Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.

Her story briefly -

At 18-months she developed little "shaking spells" in the middle of the night. Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.The Neurologist called them "Generalized Myoclonic Seizures". In many cases this can be the beginning of a degenerative condition, but month after month Olivia “defied” this inaccurate diagnosis by continuing to develop normally. Several months later, after a medical procedure, the little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared have entered her own little world. The seizures continued to change. They soon became "drop" seizures and would come on with no warning and she would fall or crash into whatever was in front or below her. They continued to worsen into classic tonic clonic seizures that would last anywhere between 40 to 90 seconds.

Complexity was the word often used to describe Olivia's condition. We've done our due diligence.....we tried all the medications, none worked. We tried the supplement route through a well-known clinic in Chicago. We then tried the Specific Carbohydrate Diet (SCD), to which the Gut and Psychology Syndrome (GAPS) diet is developed from. We saw such amazing results from this diet we decided to take her off the many supplements she was taking because we didn't think she needed them. Well, we were wrong, and she crashed. Apparently, the supplements were helping her --- it was not a coincidence. It made sense that to get her back (at least to the place before pulling the supplements away), we should just put her back on the supplements -- but it didn't happen that way. The complexity often used to describe her was now ten fold, any change we made "upset" her fragile hypersensitivity to change and her path became even more confusing and "crooked". The Medicinal Cannabis has finally given us a mechanism to control the extreme Neurological Inflammation racing through her little body -- something every anticonvulsant medication failed to deliver on.

Our beautiful girl

Our beautiful girl

As a parent to a severely autistic child who has daily uncontrolled seizures, the memory of her being "normal" has never been forgotten. The hope of helping, if not stopping her daily suffering has been an uphill journey. Approaching her situation from a diet perspective is not an entirely new idea. Olivia was on a version of the SCD diet in 2005 with some success because I never introduced the homemade yogurt, which is the main healing modality. The main difference between then and now is the knowledge base of Dr. McBride and her ability to share the wealth of information she personally gathered as she cured her own severely autistic child with the SCD diet.

I do respect and am thankful for the excellent emergency practices of the conventional medical institution. Their services have literally saved Olivia's life on numerous occasions. Alternative care has taught me so much about the power of your own immune system, and the tragedy that can follow when the immune system is damaged. Why these two worlds can't work together to shape and protect us all is a shame.

This blog is really about our journey over the last 15 years. Although the focus is Olivia and her recovery, I will also include how this has affected our whole family and how we have dealt with this unexpected interruption in our lives.

Hebrews 11:1 -

Now faith is confidence in what we hope for and assurance about what we do not see.

Have a question or comment for me?

If you have a question or comment for me feel free to leave it under the "comments" section on the bottom of each individual post. If you would like to leave a private comment you can email me at kellynjohnson94@gmail.com.

Wednesday, March 28, 2012

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.

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