Robert De Niro and the Vaxxed Controversy

Hello everyone!

I am so excited for all the press and conversation surrounding the movie Vaxxed.  Jon and I are planning on seeing it in Maine next week.  About a month ago I made a video in response to the media’s uproar when Vaxxed was pulled from the Tribeca Film Festival.  Robert DeNiro didn’t back down – he was forced to pull the movie and he wasn’t happy about it.  He knows the truth and he wants to investigate further. His son has autism and his wife said she saw a change after vaccinations. It gets personal when it happens to YOUR kid.  You can start watching around the 2:00 mark.  No one messes with DeNiro !!

https://www.youtube.com/watch?v=FJ7iPn39i08

 

I’ll post a review of Vaxxed later next week!

Hear This Well

A few years ago I was thrilled to be a part of a movement addressing the role of vaccines in autism.  Parents all over the world submitted short videos discussing how vaccines affected their children in varying degrees.  It began when a CNN correspondent, Elizabeth Cohen, said on air in a condescending tone that “Vaccines are safe,” leaning forward “Autism is not a side effect of vaccines or to say it another way because some people don’t hear this well, vaccines do not cause autism.”  Well as you can imagine, when thousand of parents of vaccine injured children heard this, we felt angry. We are not a weak community, rather, we tend to pick ourselves up after being constantly told we are crazy or what we witnessed with our own eyes didn’t happen.  So, we rallied and told our stories.  Some are hard to hear because they are about healthy children who become terribly sick and at times become non verbal or wheelchair bound in a matter of days following vaccinations.  There are accounts which are less tragic, but still have a profound impact when parents recall traumatic events that lead to their child being changed forever.

When the “Hear This Well” campaign ignited, I was on my way home to New York and I didn’t even think about whether on not I should tell Liam’s story, I knew I had to.  If we aren’t willing to speak up for what we believe in, change can never happen.  As soon as we got home, I went upstairs into our bathroom (which was the only quiet space I could find!) and just spoke from the heart.  I wanted to say more because I felt insulted but we had to make our video 90 seconds or shorter.  How could Elizabeth Cohen flat out say vaccines do not cause autism when I SAW IT HAPPEN?!  I’m irish and italian so getting fired up doesn’t take much for me.  I kept my composure and made my video. Thousands of parents did the same and we were heard. So many of us had the same story.  Our children were born healthy and regressed into autism after vaccinations. We have photographs and videos backing up our stories.

I was lucky to be featured on the website.  I’m the last video in the “mother” category in the orange column.  You can see the video by visiting the Hear this Well webpage.

If you’re not willing to take a risk and speak your truth, who will?  Be the change you want to see in the world.

What’s Really in the DTaP?

I’m trying to get another post written but in the meantime, here is another great one from Levi Quackenboss.

 

I started down a different road this morning, eager to tell you all about how the polysorbate 80 in the DTaP is causing the rising sunflower seed allergy. But along the way I had to stop and look …

Source: What’s Really in the DTaP?

Hope

Five years ago around this time of year, Liam was playing with a car and said “vroom.” I texted Jon as soon as he said it, my fingers couldn’t type fast enough. My husband was working and living in New York while we were in the Boston area and I knew it would be several days until he was home to hopefully witness it himself. This was a huge moment for us because at three years old, Liam was barely speaking. He muttered sounds we came to understand but other than calling us by name, there was not much more than a stray word here or there. I remember that day so clearly because he said a word with purpose. At that moment I knew there was hope.

Hope can be difficult to hold onto at times, no matter what your struggle may be.  As a mother, watching my child struggle to communicate with me was heartbreaking, especially when his frustration escalated to self harm.  It’s common, among those afflicted with autism to self harm.  Liam at times would slap himself in the face over and over and cry.  Other times he would bang his head against a wall, stove, anything that was nearby.  There were long days that seemed to overlap in this cycle.  But over time, and with the help of dedicated therapists, the words came.  We started using PECS cards (Picture Exchange Communication System) along with charts and his language slowly began developing.  The sounds he muttered began to translate into words.  Words turned into phrases, and phrases into sentences.  His frustration lessened and we began to understand his needs.

There have been times during this autism journey that have shaken me to my core and made me doubt myself, decisions I’ve made, and parenting choices past and present.  Times recently, where I haven’t recognized who my son is.  The past two years have been challenging in a different way then when he was a little boy.  Now that the words are here completely, my husband and I are learning what goes through Liam’s mind, his fears and anxieties, and so many other things we never knew.  Most days Liam’s mood changes very quickly.  He can be happy and sweet, laughing with his sisters and playing and the next minute screaming and angry telling us he wants to die.  Small things that a neurotypical person would brush off are monumental trials for him. Changes in routine, is still his biggest trigger.  The way in which you speak to him, the word choices you use with him impact his entire day. I never thought I’d have to hide knives in fear of him hurting himself. Everything we say and do must be planned out. Autism is a mental mind game for family members trying to navigate the paths ahead. What’s he going to be like today? I’m sure being the person going through autism everyday has much greater challenges.  We are all trying to figure this out and plan accordingly but that’s the thing, there can’t be too much planning in our world.  Some days go by smoothly but most days do not.  I can’t plan ahead for the weekend because I just don’t know what emotional state he will be in.  He may be great but he may be in a rage that will make it impossible for me to take him anywhere.

There are also days when he acts like a typical eight year old and his autism seems dormant. He has gotten better in many ways, especially with sensory processing and we can now vacation and be in busy places like the Statue of Liberty or Central Park. Unfortunately, his outings will usually end with severe meltdowns at the end of the day. Finding positive coping strategies to deal with sensory overload has been a real struggle for him.

This too shall pass, I know.  It’s been two years of extreme ups and downs. I’m grateful for the ups because it reminds me of how good it can be. For a period of time my family has peace and I wonder if this is what a typical family experiences on a regular basis.  And the downs are just a reminder of the reality we are in.

I hope he develops real friendships and is asked on a play date without me initiating it.  I hope one day the ups are the new normal and I can remove my armor and breathe.  I hope one day my daughters won’t hide from their brother.  I hope one day, the loving, real Liam emerges and these hard days are a distant memory because he really is a great kid who just wants to be seen.

I hope.

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Video Update

Two years ago I made a video for Autism Action month.  I have a few blog posts in the works but until they’re completed, I thought I’d share the updated video with you guys.  I decided to change some of the words and pictures and stop being so PC about it all.  Vaccines contributed to Liam’s autism 100%.  Was it the only cause?  No. My next post will be about red flags and what to look for BEFORE vaccinating.  You may need to click on the title of this post to view the video from a mobile device.

 

 

 

P.A.N.D.A.S and P.A.N.S. Awareness Day

Today is P.A.N.D.A.S and P.A.N.S. Awareness Day.

For Liam, PANDAS has been one of the toughest things to battle. It begins almost overnight and is a monster to deal with. Liam regresses quickly.  His handwriting is illegible, he becomes enraged constantly, he hears voices, has OCD, and sometimes gets tics.  We are finally at the end of an exasperation period which is the time when symptoms flare up and medication changes are needed to help control symptoms. One of the causes of PANDAS is inflammation and this was the first time I’ve actually treated it with ibuprofen. It has been a godsend for us. Liam went from a (I hate to say this) mean, angry, impulsive child to a happy, well-adjusted one within days of starting it. The only thing we changed in his medication/supplement schedule was adding the ibuprofen along with increasing his Cednifir. It was incredible to see him change so quickly. The only thing we haven’t been able to get a handle on is his motor tics. Recently I took a video of his jumping tics. The video is kind of shaky because I didn’t want him to know I was recording him. This is the first time Liam has been able to talk to me about his tics. He said his brain makes him do it and he can’t stop. I asked him if he wanted to stop and he said yes but he can’t. It broke my heart.

PANDAS can be a devastating disease to battle.  It is also very difficult to diagnose and many physicians aren’t aware of PANDAS or what symptoms to look out for.  As of now, PANDAS can be diagnosed through parent reports and blood work.  We recently ran Liam’s blood work through Moleculera Labs and did the Cunningham Panel, which is a series of five (5) assays. Four of these clinical assays or tests include enzyme-linked immunosorbent assays (ELISAs) to measure antibody titers against four neuronal antigens present in the brain. A fifth assay is used to quantify calcium/calmodulin-dependent protein kinase activity using a neuronal cell line to test for functional signaling antibodies against human neuronal cells. In the case of each analysis, the measured amounts from the assays are compared to normal control values; the normal control values are obtained from non-PANDAS subjects of similar ages using the same assays. Liam’s numbers were off the charts.  It was kind of a relief to know for certain this is what we’re dealing with for sure, but also unfortunate knowing the severity of it.

If you are reading this via email format, please click the title of the post to be directed to the full site to view the videos.

 

Here is some basic information.

P.A.N.D.A.S. is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It is an auto-immune disease which describes a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep infections such as Strep throat and Scarlet Fever.  Liam was exposed to Scarlet Fever several times during his early preschool years which may have been one of the catalysts.

PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections. Liam falls into the PANS category…as of now. All of his testing comes back negative for strep but he meets all the criteria for PANS. Children with the syndrome have the following symptoms:

Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake.

Additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories:

Anxiety
Emotional lability and/or depression, irritability, aggression and/or severely oppositional behaviors
Behavioral (developmental) regression
Deterioration in school performance
Sensory or motor abnormalities
Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency
Tics both vocal and motor

 

If you want to learn more about PANDAS, please visit:

http://pandasnetwork.org

Here is a link to last year’s post!

https://mybeautifulsurprise.wordpress.com/2013/10/10/pandaspans-awareness-day/

Cunningham Panel via Moleculera Labs

http://www.moleculera.com