More on seizures. It was an injury - not a genetic weakness.

injury /in·ju·ry/ (in´jer-e) wound or trauma; harm or hurt; usually applied to damage inflicted on the body by an external force.

I know what you are thinking..... How can seizures be a result of a damaged gut?

Abnormal gut flora, is present in anyone with digestive problems.  It starts out small, as many things do.  Sweet and starchy food feed pathogenic microbes, which in turn allows them to grow in number and damage the gut lining.  As I have learned, this damage is even escalated with antibiotic use.  Think Candida on steroids! Olivia had monthly ear infections which were treated with monthly doses of antibiotics.  In our modern day society (especially in the late 90's), ear infections = antibiotics. Antibiotics devastate the beneficial bacteria we all have in our bodies and it is not limited to our gut.  They change bacteria, viruses and fungi from benign to pathogenic, which allows them to cause disease. As I read Dr. McBride's information on antibiotics, I was shocked to read that they actually damage our immune system, which in turn makes us more vulnerable to infections, thus creating the "vicious cycle" of more antibiotics and more infections. Obviously there is a place for antibiotics, they can be a life saving drug. What about finding out WHY a child is getting ear infections on a monthly basis instead? Genius!

Dr. McBride says:
Proliferating pathogens in the gut start producing large amounts of toxins, which absorb through the damaged gut wall into the bloodstream and get carried to the brain. As the gut function deteriorates, the foods do not get the chance to be digested properly before they absorb through the damaged gut wall.  Once absorbed into the blood, these partially digested foods trigger very complex immune reactions (called food allergy or intolerance) which are capable of initiating seizures.  The combination of toxins and partially digested foods (being dealt with by the immune system) flowing from the gut to the brain, cause the epileptic activity.


This small paragraph does my soul a world of good! As I have mentioned in earlier posts, this is what happened with Olivia !!! At the beginning of this journey, and with the first appointment with an alternative doctor we ran all the tests that were suggested to run.  Allergy tests (IGE & IGG) included.  The results of these tests were good - she was only allergic to mold (IGE), and a couple foods on the (IGG) form. For those of you not familiar with allergy testing - IGE indicates a "true" allergy, which usually results in an immediate reaction.  IGG testing, on the other hand, is not a supported test in most conventional allergy clinics.  IGG is a "delayed" allergy reaction.  This type of allergy has been explained by several doctors as an allergy caused by the dreaded "leaky" or damaged gut (which Dr. McBride refers to in the above paragraph). IGG reactions are not immediate, but delayed, making them almost impossible to detect. Different foods break down at different speeds, causing different toxic reactions depending upon the food and your personal body chemistry.

Dr. McBride talks about one child's downward spiral, which ended with the development of a seizure disorder.  He was a normal kid, who at two was mentally and physically advanced for his age, was bright and well-coordinated. His  digestion was vulnerable - irregular stools and bloating. After he turned two, he began limiting his diet to sweet and starchy foods.  His digestion worsened, stools looked green and smelled of rotten fish. His outward appearance became thin, very pale with dark circles under his eyes.  By three he was lining up toys, becoming distant and became obsessed with things.  Just six months later he became clumsy and hyperactive, continuing to limit what he would eat. Then he started having absence seizures, he would roll his eyes up for a few seconds, then become unresponsive. Shortly thereafter, he had his first grand mal seizure.  Regression in his learning ability and development followed with all kinds of problems from the medication.  He started the GAPS diet, including the Introduction portion and was able to wean off the medications and the seizures reduced down to one or two very mild absences per week.

I love reading stories like this! I felt as though I was reading Olivia's story from the early years. I will never forget when she was going #2 15-20 times per day.  The smell did not smell human.  I know that because I am only giving you bits and pieces of her story at a time it may seem as though I sat back and watched these things develop in my child.  That is far from the truth.  I did what most moms would do.  I took her to my pediatrician (foul diaper in hand), who then referred me to a Pediatric Gastroenterologist.  I will never forget this appointment. Just thinking about it causes tears to well up in my eyes.  "No", he said, very confidently, "your daughter's apparent regression is not caused by these digestive problems." I explained the number of times she went #2 throughout the day, and pleaded with him to look at the contents of the diaper I conveniently had in my bag.  But he refused.  I really don't think he believed me.  I mean, who goes that much? He ordered a basic smear test, which eventually came back saying "conclusively" that everything was normal and told me there was nothing he could do.  Sadly, those were my trusting days, so I believed him.

Well, not surprisingly, one year later we repeated the allergy tests and within that year she had positive IGG tests for almost every single food! Her injured gut, which was first indicated by her foul stools and multiple stools/day, was worsening.  The damage was deep, and the "experts" of the day were blatantly uninformed, usually by choice.  This apparently was not taught when he went to school, therefore it did not exist.

Unfortunately, in Olivia's case the "injury" wasn't just once.  The second injury to her fragile immune system was the MMR vaccination (she is a registered VAERS child).

This song has been repeating itself in my head since I sat down to write this post:

Can't you see everything happens for a reason
There's a time, there's a place for every season
He knows what's best for you
So don't be afraid.

The same God who was with you then is with you now
The same God that led you in, will lead you out
So take all the fear and doubt
Go on and lay them down
The same God, the same God is with you now.

Just keep holding on
Oh keep holding on     (The Same God - Newsong)


That's my cue - I will keep holding on ;)

I don't despise small beginnings - She has gained 10 pounds!!!

Olivia has officially made it to the 70's - weight wise that is!  In the past, she consistently weighed between 62-64 pounds (since 2006).  This apparent stunted growth, or maybe even "failure to thrive" was, at times very frustrating.  Prior to 2006, she had always been in the 50% percentile at well child checks.

She has always had an amazing diet.  Although she was on a gluten free/casein free diet, she had an abundance of gluten free grains, fruits and vegetables, organic meat.  If someone witnessed how much food was going into her, they would usually comment that they wouldn't be able to eat that much in one sitting!

What I didn't realize then, was that it was all going in, and quickly coming out.  She was going #2 all day long.  The damage to her digestive tract was so severe that her body was unable to obtain the nutrients from the quality food she was eating.

I didn't know that you do not have to be thin to have a nutritional deficiency, but it sure does make sense. If an overweight child starts this diet, they will lose weight and gradually show the "masked" nutritional deficiency.

Dr. McBride explains that by following the GAPS nutritional protocol your digestive system starts absorbing foods properly and nourishing you; you will start building dense bones, healthy muscles and other tissues and organs and gaining weight as a result.  This is exactly what is happening with Olivia.  She is much "sturdier", less fragile looking.  Her limbs feel heavier, and her skinny little bird legs are finally looking a wee bit heavier. This is no coincidence!

I remember when she first started the GAPS intro diet, there were many "comments" like "what's with all the soup?"! I am sure people who have never heard of this diet may have questioned my choice of food for my VERY thin little girl.  To an outsider's view, the soup probably didn't look substantial enough for a sickly child. All I can say is looks can be deceiving!  You know when people are shocked when all of a sudden it takes 2, maybe three people to carry this 13 year old after a seizure, when in the past one was sufficient!

I am not being political in the least when I quote President Obama's statement from 2005.

"If you're walking down the right path and you're willing to keep walking, eventually you make progress."


I have walked down many treatment paths with Olivia in this journey ---- the drug path, the supplement path, the homeopathy path, the ABA path.   I know now that they were the wrong paths and that is exactly why I didn't make any progress.  This path, using food as medicine, not only feels right, it is right.  It's  undeniable progress - she was unable to gain weight for years - withing 5 months on the GAPS diet and she's not just a couple pounds heavier - but 10!!! Praise God!!

September 2011

May 2012

"Do not despise these small beginnings, for the Lord rejoices to see the work begin." Zechariah 4:10 

 I googled this verse for more understanding and started reading an entry from J.M. Farro's blog.  He says:

Several years ago, I read a true story about the humble beginnings of one of the most famous composers of all time. It told of how this composer rose to greatness, and ended up touching countless lives, by simply preparing music for the Sunday services at his church each week. At the time that I read this amazing story, I was feeling very discouraged and disheartened in my work for the Lord. Reading about this man's devotion and dedication inspired me and encouraged my heart. I had been laboring in the Lord's name for many years, and had received little recognition or reward. I often asked myself questions like, "Where are the blessings? Where are my rewards?" I eventually discovered that the thing that helped me most was to shift my focus from, "What's in it for me?" to "How can I help others?"

The Bible clearly states that God's people will be richly rewarded for loving and serving Him. But it doesn't say WHEN we will be rewarded, or even how. One reason for this is that God doesn't want us focusing on our rewards, but on doing the work He has assigned us to do while we're on this earth. And He expects us to perform our work faithfully. Jesus said, "He who is faithful in a very little thing is faithful also in much." (Luke 16:10 NASB) Before the Lord entrusts us with big assignments, He tests us in smaller ones. Some people aren't interested in doing seemingly insignificant tasks for God. What they don't realize is that God may never allow them to do great things for Him, unless they are first willing to do humble tasks, and to prove themselves trustworthy.

I really understand this man's discouragement.  I, too, feel as though I have "labored" for 11 long years.  I, too, try so very hard not to ask that question, "Where are the blessings".   So.....In my heart I know this news is representative of the "small beginnings" of a positive impact on Olivia's health and body.  In a sense I see this as a beginning of our entire family's transition out of this deep hole of despair to whatever God has planned for our story.  Olivia's story.  I always felt as though I needed to wait, to let it "play out", if you will, before I sat down and triumphantly wrote out each detail of her healing.  After reading Mr. Farro's enlightened opinion, it reminded me of how much her story may help others.  As I attempt to shift my focus away from "waiting for the healing", documenting our journey has become the focus. Those struggling with a sick child could benefit from the hope and faith filled journey I've been on, even if it doesn't play out the way I want it to. Focusing on and waiting for her healing is probably the reason I hadn't  started writing.  I wanted to make sure she was healed, because for some reason my heart felt as though the only way it could be a book, is if she were healed.  So maybe.....just maybe by stepping out with the faith He so graciously helped me develop, sharing our "raw" story is what I am meant to do for the time being - because reading someone's journey as it happens lends to the emotions that are sometimes forgotten when the moment has passed.

Olivia's Health/Development Condition Statistics - Update

Weight - 72 pounds - she has gained 10 POUNDS !!!!!
Words - 0
Communication ability - pull someone to TV - now she actually sits down and watches the movie (before she used to just walk away and pace -  HUGE CHANGE
Favorite activity - stiming with string
Understanding ability - probably a 1 out of 10 maybe

Is it Genetics?

Big news this month! Scientists believe they found a gene mutation for children with Autism. Click here to read one of the articles on the discovery:

http://www.icare4autism.org/news/2012/04/not-a-breakthrough-but-a-turning-point-researchers-connect-gene-mutation-to-autism-risk/

This has always been a question people ask me ---- does Olivia's condition run in our family?  All I can say is that we have not seen this type of disability in either side of our families.  And although we took her to the U of M and had every available genetic test run on her (which she passed with flying colors), the genetic counselor ended our consultation with the comment, "Well, it's obviously a genetic error, we just haven't identified it scientifically yet." Hmmmmm.....

They didn't have the answers.....again.  Answers that made sense were not available.

I really liked how Dr. Natasha Campbell-McBride answers this, what she says does make sense, especially in Olivia's case:

"Now and then we see articles in various journals reporting that some part of some gene has been found, which may have something to do with autism....... We are assured that scientists are working on it and that the genetic cause of these conditions will be found! Not that it will help the patients or their families, but it will put our minds at rest in that our children were meant to be disabled and there was nothing we could do about it!


In our modern world, genetics is a popular concept.  Almost every health problem is commonly blamed on genetics.  We pollute the water we drink, the food we eat, the air we breathe with industrial and nuclear wastes and when we get ill we blame it all on genetics.  We deplete our soils of minerals and other nutrients and replace them with pesticides, organophosphates, weedkillers and lots of other chemicals, we grow our crops on these soils, we eat these crops, we get ill and blame it all on genetics.  We damage our children's immune systems with vaccinations and antibiotics and blame it all on genetics.  We regularly consume processed foods with virtually no nourishment for the body that are full of chemicals and detrimental to health, and when we get ill we blame it all on genetics. We regularly intoxicate ourselves with alcohol, tobacco and drugs and when we get ill we blame it all on genetics.


We have epidemics of cancer, heart disease, learning disabilities, psychiatric maladies, autoimmune disorders etc etc etc.  These are all conditions which doctors very rarely encountered 100  years ago.  Have our genetics changed so quickly to cause these epidemics? For the last few decades genetic research or molecular biology has received the most research money in the Western world.  A lot of laboratories which used to do basic science have been converted into genetic research.  Billions have been poured into this area in every Western country. So, if every other scientist works in genetics then that is what they know and that is what they are going to think about when it comes to identifying the course of any disease.  Obesity? Don't worry about your eating habits. Just wait, we will find a gene to blame for it!.


As with other modern epidemics, there is a conclusion that there may be a genetic predisposition to the GAPS disorder rather than a genetic cause.  This predisposition can be made of tens or even hundreds of various genes, nobody knows yet how many and in what combinations.  But what we do know is that before any predisposition materializes into a disease it has to have certain environmental conditions.  Diet is a major part of this environmental conditioning.


There is a large body of research showing that maternal diet during pregnancy and the diet of a baby have a major impact on the genetics of that baby.  Apparently, there are many genes in a child which never become active.  For a gene to become operational it has to have certain conditions to express itself. Environment: our diet, lifestyle, pollution, stress, infections, etc. has a profound effect on what happens to the child's health. By changing the environment (diet etc.) we can make sure that whatever genetic predisposition the child may have, it will not develop into a disease.


In conclusion: it is possible that there are some non-specific genetic predispositions to autism, and other GAPS conditions, which quite likely overlap with a predisposition for autoimmune and digestive disorders and some weakness in the blood-brain barrier.  It is very likely that this predisposition is very widespread and that modern environmental factors make it materialize into disease much more often than 100 years ago, when the environment was different.  A century ago people may have had this predisposition just as much, but it did not show itself because the environment for it was not right - the diet was more natural, there was less pollution, less stress, no vaccinations, no antibiotics etc etc.  One hundred years ago the majority of doctors did not see autism in their practice at all.  Today we have a growing epidemic.  Genetics just don't work this way.  This epidemic can only be due to environmental factors: modern diet, lifestyles, vaccinations, drugs and pollution. Rather than dwelling on genetics, which we can do nothing about, I see this conclusion as positive, because there is a lot we can do to change the environment to help our children.  And those who have done so know that it works!"




I love how Dr. McBride dives further into causes of this disorder, separate from genetics.  Family history and learned behavior are things that are passed down from generation to generation.  Abnormal gut flora, which is the cornerstone of this treatment, is passed from mother to child. She explains it with this scenario:




Another familial factor is learned behavior. What children learn from their parents - what to eat, how to cook, what foods to choose from, personal values & priorities.  As Dr. McBride explains:

"Learned behaviours can vary quite dramatically from family to family. This is something being passed through generations without any genetic involvement.  But it is as important as genetics if not more so, because it will alter the gut flora, the pH, the metabolism and the biochemistry of the body.  And if the grandmother, daughter and granddaughter follow the same family behaviour then they will predispose themselves to similar health problems.  For example, imagine a family where rich sugary deserts were always a tradition together with a lot of bread, pies, biscuits and cakes.  This diet will alter the gut flora and promote an overgrowth of pathogenic microbes in the gut, which always has an unbalancing effect on the immune system.  At the same time this a very house-proud family, so there is a lot of cleaning and polishing with domestic chemicals, air fresheners, deodorants, personal care products and perfumes - all highly allergenic and toxic substances and another onslaught on already compromised immune systems.  We did not even come close to genetics here, but already you an see how the family can make us immune-compromised simply through learned behaviours."


How does this not make sense?  I feel as though my generation was the beginning of using processed food.  Casseroles made with pasta and cream of mushroom soup gained popularity for ease and economic reasons.  Thankfully, my mom did not like things from a can (and did not like pasta) so I escaped that sort of "processed food addiction".  Lunch and dinners at our house consisted of the same menu's over and over - meat, vegetable, vegetable, and my mom only had goodies like cakes and brownies for special occasions, never every night.  Boring yes, and at the time I grew tired of the same old thing.  But as I am learning, those meals preserved my immune system quite nicely.  It also confirms to me why Olivia was completely normal at birth until the little shakes started at 16 months.  Monthly doses of antibiotics, in addition to other factors took out her gut flora and set the stage for a very compromised immune system. I remember filling an antibiotic prescription once and the pharmacist said, "This is a pretty hefty dose for that little babe's body, I will call to check the accuracy." This memory makes me shudder. These words should have caused me to question, but I didn't - I trusted. Why did the doctor prescribing all these antibiotics think they were benign to the rest of her little body?

So, this is my answer to the people who have wondered about the genetic component of this tragedy.  I'll never forget the comment an acquaintance said while I was pregnant with Lauren.  She said, "Aren't you worried that your baby will turn out like Olivia?" The old me would have been extremely irritated by such an insensitive comment, but I was at peace.  In no way was I worried, because deep down I knew the truth and I knew that we would make different choices with our unborn daughter  -  choices I wished I would have made for Olivia.  Those choices, which included no vaccinations, have indeed produced a healthy child with a robust immune system.  Her diet has always consisted of low amounts of sugar and processed foods, and lots of fresh organic meat and vegetables and freshly pressed juice.  She may be one of the few six year olds that enjoys salmon, kale chips and kombucha tea!

To those reading this post whose future includes getting pregnant - get healthy yourself first!  There is an entire chapter in the GAPS book on this very subject.  You (and your future bundle of joy) will be thankful!

Close call! Olivia almost hit by a car!

Whew! Close call today.  An appliance repairman was leaving our house through the front door this evening.  As he approached the door, he thought Olivia wanted to go outside.  He opened the door and she took off down the lawn and darted right into the street.  This is what I was told anyway.  I was busy making dinner at the back of the house and did not realize anything was going on until my neighbor burst through the back door saying, "Kelly, your dau" - that's all she got out and I immediately raced past her thinking that Lauren got hit by a car (since Olivia is never outside without supervision).

As I approached the street I saw Olivia in our neighbor's arms and the poor gentleman who almost hit her pulled over and shaking.

I am posting this because although Olivia looks pretty normal (despite the seizure helmet she was wearing), she is not safe without supervision.  I know the service man's heart was in the right place, but she seriously was almost killed because of a gesture that was grossly inappropriate.

I am simply pointing out another anomaly of this autism epidemic.  When I was a kid, I don't remember any "normal looking" kids with such a serious development delay.  Sure, I knew kids with Downs Syndrome and Mental Retardation, but you could tell they were disabled because of their appearance.  Think about it.  In 1990, the autism rate was 4 or 5 in 10,000 -- now it is 1 in 88.

Confirmation I needed today

I have always said that even though Olivia is non verbal, can't follow a simple direction and hasn't showed any interest in anything but a string for years, I know in my heart that she is in there.  Many times I have thought that she is a smart cookie - smart but unable to show it.  A wave of confirmation flooded my soul as I watched this video today.

There is a reason I could never give up.  Someday Olivia's story will be powerful - I just know it.  She is in there........hopefully the steps I am taking will help her come out and talk with us SOON!

Autism Angel - Carly Fleischmann

The problem with medications - Side Effects!!!

It's funny how you don't really think about how a medication may effect you or your family member.  I mean, it seems as though many people think (and we are told) that most side effects are rare.   A close family member of mine has been faced with this very situation.  Her legs started hurting really bad in October 2011.  Trusting the "powers that know" she talked with her orthopedic doctor about the pain.  He ran every test, every scan, including one for bone cancer.  According to her, the pain felt like her thigh muscle was being ripped off her bone.  Every test came back negative/normal.  The orthopedic doctor told her the pain could just go away on its own.  When it didn't, she started looking - started searching for what was happening to her.

She discovered that the side effects of a couple of her prescribed medications could possibly be the cause.  She had been on both meds for years, with what appeared to be no complaints.  First, she went off one and the pain was a little better, but not good enough. Finally she went to her GP doctor and told her about the pain.  Her doctor had a hunch that the pain could be a side effect of Lipitor, a medication she had been on for many years.  So, we did what many people do - we googled it.  We were amazed at the results  -  leg pain inquiries/discussion and support groups were everywhere. Real life  patients writing their real life experiences to the medication. I realize that many professionals (doctor's, lawyer's etc) roll their eyes when they hear of someone researching a problem online.  There may be some bad information out there --- but there also can be a lot of good!

Within 2 weeks of being off, her pain diminished amazingly.  Out on these sites, we learned that for some people it took 6-7 weeks to get rid of the pain.  For some, the pain never really went away.  What a painful lesson - literally.  I was thankful she wanted to get to the bottom of it.  Many would ask for a pain medication - not this stubborn German lady!

This past Monday while I was doing my bible study homework, I couldn't stop thinking --- "What is going on?" --"What am I missing?" "What is it?".  That night,  around 4:00 AM I was laying with an anxiety ridden Olivia, when a thought came to me --- Here I am, researching the side effects of Lipitor for my mom --- but  I had no idea what the side effects were of the medications that Olivia is  currently on. (Singulair, Allegra and Benedryl for her severe allergies.)

We are not strangers to horrific side effects from drugs.  I mean, we were unfortunately privy to "rare" side effects when Olivia was put on Keppra for her seizures.  She was on the Keppra for 5-months and the damage it did during those months was devastating.

The doctor put Olivia on Keppra in May 2008.  Her seizures got a little out of control following the femur fracture she had sustained in April.  I know what you are thinking.....WHAT? ----- My poor little girl.  A month later I noticed a major change in Olivia's personality.  Her once sweet disposition started to change.  At first it was an occasional pinch or an attempt to bite.  As time wore on, the pinching turned into gouging with her fingernails and the hitting became aggressive.  She was having daily rage episodes that lasted upwards of an hour.  By September,  I would have to put her in the car because she was so violent, and was so strong she became a threat to our then 2-year old daughter Lauren.  I could not leave Lauren alone in the same room with her. It wasn't until that October when a County nurse came for her annual visit.  When she saw that Olivia was on the Keppra she asked if I had seen any aggressive behavior that was new.  She said that several of her clients became very hostile on that drug. Confirmation!!  I knew something was up!  I just think you know your kid and when something is wrong.  Jenny McCarthy calls it your "Mommy Instinct".

As I started researching Keppra, I discovered that Olivia was having more side effects than the change in personality.  She had started doing really weird things on a daily basis.  She was hitting her legs and arms a lot with her hands and stomping around the house like she was a soldier (pins & needles in extremities side effect).  She was holding her urine for 9-10 hours which eventually ended with a puddle of urine to clean-up(painful urination side effect).  I remember hearing her fall in our living room.  As I approached her I was thinking, "Where did all that water come from".  As I lifted her little body from the mass amount of liquid, I realized she had slipped and fallen in her own pee.  The pain must have been so hard to bear that she held it until there was no more holding.  She became obsessed with going down our carpeted stairs on her butt, rubbing her back on the top of each stair (lower back pain side effect).  The school questioned where the bruising on her lower back came from.  Within a week of "connecting the dots" on her behavior changes,  she started hitting her head really hard with her hand, which is something she never did before (headache side effect).  By the time we took her off the drug (October, 2008), she was sitting on the floor hitting her head HARD for 4-hours.  These side effects were way worse that the seizures she was having at that time.  In this situation, taking her off the medication was necessary.  She was only on it for 5 months.  In due time, I know in my heart her seizures would have actually gotten worse FROM the Keppra.  This is the path of the medical community.  Start them on a drug, see side effects, put them on another drug for the side effects and so on and so on.  Soon you do not know if it was a real problem of yours or if it was caused by the drug. It needs to be mentioned that all of these side effects went away approximately 1 month after we weaned her down off the Keppra. If you want more information on this commom side effect, simply google "KEPRAGE"

Why is it that I thought the allergy medications she is on are benign?  Why on earth did I not question it? If she had such a hard time with the Keppra, why did I think she could handle Singulair, Allegra & Benadryl?

I started researching the singulair first and immediately felt sick to my stomach.  I never knew that Singulair (an asthma medication) had psychiatric and/or nervous system side effects.  In fact, for some people they were so severe they took their own life.  There have been class action lawsuits against Merck  for people who have suffered severe physical injury or death as a result of a suicide attempt while taking Singulair.

Singulair is a medication approved by the FDA for treatment of asthma and allergy symptoms.  It works by controlling chemicals that are released during allergic reactions which may lead to inflammation, congestion and other allergy symptoms.   These chemicals are called "leukotrienes".  So.....singulair blocks these Leukotrienes.  This is of course a simplified explanation, believe me I am no bio-chemist.

Olivia does not have asthma, but she does have some pretty severe allergies, although none of them produce an anaphylactic response.  Pfeiffer Treatment Center recommended and prescribed Singulair for the inflammation that occurs from an allergic response (which she had many). She was allergic to almost every food in some fashion.

Who really looks at the "Less Common Side Effects"? We are told that these conditions are extremely rare.....
Less common side effects of Singulair - agitation, aggression, hallucination, pins and aggressive behavior, indigestion, pancreatitis, muscle pain, muscle cramps, seizures restlessness, trouble sleeping.

Olivia would look and act dead tired almost all day long.  Many days she would be calm from about 4-8:30pm.  Then, around 8:30-9:00 she would get up from the couch - start stimming, walking around like someone just put a quarter in her.  I would feel her heart and it would be beating hard and fast.  I never really understood why, all of a sudden her disposition would change.  Each night the look of anxiety and agitation would dominate her whole being. The way her night progressed from here was different from night to night.  Sometimes she would be so anxious, almost appearing to be in a panic attack until she would get so worked up she would have a seizure.  Sometimes she would then go to sleep for the rest of the night, other nights the seizure would cause her to dip further into that anxiety ridden state and she would be up pacing the floors until the wee hours of the morning.  Many nights, especially lately, she has either had a night terror and/or a seizure in her sleep.

As I continued researching how other people responded to Singulair, I was shocked at the similarities to Olivia's reaction.  Trouble sleeping, anxiousness, restlessness, night terrors.  I felt thankful that parents of other children affected took the time to share their experiences on-line.  This is definitely one of those times researching the web paid off!

I've had a lot of questions - things that haven't made sense from the beginning of this nightmare.  As this treatment goes along, more and more of these nagging questions are being answered.  Two of these were answered through parents sharing their stories and it really validated what I thought had happened to Olivia.  These two incidences are other side effects of Singulair that are not listed on the package - they are precocious puberty and stunted growth.  I always wondered why Olivia developed pubic hair, seemingly overnight - at 8 1/2. It always seemed way too early.  Also, she pretty much stopped growing at 9.  Prior to the introduction of this drug she was always in the 50% in both height and weight.  Who ever would have imagined such unexplainable side effects - certainly not me.  Why on earth doctors feel comfortable prescribing this medication to children is beyond me. You can't make this stuff up!

Needless to say, I took her off the Singulair today. I am so thankful this information was available for me to consider what this drug was doing to her fragile system.