What the MRI Scan Revealed

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.'   

Pesticide Exposure and Early Childhood Cognitive Development

This is the visual that has forever changed the way I view pesticides. The two images to the left  represent drawings made by four and half year old children with low blood levels of pesticides, whose mothers also had low levels during pregnancy. The two images on the right represent those drawn by four and half year old children with high blood levels of pesticides, whose mothers also had high levels during pregnancy. This test, in which the children were asked to draw a person, was one of the many tests administered during a long-term study conducted by the Columbia Center for Children's Environmental Health. The study followed pregnant women and their children through age seven with and without exposure to the insecticide chlorpyrifos, now banned by the U.S. E.P.A. from residential use/products. However, we're still exposed to this chemical in our environment through its continued commercial and agricultural applications. It's in the foods that we eat!

This study, as well as other similar studies conducted by this center, showed direct correlations between prenatal exposure to the pesticide chlorpyrifos and delayed cognitive development in children. One study, showed a correlation between exposure and deficits in working memory and IQ at age seven.  Like autism, this study showed boys to be more vulnerable than girls to the detrimental effects of chlorpyrifos.

Upon seeing this image on my television screen featured in an educational video that my husband recorded for me, The Habitable Planet, I immediately began to research what types of pesticides are found in our foods. I came across the Pesticide Action Network's What's on My Food? website. I wanted to know what foods might contain chlorpyrifos. What I learned was astounding. Chlorpyrifos have been found in over 40 different fruits and vegetables, with the highest levels found in a single serving of my autistic son's favorite fruit: apples. And it doesn't end there. Apples contain over 42 different pesticide residues and are ranked #1 in the Environmental Working Group's Dirty Dozen Plus: their list of fruits and vegetables with the highest pesticide residues. My son eats over four apples each day and I had never purchased organic fruits and vegetables, until now. How had I not known of this sooner? Why do obstetricians not recommend to their pregnant patients to eat organic fruits and vegetables during pregnancy? Why isn't there more awareness on the subject?  These were just some the questions swirling around in my brain upon this discovery.

I believe pesticides are among the many environmental factors contributing to our autism epidemic, but this is one factor that we can at least control during pregnancy and in our children's critical early developmental years. The Pesticide Action Network reports that pesticide exposure contributes to a higher incidence of Birth defects; Neurodevelopmental delays and cognitive impairment; Childhood brain cancers; Autism Spectrum Disorders (ASD); Attention-Deficit/Hyperactivity Disorder (AD/HD); Endocrine disruption; and Cancer. Pharmaceuticals, vaccines, pollution, pesticides, etc. are all invading the natural environment and our bodies. It's not a coincidence that autism occurs most prevalently among children of older parents who have been exposed to these environmental toxins longer.

I urge all pregnant women and parents of young children to download the Environmental Working Group's 2013 Shopper's Guide to Pesticides in Produce and make the financial investment of buying 'organic' at the minimum those fruits and vegetables listed on their Dirty Dozen Plus list.  Your child's health and cognitive development is well worth the investment.  

     

School Placements: Which one is right for my child?

Under the federal law Individuals with Disabilities Education Act (IDEA), States and public agencies must provide early intervention, special education, and related services to children with disabilities (in 14 specified categories of disability) between the ages birth to age 18 or up to 22 (depending on the disability). This is the law that governs how early intervention programs collaborate with the public schools to offer a continuum of free and appropriate educational experiences to these children.  In Miami-Dade, developmentally delayed 3 year old children transition to the public schools' Pre-K ESE programs.  The Pre-ESE Program places eligible students into 9 different program models contingent on the child's needs and diagnoses. Students with an ASD diagnoses can be placed in either a highly structured full-day TEACCH classroom (8:10 am to 1:50 pm) or a less structured half-day LEAP classroom.  While enrolled in the school they may be offered weekly group speech and occupational therapy (OT) therapy.

My son was enrolled in a full-day TEACCH classroom for two years at a local elementary public school.  Throughout that two year period, I encountered many challenges starting with the administration of the school.  I don't know what it is but it seems to me that parents have lost their voice in their child's public school education.  In two years, I encountered two different principals at two different schools with the same philosophy in protecting their teachers even when their teachers are wrong. Rather than trying to resolve the issues being addressed to come up with a resolution that would satisfy all parties, both had said, If you don't like it, you can go to another school. What? Are you kidding me? I personally felt that these teachers weren't being held accountable by their school administrators. Add nepotism to the equation, as I believe was a huge factor in how my son's teacher was placed at the school in the first place, and the parents will never be heard.  Maybe it was just my luck, but my son's teacher had an attitude problem. Perhaps it was because she was very young and inexperienced, but the disrespectful cadence that she exhibited on a regular basis just didn't mesh well with my husband and I. When the teacher left on medical leave and a new teacher came in for the interim, we realized it was the teacher all along putting up the administration to make our lives difficult.  Kindness really goes along way, and I am so grateful that that is exactly what we get at my son's new school.  

One problem with my son's public school experience was the limited availability of full-day options in the county.  I needed a school placement closest to my oldest son's school because quite frankly, I can't be in two different places at the same time.  Schools offering the half-day LEAP program were plentiful compared to the full-day TEACCH program.  But what do you do with your child after 12 noon each day? Why do they have so many half-day programs versus full-day program? When young children are placed in a daycare, they are usually there all day while the parents are at work. Certain schools offered free bus transportation, but the thought of that made me frantic.  There was no way that I was going to consider bus transportation for my son, who had been getting out of strollers and seat belts since the age of 2 and who likes to run from you. He requires 24-hour one-to-one supervision which was not an available accommodation on a school bus.

Another problem I encountered with his public school education was that I never once met or spoke to his speech or OT therapist, despite my various requests.  Aren't they supposed to be more involved in the process? Why were they never in attendance at Individualized Education Plan (IEP) meetings as they had been when he was in the early intervention program? Besides, not knowing the people that are working with my child is a big deal for any parent.

Another challenge I faced was that the teacher refused to potty train my son despite the fact that it was one of his self-help goals entering the Pre-K ESE program.  They removed the goal during the first year. Come to think of it, he did not meet any of his goals at all during his two years at that school. Perhaps he just wasn't ready or he needed a smaller adult-to-student ratio. The adult-to-student ratio in the classroom was 1:3, but from what I understood, one adult was a part-time paraprofessional who was not there all day long.

Another obstacle was the school's lack of knowledge on how I can access ABA therapy services or on ABA therapy principles itself.  When I asked that behavioral therapy be offered to my son, they said it was not an option at that school.  The supervisor at the State's Agency for Persons with Disabilities had told me that the school is supposed to provide behavioral therapy upon request.  Like these challenges and obstacles there were many more, which I may decide to write about in the future. 

As I had mentioned in a previous post, other parents became my main source for information and referrals: camp programs, ABA Therapy, private schooling, etc. Through another parent I learned of an ABA Therapy provider and how to access these services through my insurance.  Similarly, through other parents, I learned of which private schools in the area were reputable and which ones I should avoid altogether. That is how I came to choose a private school for my son's kindergarten year, significantly funded through Florida's McKay Scholarship Program.

The school I chose had an excellent reputation among parents and teachers alike. They provide an individualized educational program specifically designed to meet my son's needs.  Plus they offer daily P.E. designed to teach these students to play sports independently, without adult assistance.  They offer, on an alternating basis per semester, instruction in martial arts, yoga, art and music. (I'm told my son loves yoga).  All the teachers are trained in ABA therapy principles and techniques and some teachers are even practicing, certified ABA therapists.  The adult-to-student ratio in my son's class is an amazingly low 4:3. But above all, the staff are so nice and respectful, and truly put your child's needs first. My son has learned leaps and bounds in just a few short months. It took just two weeks and the supports from his teachers and therapists to get him potty trained. My son is still nonverbal, and may remain nonverbal, but he is learning and capable of learning so much more, and that means the world to me.

I am currently reading the book, The Mind Tree: A Miraculous Child Breaks The Silence Of Autism, written by Tito Rajarshi Mukhopadhyay, a severely autistic and nearly nonverbal man who amazingly was able to communicate through writing. He described himself as a child feeling more like a spirit looking in from the outside of the world, than a human being. It was through learning at the Psychologist's office, e.g. building blocks, matching colors, etc. that he finally began to feel less like a spirit and more like a human being. He also wrote that it was through learning that he was able to stop fixating on certain haunting thoughts. Certain behaviors that I've observed in my child, he describes of having exhibited himself at similar ages. Needless to say, through this reading I'm gaining a new perspective on my son's thought processing and his capacity to learn. It has also validated for me the importance of ABA therapy and appropriate educational experiences for all children with autism.