The Road to Diagnosis: Anthony’s Story

received_825234961033It has been a long and winding road for the Greco family. After numerous diagnoses, their son Anthony finally learned what had been causing his pain and suffering…but getting to this point was not easy. After visiting his local pediatrician in February of 2016, Anthony was originally diagnosed with tension headaches; however it would all turn out to be much more.

The headaches slowly became more persistent and Anthony soon began experiencing additional symptoms, like vomiting and fever. Anthony’s mother Danielle rushed him to their local ER, where a CT scan would show that all was normal…but that night would tell a different story.

“Anthony awoke with pain throughout his body, one-sided paralysis and was unable to speak. Thinking he was having a stroke we called 911 and went back to the ER, where he saw neurology and was diagnosed with a hemiplegic migraine. Various medicines were given that weren’t touching his headaches, helping his vomiting, nor alleviating his new onset of eye pain. We were beside ourselves.”

After undergoing a spinal tap in June, Anthony was diagnosed with meningitis and immediately rushed to Connecticut Children’s Medical Center.

“A whole slew of tests were done and many consultations with many different doctors. Nothing was adding up. All blood tests and cultures were normal. The normal meds given for meningitis weren’t taking it away, but he was feeling better” recalls Danielle. “An MRI was done and showed increased intracranial pressure – a whole lot of fluid buildup on his brain and spinal canal. It was then deemed that the reason he was feeling better was because the spinal tap took away some of the fluid that was pressing on his central nervous system and causing all these issues.”

Anthony was then diagnosed with HaNDL, a rare headache disorder. For the next month, he would have no episodes, until mid-July when all his symptoms would return. “The headaches, vomiting, severe eye pain, paralysis and speech difficulties all came back. He was sent for another spinal tap. Issues alleviated again until a few weeks later, when his episodes and symptoms returned. We again went for another spinal tap, but this time his white blood cell count had sky rocketed.”

Anthony was once again rushed to Connecticut Children’s and it is here the Greco’s would finally discover what had been causing his symptoms all along.

img_20161125_122951“Our Neurologist brought Hematology and Oncology on board. A spinal tap and a cytology of the fluid was done on August 24, 2016. The next day we were informed that Anthony had cancer of his central nervous system. A cancer called B Cell Lymphoblastic Lymphoma…

Anthony has been receiving treatment with the Center for Cancer and Blood Disorders since his diagnosis and we couldn’t be happier with the care he has received. A month into treatment all cancer cells were gone. He unfortunately has to endure a total of 2 1/2 years of chemotherapy to keep the cancer away. Had it not been for the doctors at Connecticut Children’s Medical Center, I really don’t know where we’d be right now. They stopped at nothing to find out what was going on with our son. To them, we are truly grateful.”

Know the Dangers: Furniture Safety

By Luis Rivera, Safe Kids Connecticut, Connecticut Children’s Medical Center

*Video courtesy of Wall Street Journal (YouTube)

We probably all saw the very scary video of a dresser falling over on  two young boys. These boys pulled out the shelves and used the shelves to climb up the dresser. What we all need to understand is that this is predictable behavior for young children. The video can be hard to watch because we know that when this happens, many children are not as lucky as these two boys were.

Each year children are seriously injured and even killed in furniture tip-over events. The young boys in the video were fortunate enough to escape from this potentially deadly situation with just minor injuries.

Children learn by exploring the world around them. As adults we need to understand what in a child’s environment poses a deadly hazard. Children aged five and younger are most at-risk, with most of the injuries that children suffer at home being predictable and preventable.

With furniture like a dresser or a television, parents need to make sure that it will not tip over. Furniture companies will include a way to anchor furniture to the wall. You can also buy furniture anchors or straps from most hardware stores. Other important home safety measures include using safety gates to prevent children from falling down the stairs, and using electrical outlet covers to prevent an electrical shock.

Safe Kids Connecticut wants to encourage parents and caregivers of children five and younger to conduct a safety check of their homes to make sure that their televisions and furniture are safely secured. This will help to ensure the safety of your children in your home. To learn more, visit www.ctsafekids.org.

Nicholas the Brave

Nicholas’s father joins our blog to share his son’s story and help raise awareness of epilepsy.

nicholasThe boy in the picture is my son Nicholas. He is 7 years old and was diagnosed with infantile spasms around 6 months of age. He had 50 to 60+ seizures a day for about 2 1/2 years straight. The doctors tried every possible medication available at the time to control them with no luck. Finally after a tough 3 years and medication, he was seizure free.

That was until 6 months ago when the seizures came back. He was hospitalized and we were told that they have come back in a different form. We were told this could happen but had hoped it wouldn’t.. Everything had been going so well but they kept coming back.

Unfortunately, the seizures have set him back developmentally. He doesn’t eat solid food and his main source of nutrition is Pediasure. He lost the ability to eat solid foods when he was put on the ketogenic diet to stop the seizures. Since then he will not touch food. Communication is also a problem. As I stated, he is about one year old developmentally. His speech is very limited and he does not talk much. He can say mommy and daddy and knows his colors. He is learning but has a long road ahead. He also suffers from cerebral palsy on his right side… doctors don’t know when or how this happened either but it limits his function on his right side.

Throughout all this he smiles every day, loves music, NASCAR, WWE, monster trucks and watching his brother play hockey. We have learned a lot as a family and dealing with this disease. It’s not easy but if Nicholas can smile so can we.

We never know what tomorrow brings and making plans is hard to do, but my intention is to raise so much awareness and let others know that they are not alone. We have been there and are still there. I’m looking forward to sharing Nick’s story and helping others in future. We will not give up.

Help us raise awareness and share Nick’s story!

#StopBullying: What Parents Need to Know

Dr. Robert D. Keder, developmental-behavioral expert at Connecticut Children’s Medical Center shares how to address bullying with your child not just during National Bullying Prevention Month but all year round. #stopbullying 

Sad pupil being bullied by classmates at corridor

What are some signs your child may display at home if he or she is being bullied at school?
Who is at risk?
All children are at risk to be involved in bullying.  We refer to children who are bullied as targets of bullying.  Children who stick out or are perceived as “different” than others are at more risk of being the target of bullying.  Children with special needs are 3-5 five times more at risk for being the target of bullying.  This includes children with ADHD, learning disabilities, medical problems, food allergies, autism, an IEP and/or  a 504 Plan.  Children who are overweight, from families that do not speak English at home, who identify as GLBTQ, and children who are of racial, ethnic, and/or religious minority in group are also at risk.

What to look for. Children who are targets of bullying may have sudden changes in their behavior.  Here are some of the things to look for: grades going down,  sudden changes in friendships, suddenly losing interest in things they like to do, coming home from school upset or wanting to be alone, lower self-esteem, changes in habits like eating or sleeping, changes in mood, feelings of loneliness or sadness, anxiety.  They may suddenly not want to go to school or skip school.  They may have vague complaints of headaches, stomach aches, or other ache/pains.  You should be concerned if your child comes home with unexplainable injuries or lost/destroyed belongings.  Some children may even hurt or injure themselves; if this is the case call your child’s doctor or 211 right away.  For cyberbullying, keep an eye out for children who pull away from technology like their phone or their computer.  If you notice any of these things, talk to your child.

My child is being bullied. How should I speak to him or her about it?
Children usually do not want to talk about bullying.  It is an uncomfortable topic to talk about especially for a child who is being bullied.  Bullying is a traumatic experience.  The best way to handle talking about bullying is to help children understand what it is, that bullying is “not okay,” and to check in with them.  Keeping lines of communication with your child is important.  Checking in with your child every day is important.  Children who feel “connected” to their parents are more likely to ask them for help and to talk about tough decisions.

If you are worried that your child is being bullied here are some strategies that can help.  Start general.  Let them know that how they are feeling is normal.  School in general, especially middle school when bulling can be at its worst, is challenging.  Ask how school is going.  You can then say, “I hear kids get teased sometimes, have you been teased at school? Has anyone been a bully?” Let them know if you are worried and give them permission to talk about it.

How can I best explain what bullying is to my child?
There is a difference between teasing and bullying.  Brother and sisters (and even parents) tease children.  If it is done in a friendly, playful, and mutual way it can be fun.  When teasing becomes unwanted,  mean,  hurtful, and constant it becomes bullying.

In 2014 the Center for Disease Control (CDC) recognized bullying as a public health problem and published a definition of bullying to help understand it better and prevent it.  Bullying has 4 key elements: it is an unwanted aggressive behavior,  it happens between people with a power imbalance, it is repeated or likely to be repeated, and may inflict harm or distress.  For example, bullying is technically not making a mean joke once.  That is still not okay but also not technically bullying.  If someone makes a mean joke every day about someone every day, then it is bullying.

Helping children understand the difference between things like having an argument with someone (not bullying), accidentally bumping into someone (not bullying), and intentionally mean behavior that happens more than once (definitely bullying) is important.  You can also let them know that bullying can happen in 4 different ways:

Verbal bullying This is saying or writing mean things.  It includes things like repeated teasing, name calling, taunting, and threatening.
Physical bullying.  This is when behavior hurt’s a person’s body or belongings.  It includes things like hitting, kicking, spitting, pushing, tripping, and taking or breaking another person’s things.
Relational or Social bullying This form of bullying focus on hurting someone’s relationships or reputation.  This involves things like spreading rumors, telling others to not be friends with a child, leaving someone out on purpose, or publicly embarrassing someone.
Cyberbullying.  This is when any kind of bullying (usually verbal or relational) happens on line.  It can happen on social media (Facebook , Instagram, etc.), text messages, e-mails, and in chat rooms.

If your child is being bullied:
If your child is being bullied, let your school know.  Talk with his or her teacher or counselor.  You can also stop by the main office.  Connecticut state laws require that every school have a way to anonymously report bullying and have a policy with how to treat it.

Need more help?
General resources: https://www.stopbullying.gov/
Connecticut bullying laws: https://www.stopbullying.gov/laws/connecticut.html
Connecticut Parent Advocacy Center: http://www.cpacinc.org/hot-topics/bullying/
Connecticut State Department of Education: http://www.sde.ct.gov/sde/cwp/view.asp?a=2663&q=334608

Still need more help?
Call us and make an appointment.  Dr. Keder is a Developmental-Behavioral Pediatrician who specializes in working with children with special needs and helping children and their families who are involved in bullying.

The Conversation Every Parent Should Have with their Child about Pokémon GO

Children, adolescents and even adults can’t seem to get enough of the new, augmented reality game, Pokemon Go. The phone app has taken over news headlines and swept the nation by storm since launching on July 6. With more than 21 million daily users, chances are that your child has either heard of the game or is already playing it. So, as a parent, what do you need to know about the game and what precautions should your child take when playing it? Our very own, Kevin Borrup, Associate Director of Connecticut Children’s Injury Prevention Center, joins our blog to answer common questions and offer up safety tips on how to catch em’ all.

Pokemon Go App Icon on iPhone

Istanbul, Turkey – July 14, 2016: Macro closeup image of Pokemon Go game app icon among other game icons on an iPhone.

As I was headed to a meeting last week I noticed three men, somewhere in the 30 to 40 year old range, standing together outside the building I was entering. They looked up and said, “Let’s get the next one,” and then they were off through the parking lot. A colleague who was with me asked, “What are they doing?” You guessed it, they were playing Pokemon Go. They were dressed for work, but I’ll give them the benefit of the doubt and assume they were on a coffee break. Over the last week I have been bombarded with Pokemon Go headlines announcing players crashing cars, getting hit by cars, and even one suffering a poisonous snake bite.

We live in a society of increasing distraction and games like Pokemon Go that are based on augmented reality are poised to become an ever increasing part of that distraction. I am sure that Pokemon Go is a fun game and I have heard that it has gotten kids and adults off their computers, out of their houses, and back outside where some players are walking miles in pursuit of Pokemon. That’s a good thing. However, adults and children should be aware of the distraction caused by Pokemon Go and take steps to manage that distraction. Talk to your kids, whatever their ages, about the following three rules.

Rule #1 – No Pokemon Go and driving. Seriously, hand that phone to the passenger and let them help you. In 2014, over 3,000 people died and more than 400,000 were injured in motor vehicle crashes caused by distracted driving. This number is expected to continue to rise. The National Safety Council has just released a statement asking gamers to put their personal safety ahead of their scores, before someone is killed.

Rule #2 – Devices down and heads up, repeat this to yourself until it becomes a silent mantra. People who pursue Pokemon need to understand that if they go near or in a road way, they are at-risk. Do not assume that drivers see you (they definitely cannot see the Pokemon), or that they will avoid you. Put your phone down and look to make sure it’s safe before crossing a road. According to Safe Kids Worldwide, teens make up 50% of all child pedestrian deaths. Distracted walking has already resulted in a 25% increase in pedestrian injuries in this age group.

Rule #3 – Look around you using your eyes, not your phone. There are so many situations of risk where making sure that you know what is happening around could save your life. Don’t walk off a cliff, run into a tree (yes, this has happened), or fall off your boat in search of Pokemon. And, if you are an adult supervising children, put that phone down and pay attention to the kids.

Be smart, put safety first!

Finishing one marathon. Training for another.

Alexa’s first marathon started when she was just three years old and she was diagnosed with a rare and deadly cancer. But with years of aggressive treatment and annual checkups until age 18, Alexa, now age 24, is cancer free and recently took part in the Boston Marathon.

Alexa photo 9-2013_nAlexa’s mom, Kerry, tells the story: “Our family just finished celebrating 21 years since Alexa’s diagnosis, but I remember that time as if it were yesterday. When Alexa was three years old she began having trouble sleeping because of a pain in her side, although there was no bruise or other problem we could see. When the pain continued, we took Alexa to her pediatrician, but he couldn’t find anything either.

“Alexa’s pain didn’t go away, though,” Kerry continued, “and seemed to be increasing, so the doctor told us to take her in for an X-ray first thing in the morning. After the X-ray, we learned there was a spot on Alexa’s lung, and an appointment had been scheduled later that day at another hospital. As we got our things together, I casually mentioned to the ER staff that we were going to stop at McDonalds on the way since Alexa hadn’t eaten all day. When we got to the counter at McDonalds, the person there asked if I was Alexa’s mom. When I said ‘yes’ they told me the hospital had called ahead to warn us not to let Alexa eat as she would need to be sedated for the next procedure.

“We needed to drive out to Manchester Hospital for the MRI, but Alexa didn’t respond well to the sedative and it looked like the MRI would have to be postponed. I just knew there was something seriously wrong though; in my bones I just knew. In the end, the staff re-worked the schedule and fit Alexa in for her MRI later that day. Then we were instructed to return to UConn Health Center. Connecticut Children’s had not yet opened, so this was the beginning of our driving all over the state to see various specialists,” Kerry explained.

“At UConn they were expecting us, so in a short time we found ourselves in a room on the cancer unit. Dr. Altman and four other doctors asked my husband and I to step into the hall where they told us our daughter had cancer. It was very serious and they were considering immediate surgery. By this time it was quite late in the day. And I had a one-year-old at home with my father.”

burrows and altmanWith a deep breath, Kerry continued, “Alexa had a neuroblastoma, located behind her heart and lungs. Typically, these cancers occur near the abdomen and are found in the first 6 months of life. We learned the tumor was quite large and advanced, as it had been growing for Alexa’s entire life. And it was pressing on her nerves (which had caused the side pain). But due to spinal cord involvement, as well as the overall complexity of the case, Dr. Altman decided to consult with colleagues before moving forward with surgery.

“Alexa went through days of tests and specialist consultations as the pain grew worse. The one thing that seemed to help was being in water. There was a huge tub at UConn so I brought in a bathing suit and spent hours playing Barbies or drawing in the tub with Alexa. Because her case was so rare (fewer than 2% of neuroblastoma grow behind the heart), Dr. Altman presented Alexa’s case to a board of specialists in Chicago. All in all, it ended up taking about 10 days to get to the first surgery. The surgery itself took about 11 hours, but we all felt optimistic that it was successful.

“Sometime later though Alexa started tripping and generally losing coordination,” Kerry recalled. “An emergency MRI revealed that her tumor had grown back. And this time the tumor was growing in her spine.”

“All this happened before Connecticut Children’s opened its doors,” Kerry explains, “so Alexa and I, and my one year old, were running all over Connecticut to see specialists, and get tests or X-rays. It was very difficult. But once Connecticut Children’s opened, Alexa’s entire team was able to easily gather for regular updates and strategy sessions. And of course, my husband and I were invited to all of these meetings. It was such a tremendous relief to have everyone in the same place and it helped us better understand what was going on.

Alexa Burrows finishing the 2016 Boston Marathon_n 4“Connecticut Children’s understands children. It sounds so simple, but makes all the difference. Their approach is much more patient and sympathetic to children. It’s an entirely different and better experience for children and their families.”

Taking time out from her marathon training, Alexa recollects, “I don’t remember any of the early stuff – the surgeries or all the testing to get a diagnosis. I continued to have appointments at Connecticut Children’s until I turned 18 though. The doctors wanted to establish that my protocol could be useful to other children with serious cancers like mine. That makes me feel really good.”

“I mostly remember Dr. Altman being gentle and kind,” Alexa recalls, “and also that the nurses were fun and caring. I remember the dinosaur examination table was my favorite and I would fuss if we had to use a different room. I know I’m incredibly lucky to be alive, let alone training for the Boston Marathon. It’s funny – even though I know I was very sick, my memories of Connecticut Children’s are mostly warm and happy.”

“We Have Found a Family Here”

By Veronica R.

rosario blog photo 2Last year my son was diagnosed with Duchenne Muscular Dystrophy. I started my journey taking a leap of faith and moving to Connecticut. Having heard of Connecticut Children’s Medical Center through family members that live near Hartford, it was as they say “a no brainer.” Having this opportunity, I had to take it. Understanding the outcome of his condition, he needed to be able to have a good quality of life and the opportunity to be as independent as possible.

That’s when I decided to move to Connecticut and seek help at Connecticut Children’s Medical Center.

In 2014, I noticed that my son was having some difficulty standing up and going up the stairs. Expressing my concerns to his primary doctor I asked to be referred to a physical therapist. There I was, told that there was a deficiency in his muscles and she referred me to the MDA Clinic. There he was, tested but the results were inconclusive and required further testing. In September of 2016 his diagnosis was confirmed as being Duchenne Muscular Dystrophy. Now he is on track with his medication and therapies. We have found a family here at Connecticut Children’s.

rosario blog photo 1When I first applied they were not accepting new patients at that time, but thanks to their care coordinators, found a way to receive them. Once that happened everything fell into place. His appointments started coming in, one right after the other. These past 9 months have been full of appointments but it is all worth it knowing that my son is receiving the best care possible.

My experience with Connecticut Children’s has been wonderful. Everyone that we have been in contact with has gone up and beyond what I could have expected. When my kids have an appointment they don’t think or feel like they’re going to a hospital.