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.

Friday, March 16, 2012

Article "The Life & Death of a Medical Pioneer" by Dr. James Biddle

I absolutely love this article written by Dr. James Biddle.  It was actually published in the Celtic Sea Salt Newsletter - Spring 2005.  It goes like this:

"On August 13, 1865, 47-year-old Dr. Ignaz Semmelweis died of what can only be described as a horrible, lonely death.  Most of his colleagues in medicine declined to attend his funeral, as did his wife and children.  What was it that this highly educated, compassionate man had done to brand him a lunatic and cost him his livelihood, his professional reputation, and even his life?

His struggle began when, on his 28th birthday, he became an assistant to Dr. Johannes Klein, the head of the Viennese General Hospital's maternity clinic.  Semmelweis, who held a medical degree from the University of Vienna,  as well as a master's degree in midwifery, was appalled at the mortality rate in the clinic.  At one point in the clinic's shameful history, 11 of 12 maternity patients perished from what was then called "child bed fever". Unsatisfied with any of the current explanations for the cause of child bed fever, Semmelweis began investigating the deadly disease on his own.  His research brought him to the conclusion that the disease was caused primarily by decaying particles of flesh carried on the hands of the physicians attending the doomed patients.  In those days, it was standard procedure for a  doctor to go directly from the dissection of a cadaver to an examination of a live patient.  Semmelweis developed a chloride of lime solution and insisted that the physicians in his section wash with it thoroughly before working on a live patient.  The mortality rate in his section dropped to almost zero.

Rather than embracing Semmelweis' solution, many doctors actively tried to discredit him.  One prominent physician published a condemnation of chlorine washing arguing that the amount of infective material around a fingernail would not possibly  be enough to kill a person.  Even though his findings were grossly misinterpreted by the medical establishment and rejected by many prominent physicians, Semmelweis continued to achieve dramatic success in surgical procedures considered extremely dangerous by even the most skilled of his contemporaries.

In 1856, the editor of a Viennese medical journal added the following words to the end of an otherwise favorable report on chlorine washing by one of Semmelweis's assistants: "We believe that this chlorine washing theory has long outlived its usefulness.  It is time we are no longer to be deceived by this theory." Eventually, embittered by his rejections and full of despair over the lives lost to child bed fever, Semmelweis began to deteriorate.  He started drinking heavily and spending time in the company of prostitutes.  He published angry open letters denouncing prominent obstetricians as irresponsible murderers.

An embarrassment to his colleagues and his family, Semmelweis was lured by a friend to the insane asylum and held there against his will.  When he discovered that he was being committed to the asylum he attempted to escape, got in a fight with the guards, and received the beating from which he would die two weeks later.  Ironically, the disease that killed him - blood poisoning - was one of the maladies that had ended so many lives in the Viennese maternity ward where his struggles had begun.

As disturbing as the Semmelweis story is, the appalling truth is that on a fundamental level little has changed for the better in the medical establishment.  Certainly, surgical hygiene has improved greatly and the technology of medicine has developed at an astonishing rate.  But what about the attitude of medicine? What about our objectivity and our ability to embrace new ideas? Are physicians today any more willing to admit error than they were in the days of Ignaz Semmelweis?"

I connected and felt confirmed as I read this article back in 2005.  Sadly, it's 2012 and the medical community continues to deny any involvement in this rising epidemic of Autism and learning disabilities that is plaguing our generation.  The constant attempt to "control" people through hopeless, devastating diagnosis's is heart wrenching.  How different are many of the doctors  of today from the egotistical doctors mentioned above?  Dr. Semmelweis was ahead of his time.  His discovery obviously intimidated and angered the "smarter", more seasoned physicians he crossed paths with.

Today, we see this in the Autism community.  Many "Semmelweis" physicians are highly educated; many unfortunately are the parents of an affected child.  They tirelessly work to show and prove that these children given this horrible life sentence can be cured.  In doing this, they also suffer the same criticism from many conventional doctors who deny the recoveries that take place daily.  Why do we give conventional medicine so much power?  In reality this is quite puzzling since they really don't have any answers for us with this epidemic, but for some reason they are given "expert" titles.  It makes me wonder ------ was it just ego that angered and mobilized the doctors against Dr. Semmelweis, or did our modern day greed somehow rear it's ugly head for them too?

I have also said that 50 years from now they just may look back at this generation and shake their heads, just as we do in response to the above article.  In today's world, surgical hygiene is a "no brainer"- is this what generations ahead will think about us injecting around 26 or so virus' (chemicals and all) into our bodies?  What will the mental illness statistics be then?

Thursday, March 15, 2012

She is starting to babble!!!!!

We are at about 10 weeks on the diet and this morning Olivia was actually babbling!!  Thank You Lord!  She sounded just like a little infant.  Ma......Me.......Bo.......I..... and on and on!  I haven't heard recognizable sounds from her since 2006!  More good news - she has now started gaining weight.  She now weighs 68 pounds.  This is huge since she hasn't weighed over 62 pounds since 2008.

I know the diet is working.  She's starting to be vocal, she is gaining weight, the color in her skin is slowly returning and most importantly her seizures are going DOWN!!!  Her teacher and I just realized that the last seizure she had at school was February 13th!  Amazingly impressive considering she was having them daily in December.

Tuesday, March 13, 2012

Beth Moore JAMES study letter to Coreene, Laura & Melinda

Oh how I can relate to this study ( JAMES - by Beth Moore) - especially the portion on faith perfected.

Foolish man! Are you willing to learn that faith without works is useless? Wasn't Abraham our father justified by works when he offered Isaac his son on the altar? You see that faith was active together with his works, and by works, faith was perfected. So the Scripture was fulfilled that says, Abraham believed God, and it was credited to him for righteousness, and he was called God's friend. You see that a man is justified by works and not by faith alone. And in the same way, wasn't Rahab the prostitute also justified by works when she received the messengers and sent them out by a different route? For just as the body without the spirit is dead, so also faith without works is dead.
James 2:20-26 (HCSB)

Faith without works is useless.

I can relate to her observation that anyone who is unwilling to learn is an empty headed fool.  She, of course is referring to learning in our spiritual life, whereas I broadened the definition while reading the study material and have applied it to my experience with Olivia. I had to be willing to learn in both the spiritual and physical aspects of her tragedy.  Spiritually I was extremely immature and with Olivia not responding to the treatments outlined by the medical community it was either learn or accept.... and I couldn't accept.  Beth is spot on when she says that "our human tendency is to figure out quickly what we believe.  Then, from that point forward, stick to materials that affirm our early-determined belief system".  Isn't that the medical communities motto? I believe most people may think like this until they are pushed to reevaluate. So many have a belief that the medical community has all the answers to what ails us - I know I did.  But then they uttered those words, "Well, there isn't anything else we can do for your daughter." These words immediately ignited the desire to go outside "the box" and learn what others in the alternative community were saying/doing.

During this study it dawned on me that while I was learning, developing and perfecting my faith in God, as well as in myself, I needed to finally let go and be free of an opinion I have had about myself since early adulthood.  This opinion had been rooted in my consciousness, all from a statement said by my loving mother.  Of course she probably doesn't remember saying it, and for sure never intended it to effect me as much as it has. I have learned throughout the years that the enemy is so skilled at exaggerating, reminding and using words of loved ones against ourselves. When looking into furthering my education with a law degree, and being somewhat insecure about if I could do it, I reached out to my mom, who responded to this inquiry with , "Do you really think you could do that"?  This notion that family members never see the potential in fellow family members is not new - consider James earlier summation of his brother Jesus.  Also consider that Jesus was unable to perform his works in his hometown of Nazareth. Family just doesn't see it. So, as I embarked on learning about what happened to Olivia that question always reared it's ugly head.  "Do you really think you could do that?" In a nut shell, it haunted me, but I still did my part. Believing and learning what went wrong.  I am so thankful for this epiphany!  So long to what could be the root of my insecurity - in Jesus' name!!

In my heart I have always gone back to the "why me?" But now I can say ,"Why not me?" I remember when it first happened to Olivia I did not want to be the mother of a disabled child.  The very thought of having to "put up with" the extra work that was associated with the job was completely harrowing in nature - and believe me I was no hero.  Marty's step-father tried to "shake" it in to me one day when he grabbed hold of my shoulders and shook me, saying "You have to accept that you have a disable child", very sternly.  I looked him straight in the eyes, pulled my hands up to throw his hands off my shoulders and said, "I will NEVER accept it!" and walked out the door. I know now that he was very frustrated by this interruption in our lives and just wanted me to accept it so things could move on.

As Beth introduced us to James 2:21-25 and talked about how James recognizes and notes two Old Testament figures who's faith was perfected by works.

I always questioned why I received such an assignment since I never really "relied" on God until this happened with Olivia.  In my opinion there were so many other people who would have been better qualified. I mean, I am kind of just an average joe - think of my name - Kelly Johnson.  I am sure there are thousands of Kelly Johnson's just in the Minneapolis area alone.  To add to this "averageness", was a inherited feeling of fear in everything I did, and do.  Thinking the worst, even before it happened was my modus operandi! Couple that way off thinking with a tragedy like Olivia's and it should have spelled disaster. But that was not part of the "plan".  Because the "plan" included that I would finally run to and submit myself to God. I was amazed to learn that Rahab, the prostitute who chose to use her faith with the assignment that was only hers, was named in what Beth referred to as the Hebrews 11 Hall of Faith!

This study is so timely for my squeamish self confidence.  I loved learning the little bit about Rahab.  I am showing my bible ignorance here!  This is just what God does for me.  He brings it back to a story about a woman that he used.  Not because she was a great female scholar, or even someone who was following his laws in the beginning - she was probably just an average joe who fell into the prostitution profession due to some hardship.  But as Beth said, "God still called her to faith."  I loved, loved, loved what Beth went on to say:

"God can change what people do.  He can change behavioral patterns that have been in play for decades.  he can change what we do to cope, to find comfort, to survive conflict, to count.  Like me, Rahab had done a same old thing for years.....and then she did something new. She believed God and acted on it."

And that is what I am doing.....I am simply believing God and  acting on it. God knows what will become of this story.

I feel as though Beth was really giving me a warning.  Here I am, poised to finally put my knowledge and experience on paper - to tell the world, and she includes a section on people who are called to teach.  I believe she was really talking about people who will be doing bible studies, but in my life I think it means teaching what I have learned about kids/people with extreme mental illnesses.  As usual, timely information as I get my blog ready for public view.  She warns us about 1) the temptation to teach more than we know, 2) the capacity to mislead, 3)the temptation to use the platform for personal agendas or opinions.  I really don't look at me sharing my story as teaching, but these rules still apply.  I was completely convicted with her final statement as she quoted Romans 12:7 "Let him teach".  To shrink back is disobedience.

Her discussion on James 3:10 was also enlightening to me.  It reads "Praising and cursing come out of the same mouth. My brothers, these things should not be this way".  Beth shows us that we have a choice...the tongue can bring comfort and courage, or it can bring destruction and deafness.  I want to illuminate comfort and courage in my writings. Especially for the young mom who recently lost the soul of her little babe.  I can relate so well to being left with a living, breathing shell that is their physical body.  Checked out.  Gone.

As I moved into Day Five of Week Four I am surprised at just how much of my past, and/or the beginning of this journey has been brought back to my attention.

She talks about bitter envy (or jealousy).  God  is so gracious in that He really shows me just how far I have come in so many area's.  Jealousy used to rule my thoughts after Olivia 'went away" from us.  I remember I was so angry and jealous of anyone that just so happened had a little girl.....especially the same age as Olivia.  I soon began distancing myself from anyone with a little girl.  It would eat me alive.  So, as I learned from Beth that jealousy takes root in insecurity it really made sense to me.

 I love how she says that "Wisdom often knows what to do, what is right, or what is awry.  Understanding often knows why."  Throughout the past 11 years I looked and prayed for wisdom.  I read anything I could about vaccine injured children, what helps, what doesn't.  But until that constant question of "why" was answered I still found my self confused with the "wisdom" of it all.  How does a perfectly normal child become unresponsive, unable to use their voice and begin to fixate on objects in motion?  It is accepted too easily in the medical community.  I often learned and then tried things with Olivia.....diets....supplements and the wisdom just further confused the understanding.  The damaged gut wall.  That is where it began with Olivia, and that is where the understanding ultimately led to a certain end, if you will.  It was also the end of a lack of confidence in the wisdom that I was accumulating throughout the years. In my case it was there all the time.  As I read information about a damaged or "leaky" gut, I just assumed that it must have been healed because of all the supplements I had given her.  I was grossly off target and really didn't understand it until I read the Gut and Psychology Syndrome Book.

This study has certainly dug up some old feelings.  I could relate to the section regarding James 2:16. 'and one of you says to them, "Go in peace, keep warm and eat well, but you do not give them what the body needs, what good is it?" Empty blessings. Beth continues.......They don't have anything, yet we send them off speaking empty blessings.  Oh what a rush of validation swept over me when Beth explained this section. I mean, this kind of treatment happened to me over and over.  People, friends, family would listen to me talk about Olivia for oh so long and then the subject was changed to real life, but my heart was still broken. I could not move on to the next topic of life because it no longer included me. My life had stopped.  Year after year the uncertainty of Olivia's life grew more and more uncertain as her health continued to decline.  In our case, Olivia's chronic worsening condition failed to be the subject at hand in any conversation and the expectation that our lives were "normal" grew year after year.  I think that people just assumed that we had moved on...that we had accepted the drastic change in our lives and we were no longer affected.  This assumption was far from the truth.  We were submerged in a life that was depressing. Period. And who really wanted to know about it? No one. So.....Beth referring to people saying "have a good day ---- blessings to you", in that empty sort of way really hit home for me.

God is so good to me.  This study is really causing me to look back at those old hurts, deal with them and move on.  I know now that many people do not know what to say, and some choose to say words that are harsh because they want you to work through your troubles so they can have the old friend, son, daughter, brother. sister, back.  But what they fail to realize is that the breaking of your heart needs that "dignity of notice" that Beth finished up with.  Instead of people telling me that it must be "God's plan", or "her destiny", or even better yet "just accept you have a handicapped child"; how wonderful if could have been for them to simply say "THIS SUCKS", "Let me pray for her healing", or "I'm sorry this has happened".  You three made this so much better for me. I am forever grateful that you listened, let me cry and talk (non stop ;) ) when we met on those awesome Thursday's at 1:00! I am grateful that you didn't try and "talk me out" of the faith that was developing - even if your brain tried to coax your heart differently.  As I look back to that time, this grace was a requirement for me to make it out of that pit I was in.  There is a reason that I would literally "HOLD ON" until Thursday at 1:00!!  God equipped each of you masterfully to deal with this crazy mom and her sick kid!

Lauren & Her Amazing Godmothers!



Sunday, March 4, 2012

Ear Infections & Antibiotics - The road to becoming a GAPS patient

My little one Lauren was diagnosed today with an ear infection.  Her first one and she is 6 years old! Why am I making it out to be such a big deal? Because in her 6 years she has only had one!  Olivia, on the other hand, started having ear infections at 8 weeks old.  As a tiny baby, she was already entering the world of a GAPS patient. Dr. McBride has a whole chapter in her book about ear infections, or ear glue, as she likes to refer to them as.

I remember when Olivia started getting ear infections one after another, after another.  I always knew when she had one because she could not (would not) lay down for bed, or she would wake up in the middle of the night screaming.  As parents of kids with ear troubles know, the pain would always increase when in a horizontal position.  My mom would say, "What exactly is an ear infection?" My mom had six children who never experienced that sort of ear pain.  Dr. McBride attempts to answer the question, "Why do we have this ear infection epidemic?"

As she explained the structure of the ear and how ear infections develop it really made sense why Olivia struggled with them as a baby/toddler.  She further explains:

"The mouth, nose, throat, Eustachian tubes and middle ear of a newborn baby are sterile.  Fairly soon after birth, mouth, nose and throat get populated by a varied mixture of microbes, coming from the environment, mum, dad and anybody else who is in contact with the child.  Just as it happens with the gut, due to various factors which we have discussed, many children develop abnormal flora in that area.  This will do two things. First, the epithelium of the Eustachian tubes will start producing too much mucus in order to protect and clean itself.  Second, the tube tonsils will be in a chronic state of inflammation, blocking the entrance into the tubes and not allowing the mucus to drain out.  Fairly quickly the middle ear fills up with mucus.  This situation is called glue ear.  Mucus will not allow appropriate passage of sound through the middle ear, impairing the child's hearing and hence development.  A lot of children with glue ear do not become autistic, for example, but their general learning abilities suffer.  Speech delay is very common.  The mucus which fills their middle ear would provide a good growing environment for any infection which may come along from the back of the nose through the Eustachian tube.  When that happens the child gets the typical symptoms of ear infection - pain and fever, when antibiotics are usually prescribed.  Antibiotics clear away the infectious agent, but do not remove the glue ear.  In fact, in the long run, they make the situation worse by altering the bacterial flora in the nose and throat even further.  So, with the middle ear still filled with mucus, a good medium for growing bacteria, predictably the ear infection happens again and fairly soon."  Which is exactly what happened with Olivia.  She would get an ear infection, be put on antibiotics for 10-14 days only to repeat the cycle one week later.

We were living at my mom's house when Olivia's seizures started.  I clearly remember driving up to my mom's house and seeing Olivia in the large picture window.  I remember thinking to myself - "What shirt is she wearing?"  This question may seem weird, but as I looked at her it appeared as though she had a white shirt on with polka dots  on one whole side of the shirt, but not the other (sleeves and all).  As I entered the house and she ran to give me a hug, I realized that the shirt was a basic white shirt, the "dots" that fueled the question in my mind were actually blood drops from her ear.  Her right ear was so badly infected so often, that many times the infection would cause her ear to bleed continuously.  My poor little baby!

Reading Dr. McBride's chapter on ear infections was confirming, especially when she talked about a contributing factor to constant ear infections - ALLERGY TO MILK.  Approximately 9 months after this incident I took Olivia off milk and she hasn't had an ear infection since.  But, unfortunately, the resulting damage from the antibiotics had in a sense sealed her fate.

Dr. McBride further explains the damage done by antibiotics:

"A prescription of antibiotics.  It is the routine response of the medical profession pretty much everywhere
in the Western world.  We have discussed in detail what antibiotics do to the bodily flora (in the gut, on the skin, on all mucous membranes, including the nose, throat and ears).  Though the course of antibiotics will clear that particular ear infection, it will also lay the ground for the next one to come.  Apart from destroying the beneficial bacteria, antibiotics are usually given to small children in a syrup, which provides concentrated amounts of sugars and starches to encourage growth of pathogenic microbes in the throat, many of which are resistant to the antibiotic in that syrup.  As a result these pathogens start growing, even while the antibiotic is being administered.  "

How I wish I knew this then!!

Thursday, March 1, 2012

What was broken now made whole

I can't believe that Olivia has only been on the GAPS diet for 8 weeks.........it feels like forever.  These past two months seem like a blur of intense situation after intense situation.  Sadly, it is almost comical.  After one situation, someone close to me remarked how "resilient" I am. How calm and strong I seem to be. When I tell him, "it really is not me, it's God," he gets all mad, telling me that God can't do that. I know better though. I do not know or cannot imagine a mother who is able to watch her child suffer so......without God.  I believe it would create a very sick soul. So thankful to have Him.

I guess the years of escaping to my car, sometimes in the middle of the night,  to listen to the worship songs has ingrained so many words of truth on my heart.  When my friend was telling me what God can and can't do, it made me think of Lauren in the backseat of my car belting out "Keep me here, Keep me here, there's nowhere else I want to be." I am always amazed at how well she picks up and remembers the lyrics to song after song.  Over the years, she has fallen asleep to these songs blaring in her ears.  For some reason I needed them loud.  This Meredith Andrews song always brings me back to that Peace that many long for and cannot find. There always seems to be one set of lyrics within a song that speak to me, and in this one my heart leaps as I sing, "In your nearness there is healing -  What was broken now made whole - Restoration in its fullness - Lasting hope for all who come."  
Draw me Nearer - Meredith Andrews