Tuesday, November 13, 2012

Being asked by a friend to play at their house

When I picked Joey up at school today, he was walking out with Chase, like he does on moat days. They both asked simultaneously if Joey could go to Chase's house on a Saturday to play. This is the 1st time this has ever happened! He's known Chase since Kindergarten, and even though they don't see each other outside of school, Chase has been a good friend to Joey. They have a lot in common, including interests and the fact that their parents divorced when they both turned 2 (I don't think they realize that fact yet). I feel comfortable letting Joey go to Chase's house and that's huge for me. This afternoon, during the Asperger's seminar at SARRC, I thought to myself that I need to do more to give Joey more social opportunities. Maybe I was wrong?

Monday, November 12, 2012

Picking up Bosco's ashes

I picked up Bosco's ashes from PetSmart. They are in a little white box, with the label "Bosco Hogan."

I don't know if Joey realized I picked up Bosco's ashes before he told me he wanted to keep the bathroom door closed because it "reminds me of Bosco." I showed him where I put Bosco's ashes - snuggled up in the brown blanket where Bosco spent his days - and Joe just smiled.

Neurologist 6 month check up

Today was our 6 month check up with Dr. Deocampo. The last time we were in was for a follow up from the EEG (both in May). He would've started weaning Joey off of the Keppra if it weren't for his wife prescribing Focalin for Joey's ADHD-inattention.

Today, Joey weighed in at 53 lbs and is 49 inches tall. BP was normal.

Because there have been no staring spells, he is good for another 6 months and there is no EEG required in May. We are not weaning Joey off Keppra until we try Focalin5 and make sure this new med/dosage doesn't cause breakthrough seizures.

All in all, I felt it was a great visit and a good step in the right direction!

Thursday, November 8, 2012

Spelling words appearing in the right order

Joey has been practicing his spelling words on Thursday mornings with his resource teacher for the last 3 weeks. He always has his spelling and vocabulary test on Thursdays. Well, today, the resource teacher informed me that he got 100% when she tested him orally. This is the 1st time ever!!!!! I am so proud of my Joe!

Tuesday, November 6, 2012

Bye bye Bosco - Part II

After Joey was supposed to go to sleep last night, I found him sitting below the banister where Bosco used to sit, wrapped up in his angry birds blanket. I asked him what he was doing and he came downstairs with tears in his eyes, and said "I liked him and I miss him. But it's a part of life when you're old." I guess he heard the vet say that Bosco was like a 75 year old human and not strong enough to fight anymore.

So much emotion from a child, who for a long time seemed to have none. I'm so proud of him for being able to share that with us.

Monday, November 5, 2012

Bye bye Bosco

Today was a hard day. I had to say goodbye to my fuzzy friend, Boscarelli "Bosco" DeNigris, the very first pet I had in my adult life and the longest pet I've ever had. He lived with me in my apartment, my 1st house, and my current home. He saw me get married twice, and had to put up with a couple of visitors in between. He also saw me become a Mom, and graciously stepped down from the #1 spot when Sir Joe entered the picture.

Bryan felt something was going to happen last night and I guess he was right.

I was getting ready this morning and saw Bosco start to pee and poop in my bedroom, the place where he sleeps. I yelled at him, clapped my hands, even went over to swat at his butt...because I thought he was just doing it to get back at our dog (they've done this back and forth for years). But something was different today. When I went to swat at him, he kind of fell over, as if he was stunned. He scooted under the bed and even though I tried hard to get him out, he refused to budge.

I came home shortly before 1pm, and Bosco was laying under the bench in my bedroom, breathing shallow and laying in a weird position. I put a bowl of his favorite tuna in front of him and he did not budge. I left him alone.

I went back upstairs around 2pm and his head was hidden, his body looked stiff, his tail was puffed out, and some of his hair was standing up. I started to cry as I feared he was dead. I was too afraid to touch him...to touch the little fuzzy kid I referred to as my baby for the longest time.

Bryan came home at 10 to 5 and confirmed my fear: Bosco was dead. I called Pet Smart and we brought him there to be looked at and to plan his cremation.

While we waited, I knelt down beside his crate and began to cry. I cried so much, I could barely see. I had been crying like that on and off since his passing. This was so real and so unknown. And I felt the biggest hole in my heart.

We sat for a long time and then a tech came in. He revealed what Bryan had felt: a large tumor around Bosco's shoulder. How could we have missed that? A doctor came in and drained some liquid from the growth. It was orange and not white, which meant it was more likely a tumor than an abscess.

The tech came back in, took our money and showed us the box that Bosco will come back in.

I took a picture of Bosco, said a prayer, cried some more and rubbed his tail. I was finally ready to say goodbye. But was I really?

Joey fought back tears and dealt with his grief the only way he knows how:  playing video games.

We left PetSmart and I cried the whole way home.

As I entered our house, I heard Joey's little voice quietly say, as he touched my arm, "It's ok...about Bosco." My son consoled me!!!! That is the silver lining to this very gray and dreary day..

Rest in peace, sweet fuzzy Bosco. May you roam safely in God's backyard and know that you were always very loved, even when I didn't always show it. And I know you loved me, every time you sat behind me in my office, while I worked through the night. I love you buddy. And I miss you more than I could ever imagine, more than words can say. I will fall asleep tonight, thinking of all the times you snuggled up with me and drooled on my shoulder. Dr, Marsh used to tell me it was your way of showing me you loved me. You truly were my special pet and I will always love you. Goodbye, friend.

Friday, November 2, 2012

30 Days of Thanks

Instead of doing the "30 Days of Thanks" on FB, I've decided to have Joey tell me what he is thankful for each day and write it down for him to read when he is older. It's funny what comes out of a kid's mouth when their joys are so simple. I love him.

"I am thankful for..."

November 1st:
Mama not making me take a bath before.

November 2nd:
You picking me up after school.


November 3rd:
For Mama coming home. ( I was gone all day at a conference)

November 4th:
For seeing Wreck It Ralph. And getting my (Power Ranger Samurai) BullZooka.

November 5th:
No religion. And being with Mama so much. I love her so much, I just want to cuddle with her and play Curby. And Curby is really fun.

November 6th:

November 7th:

November 8th:

November 9th:
The weekend. Sleeping in late.

Autism and Epilepsy

From Autism Speaks:


Mortality Rate Is Increased in Persons with Autism Who also Have Epilepsy

Autism Speaks and Miami Childrens Hospital examined co-morbidity of autism and epilepsy among brain donations from Autism Speaks Autism Tissue Program and data from the California State Department of Developmental Services to examine differences in mortality rates when both conditions are present
New York, N.Y. (April 15, 2011) – A comprehensive investigation of brain tissue donated to the Autism Speaks Autism Tissue Program (ATP), a postmortem brain tissue donation program, determined that one-third of the brain donors with autism also had epilepsy, and co-morbidity data from the California State Department of Developmental Services revealed a higher than expected rate of mortality in individuals with both autism and epilepsy than for individuals with autism alone. (Find autism and epilepsy resources here.)

“Mortality in Individuals With Autism, With and Without Epilepsy,” published today in the Journal of Child Neurology, reported that 39 percent of the confirmed cases of autism from ATP donations also had a confirmed diagnosis of epilepsy, which is significantly higher than the estimated rate of epilepsy among the general autism population. The study also reported that data from the California State Department of Developmental Services demonstrated a higher than expected rate of mortality in individuals with autism and epilepsy than autism alone. These data are consistent with past reports. The paper concluded that when epilepsy and autism occurred together, the mortality rates increased by more than 800 percent.

“This study highlights the importance of early identification of epilepsy in children with autism and of autism in children with epilepsy,” said Roberto Tuchman, MD, pediatric neurologist at Miami Children's Hospital and member of the Autism Speaks Scientific Advisory Council. “The findings of this study should motivate the autism and epilepsy communities to increase our understanding of the risk factors and common mechanisms that can lead to epilepsy, autism, or both epilepsy and autism. Understanding these early determinants will allow for the development of effective interventions and preventive measures and ultimately better outcomes for children with autism and epilepsy.”

It is well established that epilepsy is a major medical disorder that is often co-morbid with autism in as many as 30 percent of children. As many as one in 20 children diagnosed with autism by age 3 could either already have epilepsy or develop epilepsy later in life. As noted by the ATP more than a decade ago, sudden unexplained death in epilepsy (SUDEP) has been identified as a cause of death in individuals with autism. Higher mortality rates than in the general population have been reported among individuals with autism, however, there is relatively little known about the specific risk factors that account for the reported higher-than-expected rate of mortality in autism.

“Sudden, unexpected or unexplained death in autism is often, but not always related to epilepsy and we need to use caution when interpreting these data,” explained Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D. “These findings are important for understanding risk factors that may contribute to early death in individuals with autism and further underscore the need for more accurate and accessible records on cause of death in this population. Furthermore, state surveillance programs should implement better tracking mechanisms to help us better understand mortality for individuals with autism and co-occurring disorders such as epilepsy. Critical initiatives supported by Autism Speaks brain tissue program will help bring these issues to the fore and provide information our community needs to help prevent early death in persons with autism.”

About Autism
Autism is a complex neurobiological disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

About Autism Speaks
Autism Speaks is North America's largest autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $160 million to research and developing innovative new resources for families. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks has created resources and programs including the Autism Speaks Autism Treatment Network, Autism Speaks' Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2, which Autism Speaks celebrates through its Light it Up Blue initiative. Also, Autism Speaks award-winning “Learn the Signs” campaign with the Ad Council has received over $258 million in donated media. Autism Speaks' family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and a community grant program. Autism Speaks has played a critical role in securing federal legislation to advance the government's response to autism, and has successfully advocated for insurance reform to cover behavioral treatments in 25 states thus far, with bills pending in an additional 11 states. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.

About the Co-Founders
Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and Chairman and CEO of the Palm Beach Civic Association. He served as Vice Chairman of General Electric; and as the Chief Executive Officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, Mission Product, LLC and the New York Presbyterian Hospital. Suzanne Wright is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children's Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine's National Women's Division and The Women of Vision Award from the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 Heroes and Pioneers category, a list of the most influential people in the world, for their commitment to global autism advocacy. They have also received numerous awards such as the first ever Double Helix Award for Corporate Leadership, NYU Child Advocacy Award, Castle Connolly National Health Leadership Award and The American Ireland Fund Humanitarian Award. In May of 2010 they received Honorary Doctor of Humane Letters Degrees from St. John's University in Queens and delivered the commencement address as the first married couple to be bestowed such an honor.

Epilepsy Awareness Month

This month is Epilepsy Awareness Month. Do you know the signs?

This is the type Joey has:


Complex Partial Seizures


First Aid for Complex Partial Seizures

  • Do not restrain the person.
  • Remove dangerous objects from the person's path.
  • Calmly direct the person to sit down and guide him or her from dangerous situations. Use force only in an emergency to protect the person from immediate harm, such as walking in front of an oncoming car.
  • Observe, but do not approach, a person who appears angry or combative.
  • Remain with the person until he or she is fully alert.

"During a complex partial seizure, a person cannot interact normally with other people."

Complex partial seizures affect a larger area of the brain than simple partial seizures and they affect consciousness.

During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn't know what he or she is doing; and cannot remember afterwards what happened during the seizure.

Although someone may appear to be conscious because he or she remains standing with their eyes open and moving about, it will be an altered consciousness—a dreamlike, almost trancelike state.
Often accompanied by movements called automatisms. These may include chewing movements of the mouth, picking at clothes or fumbling.
A person may even be able to speak, but the words are unlikely to make sense and he or she will not be able to respond to others in an appropriate way.

Although complex partial seizures can affect any area of the brain, they often take place in one of the brain's two temporal lobes. Because of this, the condition is sometimes called "temporal lobe epilepsy."

"Psychomotor epilepsy" is another term doctors may use to describe complex partial seizures.

Typically, a complex partial seizure starts with a blank stare and loss of contact with surroundings.

This is often followed by chewing movements with the mouth, picking at or fumbling with clothing, mumbling and performing simple, unorganized movements over and over again.

Sometimes people wander around during complex partial seizures. For example, a person might leave a room, go downstairs and out into the street, completely unaware of what he or she was doing.

In rare cases, a person might try to undress during a seizure, or become very agitated, screaming, running or making flailing movements with his arms or bicycling movements with his legs.

Other complex partial seizures may cause a person to run in apparent fear, or cry out, or repeat the same phrase over and over again.

Actions and movements are typically unorganized, confused and unfocused during a complex partial seizure.

However, if a complex partial seizure suddenly begins while someone is in the middle of a repetitive action—like dealing cards or stirring a cup of coffee—he or she may stare for a moment then continue with the action during the seizure, but in a mechanical, unorganized kind of way.

Safety Issues

Partial seizures take many forms and medical treatment does not always control them. People who live with frequent complex partial seizures may face many challenges. One involves personal safety.

Things like fire, heat, water, heights, certain machinery and sharp objects are all potential hazards when people are unaware of what they're doing and don't feel pain.

However, there may be ways to reduce obvious risks. For example:
  • Using a microwave oven for cooking instead of a gas or electric range;
  • Taking plates to the oven or stove to serve oneself to avoid having to carry pans of hot food or liquid;
  • Using a regular knife for carving, not an electric knife or, if possible, leaving the carving to someone else;
  • Keeping electric mixers and other electric appliances far away from the sink or source of water;
  • Setting the water heater low enough to prevent scalding during a seizure and taking sit down showers if drop attacks are frequent;
  • Making sure open fires have guards and that electric or other space heaters can't be tipped over;
  • Not smoking and not carrying lighted candles or hot ashes from the fireplace through the house;
  • Limiting ironing as much as possible;
  • Padding sharp corners and carpeting floors.

Although some risks can be limited, others are accepted with partial seizures as part of living a normal life.

Public Understanding

Every day, people living with this type of epilepsy go to work, take care of their children, take part in sports, ride buses, cross busy streets, go on escalators, wait for trains and—perhaps most difficult of all—risk having a seizure in front of a public that too often does not understand.

Dealing with the reactions of others may be the biggest challenge of all for people with complex partial seizures. That's because many people find it hard to believe or accept that behavior which looks deliberate may not be.

Lack of public understanding has led to people with complex partial seizures to be unfairly arrested as drunk or disorderly, accused by others of unlawful activity, indecent exposure or drug abuse—all because of actions produced by seizures.

Such actions may even be misdiagnosed as symptoms of mental illness, leading to inappropriate treatment and, in some cases, commitment to an institution.

The Epilepsy Foundation and its network of affiliates are committed to making the public more aware of this type of epilepsy so that painful misunderstandings can be avoided.
Not uncommonly, simple partial or complex partial may spread to involve the entire brain will result in a later phase with generalized convulsions this kind of seizure seizure is called partial with secondary generalization.