My Addiction

By Cathy Jameson

I have problems. They’re not going away. 

I’m an addict and I’ve been in denial for many years.  I hide behind labels while retreating with internal pain.  I’m trying to change but it’s something beyond my control.  Who am I?  I am a parent of a child who falls on the autism spectrum disorder and I am scared.  I am also tired.  Somehow I am able to remain hopeful.

Several years ago, my son Ronan started to change. If I could rewind his early childhood years, I’d bring myself back to the summer of 2003.  Ronan was seven months old and gorgeous.  He was developing typically.  Ronan lit up a room with his smile. He was chunky, tan, content, normal.   He nursed well, ate even better, played and laughed all the time.  That summer was the last summer I felt things were normal for both of us.  A friend captured Ronan’s beautiful being on black and white film.  It’s those baby pictures I love dearly as they remind me of who this child of mine was and should be. 

The summer of 2003 was spent at the beach with stopovers to friends along the east coast.  We relished the idea of having time off together, of being a typical family, living the good life now and having thoughts of us growing old with our kids.  The only agenda we had was find time to see friends, relax, and watch our daughter Fiona, then 22 months, and Ronan play.   We had new playgrounds to explore, different tastes to discover and the ocean air to breathe in.  It was the perfect chance to watch time go by.  Ronan learned how to roll and get into things like all normal babies do while Fiona found her love of dolls.  We enjoyed two months of vacation and none of us wanted to go home to the regular routine of things. Toward the end of the summer, I slowly started to pack our bags, say our goodbyes and make plans to get back to real life.  I had a list of things to do with one task I wish I’d never completed. 

I’ll never forget the phone call I made just a few days before we left the beach.  I called our local pediatrician to schedule Ronan’s next well-baby visit.  He was nine months old and I clearly remember asking, “He’s due for his next round of shots, right?”  I was a doting mother doing only what I had been told to do:  I had a shot record for each child and had to fill in the boxes.  I remember talking to the nurse, letting our small-town practice know we were on our way home and to please schedule Ronan in the following week so he could catch up on his shots.  As we left the beach, heading south, Ronan was about to leave us mentally and physically. 

Ronan’s health and development started to change, and not for the better. I had no idea what caused these changes but I recognized they were not normal.  I knew the phrase “boys develop later than girls” could only explain a fraction of what I witnessed in my child.  Over the next year, Ronan began to develop gastrointestinal problems, food intolerances, sleeping problems, language delays, gross motor/physical issues just to name a few.  He couldn’t walk, couldn’t talk, had eating problems and started to have behavior issues. He was no longer the happy, contented, play-appropriately-with-toys child I once knew. He was an irritable, slow-to-do-and-learn blob.  Something changed my child and I needed to know what it was.

Back then when it came to the Internet, I knew the simple basics and how to email. I visited only a few websites, none of them medical or health related. Beyond that, I had no interest in technology.  The drive to find out what was wrong with Ronan turned me into a computer nerd.  I had no idea what a search engine could do but I quickly found out how important a site like Google was. I was able to start thinking like a medical student, probing and hypothesizing and later researching every ailment children have.  None of them fit Ronan’s profile.

All the Internet searches I entered came back inconclusive.  Nothing was an exact fit.  Nothing made sense. Nothing helped lessen the amount of time I was glued to the computer, ignoring my children, my husband and my daily activities.  Though I would have denied it then, I became addicted to the Internet—not for trivial reasons, but because increasingly I believed my child’s life depended on it.

Over Ronan’s second year of life, he worsened and my compulsion to find out what was wrong increased even more.  Ronan was diagnosed with seizures, battled chronic constipation and then chronic diarrhea.  He would either sit on the couch moaning or manically crawl around having enough energy for twenty two-year-olds.  Nothing made sense and time was slipping from my hands. 

I stumbled upon a website, was redirected to it from another website and learned how to bookmark it to be able to revisit it later. It had a new phrase that caught my eye and quite possibly fit Ronan’s list of problems. This new phrase made more sense to me. I was actually excited to learn more although it would open a door to unbelievable sorrow.  It was called vaccine injury.

For the next three years I devoured information about vaccine injury as THE explanation that made sense.   I found other parents who believed in it too. We bonded over biomedical treatment and therapy that brought children with vaccine injury to better health.  In those early years of research, I also danced around the autism websites as they too made sense when I thought of Ronan’s issues.  I didn’t like the thought of autism since there were so many negative connotations about it.  But I immersed myself in anything that could help me help my son. I had to find the little boy I lost, the baby who was growing up in a pain-filled body. 

As a toddler, Ronan tried so hard to do simple tasks.  He’d fail miserably over and over again. I felt like I failed along with him as I had to first learn how to help him and then find the time, therapy or money to create the opportunity to reach him and meet his needs. Of course, I went back to the computer to look up anything and everything to help me.

Today, Ronan is a big boy about to turn seven. For me it’s been an amazing path in self-education and I still research nightly. I do feel I have become an expert in knowing which sites to visit, which doctors to believe, which publications to trust. I don’t have to search as hard for answers since more people are coming forward with their stories, their successes and even their own child’s recovery from autism.  I have my doubts still in how Ronan’s story will pan out as he has been a non-responder to several therapies and has a mitochondrial disease too, but I have found some faith along the way.

After working tirelessly reading for at least two hours each night for the last five plus years, plus 20 minutes here and 10 minutes there of quick searches, you’ll see that I’m addicted to all things autism and anything related to vaccines.  This addiction has led to my belonging to several groups that advocate for children on the spectrum. I reach out locally to families like mine.  I write about our journey and share it so other people won’t have to go through the grief and turmoil my own family has gone through.  I advocate for Ronan in ways I never knew a parent would have to for their child.  

I’m addicted to this life and this path even though I don’t really like what led me here.  I embrace this addiction because it gives me power over despair and hope over defeat.
--
Cathy Jameson writes about her son’s journey while juggling the life of her four typical children.  She and her husband have grown stronger and louder in their search for answers.  Their family treasures the small ‘wows’ Ronan shares since those feed the continuing investigation to make life better for his many needs. Cathy runs the Age of Autism FaceBook page.

Comments

[Lisa @ TACA]

Hi, my name is Lisa (echo with me: HI LISA!) I am an obessions autism cause, news and what's best in designing desired outcomes for our kids!

Yup - that would be me to a "T". Won't stop until done or....

[Renee Tag]

oh yeah, trade out the childs name to anthony...my story, my life.

[Rachel L.]

I am so grateful to see this article! Ever since my darling neurotypical son descended into autism within 24 hours of his MMR shot, I have been addicted as well. My own parents and siblings often tell me they are sick of hearing about autism! While I can see that this gets on their nerves, it makes me angry! They should try to walk in my son's shoes for one day, and they I DARE them to gripe. I have 3 other children, my girls are fine, but my youngest son also has very mild PDD-NOS. Thank GOD I stopped his vaccines after what happened to his brother. It saved him from further damage, it is just too bad his brother had to pay the price. He does continue to get better,and is considered high functioning now, but the guilt just eats away at me day after day. I will NEVER stop until he is recovered, and I pray that I see the day that the people responsible are brought to their knees!

[KC]

Texas parent, if you're still having the tics issue and if PANDAS does not prove to be the issue, look into magnesium. (If you haven't already). We got rid of my son's tics when working with a DAN doctor. When they reappeared along with irritability and increased noise sensitivity, I tried to figure out what was different. I had run out of his regular multivitamin and temporarily used one I had from Whole Foods. I compared the two vitamins and the difference - no magnesium. So I left him on that multi and just added Natural Calm and his tics and noise sensitivity went away. He is back on his regular multi but we also give him a teaspoon of Natural Calm in addition.

[Taximom5]

Bensmyson--WOW, what a contrasting picure came to mind after reading your post.

On one side of the picture: your crying mama elephants, trying everything in their power to save the weakest member of the herd.

On the other side of the picture: angry bullies, demanding that the weakest members of their herd be vaccinated, disregarding the devastation and even death that have already occured as a direct result, and all supposedly in the name of "herd immunity."

Looks like the animals are better human beings than some of the human beings.

[Isaacs Grandma]

I am with you. I too have spent the last several years scowering the internet. I have gone from the mainstream media websites that say that there is no connection between vaccine injury and Autism...to the websites that make it clear that there IS certainly a connection.
I have had people think that I am a bit crazy in my thinking, but I find it interesting that those same people keep coming back to debate the obvious.
Keep looking. Don't let anyone get in your way!

[AnaB]

When I see doctors on TV, who don't even treat autism, say parents confuse their child's regressive with vaccines because they happen "around the time autism sets in" I just laugh. They don't get it. When our children are injured by a vaccine it is that cut and dry...they get a shot, get a fever, and are never the same. Its not about "wanting something to blame" as these people like to think. Its about knowing what we saw happen to our children in our own houses. We were there; they weren't. My son never received a single Thimerosal vaccine and yet he still had 2 vaccine injuries (3 if you count getting the Hep B at birth and being Jaundiced within hours).

[jen]

yeah, one day we were talking about what is our passion and my friend said to me without a moments hesitation, "Your passion is autsim." Guilty as charged. Yesterday in Canmore I saw the offending Wired magazine and I stuck them all behind "Hockey News. The Best Jerseys of all Time." Ha Ha. Just took half an hour to email some writer in the Globe and Mail who lumped us all together with 9/11 conspiracy theorists. This issue is important. Children's lives are at stake. I remember one of my University profs questioning my ability to advocate for children ( I was a tad socially anxious at times) and I wish I could see her now. I'd tell her, "Honey, I'm a regular loud mouth now when it comes to kids."

[Cathy R.]

Hi. My name is Cathy and I am an addict...
to knowledge
to truth
to healing
to hope
to our community

Thanks Cathy!

[Judith]

This article and the comments make me cry. I'm glad we have such a wonderful and helpful community, but am so terribly sad that we have to be part of it. How we are treated like "wackos" and poor parents for questioning these "so called experts".
I will always feel guilty about my son's ASD, because I had parents warn me, and yet I chose to vaccinate anyway. Sure, my son is nearly recovered due to early biomedical and ABA interventions, but it is knowing that I allowed this to happen which is what eats at me.
My daughter is the lucky one, who has never had a shot in her life, and who will be the one who will chose to get a shot when she is at the age of consent.

Keep up the good work, A of A! I'm just waiting for Snyderman to have a reaction to the vaccines she advocates for. Now that would be a trip!

[Petra]

Became a fellow addict in April of 2004, when an internet search made me stumble across the work of Dr. Doris Rapp, which was the first piece of information to give me some real answers as to what was happening to my S. From there on I came across the book written by Karyn Seroussi, and the rest is history as they say..

Have been an addict ever since. Not planning on *quiting* anytime soon..

[and honestly? I'd rather be called addicted/obsessed with continuing to look for the missing pieces of my boyos' puzzles than have it referred to as 'my hobby'..]

[Lowell]

I know the feeling well Cathy. Stay on the course spreading awareness. It is an amazing journey, to realize that so much is wrong in our current medical fields, and especially in regard to vaccinations. To realize that parents and all of us have been so mislead about the effectiveness and safety of vaccines; as well as their connection to so much harm. I was aware that the main problem was the greed for pharmaceutical profit, from the start; then researched all I could, and worked from there. This is my website, and where I took it from there. www.lowellsfacts.com

[Cherry Sperlin Misra]

To Jenny and Texas Parent, One thing you have to do is to research all the possible sources of mercury for your kids and get rid of them. There are so many sources . One that is mentioned rather too little is fish. Stop the fish ! Stop the vaccines. Even vaccines that are labelled No Thimerosal, may contain some. Other vaccines have no Thimerosal, but they have Aluminum, which increases the toxicity of mercury.
After eliminating all possible sources of mercury, look into the easier chelation methods - oral, suppository, etc.These methods actively remove mercury. The human body can heal itself, in many cases, but we have to give it a chance. Also, reduce your usage of any product that could be called a "chemical" - cleaning products, pesticides ,paints, for example.

[Talking Head]

Can we all agree that Nancy Snyderman is an ass? Who decided to put her on TV?

[Jewels]

From one addict to another, Cat -- great article. It's the one DOSE of reality that I accept in life today. Knowledge is and always will be the power that drives an "informed" decision. Without it, we, and more importantly our children, are but helpless sitting ducks in a game of Russian Roulette!

Some of us watch the life of our child systematically being ripped away right before our very eyes and then rendered powerless to stop it. Does it happen to every child who receives vaccinations? NO, but the question you must ask yourself BEFORE you vaccinate your child is "Do you feel lucky?" Those of us who "walk the walk," would say it just is absolutely NOT worth the risk.

For us it was the HepB shot that neurologically injured our child. He was born HEALTHY (Apgar of 13), but came home from the hospital vastly different. The only shot he had received was the HePB! New studies are now showing that the HepB is the MOST toxic vaccination given to a newborn. I encourage all to visit: http://www.thinktwice.com/hepB_sho.htm
BEFORE you decide vaccinations are safe!

[Texas Parent]

If you watch the TODAY show clip on PANDAS and see Nanacy Snyderman's response, she calls it "Very, very new."

http://today.msnbc.msn.com/id/32987757/ns/today-today_books/

Yet this condition was formally identified and named in 1998, and noted back in the 1800's.

http://www.psychiatrictimes.com/display/article/10168/57091?verify=0

"The idea that streptococcal infections can precipitate neuropsychiatric disorders in children, including obsessive-compulsive symptoms and tics, has surfaced intermittently for more than 100 years. It was not until 1998 that this notion was fully articulated. In that year, Susan E. Swedo, MD, and her colleagues published their findings on 50 such cases, provided criteria for making the diagnosis, and gave the syndrome the name and acronym that has stuck.

Swedo was a fellow at the Child Psychiatry Branch of the National Institute of Mental Health (NIMH) when she started investigating the relationship between streptococcal infections and obsessive-compulsive disorder (OCD) in children. Still at NIMH but now directing the Division of Pediatric Translational Research and Treatment Development and doing part-time research, Swedo explained that she began the studies that led to the identification of PANDAS because her mentor at the NIMH, Judith Rapaport, MD, was investigating the brain pathology underlying OCD. Swedo found a compelling association between Sydenham chorea, the only neurologic disorder known to be associated with streptococcal infection, and OCD symptoms.

As far back as the late 19th century, William Osler (1849-1919) noted "a certain perseverativeness of behavior" in children with Sydenham chorea.1 Others made similar observations. Swedo and colleagues found a high prevalence of OCD symptoms. Swedo also carried out longitudinal studies of children with OCD. She found that a subgroup of such children had a pattern of abrupt onset of OCD, an episodic course, and exacerbations that often preceded group A b-hemolytic streptococcal (GABHS) infections."

So, which is it Dr. Synderman? Is centuries-old your definition of "very, very new" or eleven years? It's way past the time for our mainstream medical community to play catch up on their homework. Your obligations don't end at med. school graduation.

[Texas Parent]

To Jenny - if you haven't already, you must read up on PANDAS, where OCD and tic disorders are linked to strep. Strep is in the Prevnar vaccine. Although a different strain than is typically associated with PANDAS, my son showed heavy growth of the Prevnar strep four years after receiving all four Prevnar vaccines and had never suffered from a strep throat, yet his strep titres were off the charts. I thought the point of a vax was to help your body fight off infection, not allow for "heavy growth." Anyway, I strongly suggest you have your child swabbed for strep. My son's throat swabs were positive for strep with no symptoms other than the tics. Antibiotics dramatically reduce his symptoms.

http://today.msnbc.msn.com/id/32987757/ns/today-today_books/

http://intramural.nimh.nih.gov/pdn/web.htm

http://serendip.brynmawr.edu/exchange/node/1769

http://today.msnbc.msn.com/id/32987757/ns/today-today_books/

Good luck to you!

[NAK]

I am a 100% addict to autism and to help get the word out that there is hope and help. I call it my last mission on earth and know that God has lead and guided me in the right directions. Its an addiction you can be proud of. God bless you and keep you all.

[Jessica]

I think we should stop referring to vaccines - EVER - as "mandatory" for any reason. They aren't.

The sooner we stop saying things like "mandatory kindergarten vaccines" the sooner the false belief of "no shots no school" will die. My own SIL is a social worker and had no idea that vaccines are not "mandatory" for school.

[Texas Parent]

Two good sources on this. First, read the NAA's commentary on the rebuttal study the CDC recently commissioned to try to dispute the thimerosal link to neurological damage from its own findings published in the Nov. 2003 issue of "Pediatrics", how small the group was, and how the findings within this new study not only contradict the results from the previous study, but contradict its own report. The newer study even goes so far as to suggest mercury exposure IMPROVES neurological functioning. Can't decide whether to laugh or throw up.

http://www.medicalnewstoday.com/articles/83771.php

Here is the report on the Johns Hopkins website that references the three studies linking thimerosal to tics, including this most recent one by the CDC.

http://www.vaccinesafety.edu/cc-thim.htm

More than 1000 children with different thimerosal exposures from the prenatal period until 7 months of age were evaluated by a battery of 42 neurodevelopmental tests at 7-10 years of age. The analyses involved 378 comparisons of outcomes including possible differences of effects on boys vs. girls. Ninety-five percent of the analyses showed no differences in outcomes by thimerosal exposure. Five percent of the comparisons revealed differences in outcomes by thimerosal exposure. Using a cutoff of 5% for statistical significance, these findings would be expected by chance. More findings of slight improvement in scores with increasing thimerosal exposure were found than findings of decreased performance with increasing exposure. The effects in both directions on test performance were quite small. These findings have been interpreted as probably chance occurrences by the authors.

The study did find an increased rate of tic disorders associated with thimerosal. This finding had been observed in two prior studies and will be investigated further.