Kawasaki Disease

Vaccinations: Changing the Conversation

Photo by itsmejust/iStock / Getty Images

Photo by itsmejust/iStock / Getty Images

When it comes to platforms, I have a few that I will stand on soapboxes and yell about. Most are women and children related because, well duh. We are most passionate about things that we have experienced. I tell Lucas’ Kawasaki Disease story all the time because it promotes awareness and can possibly save another child’s life. As moms that is our jobs, to protect our babies and to nurture them safely into adulthood. And as part of living in a community and society, it’s our responsibility as ADULTS to do everything in our power to protect these kids before they are strong enough to protect themselves. And since we are living in a society where we all use the same shopping carts at Target, fly the same airplanes, go to the same libraries and parks, it is ALL of our responsibility to stop the spread of infectious diseases.

When Lucas had KD at 9 months old, we were lucky that he responded to the IVIG treatment that they gave him and knocked out his KD. Since IVIG is a blood product and is made up of immunoglobulins, it affects how vaccines like the MMR work, meaning that Lucas could not receive his MMR vaccination until he was about 2 years old. When Lucas was 2 ½ we took him to Florida for a vacation, while we were there, he started running a fever and his neck swelled. We took him to the local ER and the diagnosis? MUMPS.

 Luckily it was a mild case…upon returning home and further talks with his pediatrician the thought was that the delayed vaccination may have left him susceptible to the disease, but thankfully because he was vaccinated, the case wasn’t as bad as it could have been.

So let’s look at the facts:

- My son couldn’t get vaccinated on time

- Even delaying the vaccination from the recommended schedule wasn’t enough to stop him from contracting the virus

- The herd mentality did not help us or stop this

- We traveled cross country on an airplane – from LAX to Miami International – and we probably passed the virus onto others, worldwide, unknowingly.

And I felt horrible about it.

Have you ever gotten someone else sick? Your spouse? College roommate? Co-Worker? Yes, you have. We all have. We go to work when we don’t feel 100% but have no reasonable reason to stay home. By lunch, we’ve been hit head on by the flu. Two days later, your colleague in the next cube over is sick. Getting others sick is the nature of society and will not change. But the thought that my child may have passes mumps onto another child, maybe one in a foreign country who doesn’t have access to vaccinations or proper medical care, really concerned me. And then I got angry, because I live in 6th largest city of the biggest super power nation in the world and we should be protected against things like this. Mumps? Really? 

Every case of measles in the United States costs an enormous amount of money to track and contain,” says Dr. Stephen Cochi, a senior immunization advisor at the Centers for Disease Control and Prevention. “More than 60 million visitors travel to the U.S. every year and therefore the chances of costly outbreaks in unvaccinated children and communities are high.
— Measles & Rubella Initiative Blog

Protect the Herd

I talk about my best friend Anne often because to me she is one of the bravest most selfless people I know. She works for NGOs and goes all over the world helping people that desperately need it. As I type this, she in Iraq, by the Syrian border helping refuges – by choice. She spent years in Africa helping… with what? Vaccinations and health education. When I asked Ann her opinion on the vaccination debate she was shocked that this is even a debate. “So many people in other countries are desperate to take anything so easy and effective to help them save their children,”  she told me. “People don’t have a choice to not take care of their community – especially when they have all the means available to them. To assume that other people’s health doesn’t matter, or that they are not affected by your decision, is just selfish.”

Ann spends her life protecting the herd. If the world was full of Ann’s, I wouldn't need to write this post. Choosing to not vaccinate your child because you don’t want to cause them discomfort, or you don’t think they really need to be pumped full of chemicals, or because an ex-playmate told you it gave her kid autism, is selfish. Working from the assumption that 9 out of 10 children can get vaccinated with little to no side effects, when 13% of parents in an area are opting out of vaccinating – that is selfish and, you are putting everyone at risk for your decision.

If we’re going to beat measles, we have to wipe it out early in these large, populous countries.
— -Dr. Robert Kezaala, head of measles activities at UNICEF.

As a side note, in July of 2013,  the Ministry of Health had reports of over 54,000 cases and almost 800 recorded deaths from measles in Africa.

 But, as always, there is the flip side..

 

The right to protect your own child

One of the main debates I hear from mother’s who have chosen not to vaccinate is that they are doing what I am saying – They have made a choice that they have deemed what is best for their children. And, I understand that… to a point.

I have a good friend, Marcy, whose child had a serious, physical, reaction to his vaccinations. Because of this, they opted not to continue to vaccinate their second child when they saw he had the same reaction after his initial vaccinations. This I get. I would never fault another mother for making a decision that protects her children.

“I believe in vaccinating and I am thrilled that advances in medical care have saved millions of lives through vaccination. When my first son was born, I read the research and still thought it was best to follow the advice of my Pediatrician and vaccinate on schedule. When he received his first shots in the hospital, he had a mild fever and vomited. His next round at 2 months of age came with a raging fever, vomiting, and 2 days of appetite loss. The Dr. assured me that this was normal and occurred in 10% of children. He was sensitive, but he would get over it and small price to pay for the protection of the vaccines. This continued with additional side effects including fever, vomiting, diarrhea, appetite loss, inability to sleep, and muscle paralysis. All "normal" and subsided in a few days. By the time he was three, we were at the end of our rope. He was sick ALL THE TIME. We eventually sought the advice of a nutritionist that tested him and determined that his system had been so ravaged by the 25 vaccines he had to date that his intestines were actually perforated and leaking into his body. We revamped his diet, began a regimen of natural supplements to heal his gut and stopped the vaccines and antibiotics. Miraculously, within 2 weeks, he stopped getting sick, stopped having fevers, began to sleep through the night and his symptoms of Autism* (diagnosed at 18months) began getting easier to manage. *For the record, I do not believe vaccinations caused my son's Autism. I do believe, however, that the illness and side effects from the vaccinations exacerbated his symptoms and affected his ability to cope with sensory input.

But  if every parent that chose not to vaccinate had Marcy’s story, I also wouldn’t be writing this post. 

Where Marcy and I may not agree is on the argument of the “heard effect.” Marcy argues that, “That would be nice, but I would never expect another parent to make a decision on their child's vaccines based on the special needs of my kid. I am responsible for that.”

While I understand, and totally give props for accepting her responsibility, I disagree with the statement.

 Marcy is part of my community, part of my system, and since we’ve been friends for almost 20 years now, she’s practically family. And it is my responsibility to help protect her and her family. If her house burned down and she needed a place to stay, I would let them stay in my little townhome. I would temporarily make my kids uncomfortable to help her and her family out. Because I can do something for her that she can’t do for herself.  

That’s community. That’s what we do for each other. We help and protect each other when needed, even if it temporarily makes our lives harder.

No kid should have measles. No kid should have a reaction to vaccinations.

No parent should have to worry about either of these.

 

Marcy’s main point is that there needs to be more research done for a diagnostic test to determine if a child’s system is strong enough to handle vaccinations. A way to tell if your kid is going to be that 10% that has an adverse reaction. And I wholeheartedly agree with her. I advocate for diagnostic tests for Kawasaki Disease so that no parent needs to sit there and wonder if their child has a life threatening illness, and I agree that we need to try to take the “what if” out of vaccinations.

So let’s change the conversation.

Let’s change the conversation from debate on pro-vaccinations or anti-vaccinations to what WE, as a society, can do to make sure vaccinations are safe for all they are given to. Let’s tackle the issue of making sure that everyone is able to safely vaccinate. Let’s demand a scientifically proven and tested system to work with kids that may not be able to get all the vaccinations at one time – if at all. Let’s hold us all accountable for our actions and our choices when it affects our society as a whole.

 If we change the conversation and work together to solve the issue at hand, then we can all relax and let vaccinations do what they are intended to do – keep us all safe.

 

5th Annual Kawasaki Disease Foundation Gala

It's that time of year again. The time where I bring out the horrific photo of my sick baby boy and beg for money and support... And yes, I am going to retell the story. And yes, I hopefully will make you cry... and donate some money... 

 

My baby boy was 9 months old.

Sweet, little Lucas had just celebrated his first Thanksgiving, was starting to pull himself to a standing position and was about to celebrate his first Christmas. One evening, we took him to Balboa Park, to what used to be called "Christmas on the Prado" to see the lights. He was all bundled up and tucked in tight to his stroller when our friend looked down at him and said "Wow, I never realize how red his cute little lips were!" I stared at him, wondering why we had never noticed this before.

Jason and I were only 9 months into this parenting thing. Maybe the baby was cold? Maybe he ate something he shouldn't have? Thoughts raced through our minds. The next day our sweet boy had his very first fever. We called the nurse line and doled out the proper dosage of infant Motrin and gave him a lukewarm bath. Our normally happy baby was crying and sleeping and visibly uncomfortable.

The next day the fever continued on. His lips grew redder and his eyes were a little bloodshot. Monday came with an early visit to our pediatrician. She made note that this looks "something like Kawasaki Disease" - but told us not to worry.. that was a very rare illness. She told me not to Google it and freak myself out. She put him on antibiotics and sent him in for a chest Xray to rule out pneumonia. 

This was before smartphones - with my day spent at doctors and caring for my sick, little baby, I actually didn't Google Kawasaki Disease...but when he was admitted to Rady Children's Hospital the next day, I wish I had.

Kawasaki Disease is the NUMBER ONE CAUSE OF ACQUIRED HEART DISEASE IN CHILDREN. And going on 9 years later, doctors and scientists STILL don't know exactly what causes it. 

This is where I tell you how LUCKY we were that we walked into Rady Children's Hospital and almost right into Dr. Jane Burns, one of the top KD doctors in the country. Why was that so lucky? Because at the time, many pediatricians weren't trained to recognize and treat KD, and far too many parents were losing their kids to this disease. Our doctors diagnosed the disease in time for a successful treatment.

I use the term "at the time" loosely as well. KD's NUMBER ONE challenge is that doctors still don't recognize it in time and most people still haven't heard about it. But thanks to the work that the Kawasaki Disease Foundation has been doing, people are starting to learn about it. Thanks to actress Sarah Chalke for her influence to have the disease featured on Grey's Anatomy and thanks to Gary Busey for his influence, people are beginning to know more about the signs, what to look for and what questions to ask their doctors. 

This year I sat with my little man, now 9 years later, as he once again had vials of blood drawn and hours of EKGs and tests. Once again I felt that tightening of my heart as the doctors reviewed the findings and examined him. Would they find something this year? Could heart damage appear at this point? 

Once again we were lucky.

9 years later the worst illness or injury the kid has had since is his (currently) fractured wrist. And while with all the new changes to our life, I wasn't able to help as much as I would have liked, I am once again reaching out to my friends and family to help support this foundation during it's annual fundraiser. 

Saturday, November 9th is the 5th Annual "To Save a Child's Heart" Kawasaki Disease Foundation Gala.

While the gala is actually sold out this year, I would love to be able to offer a sizeable contribution in Lucas' name.

Can you help? Anything from $5 up will help make a difference to kids and their little hearts world across the county.

This kid, thanks you. 

Please Help Support "Lucas' Heart", A Table at The Kawasaki Disease Foundation Gala

This month, we have much to be thankful for. While some people are using Facebook to post 30 different things they are thankful for this November, I am really thankful for two main things - the health of my children and the love and support of our friends and family.

November and December are hard for me since these two months mark anniversaries of times when I had to worry about the health of my babies. November brings memories of tiny Zoe, being born at 4lbs 15oz and then not gaining weight. December sends me in my downward spiral, recalling when Lucas was in the hospital with Kawasaki Disease. 

And this month, I'm thankful that BOTH of them are healthy, vibrant, smart, hilarious, sweet children. 

Over the past month I've talked a lot about Kawasaki Disease and the 4th Annual "To Save A Child's Heart" Gala. Many of you have offered to help in some form or another, and for you, I'm also thankful.

I know that our budgets are stretched thin this month. I know that you are being asked to donate to many things, but if you have any room, Jason and I would appreciate a little help in honor of Lucas' little heart. 

As I said before, we are lucky when it comes to our KD experience. We had an amazing pediatrician who recognized the symptoms, we walked into an amazing hospital and were practically met at the door by the number one KD doctor in the US. But unfortunately, our situation is not the norm. 

And that's what we are raising money for - the parents and the children who do not have the resources we did at their fingertips. 

I would love to have a table at the gala dedicated to Lucas, his little heart, and any future hearts that may one day be affected by KD. 

Will you help?

I'm hoping to raise $1500 - and any amount you can give is greatly appreciated.