost his speech, incrementally dropping the ending sounds of words he once consistently spoke so well over a duration of two years to now only sounding out the first letter, leads me to instinctively believe that this cyst may be a contributing factor.
I was surprised to learn through posts on autism groups/forums about the many children with autism who naturally have dilated pupils or how so many have sleep difficulties regularly treated with melatonin supplements, and have wondered whether any of these children may have a symptomatic Pineal Cyst previously disregarded as an 'incidental finding.'
