Sharing our story to raise awareness of Kawasaki's disease

On October 19th, 2011 my 2 year old son, Isaiah, was diagnosed with Kawasaki disease. Life has not been the same ever since. I want to share his story to help raise awareness of this disease. We were fortunate that Isaiah was diagnosed and treated for his illness. However, Isaiah developed multiple aneurysms in his coronary arteries as a result of Kawasaki disease. If left undiagnosed, this disease can result in death.

If I can help even one child by sharing our story, then I will have done right by my son. He is such a brave, strong boy and I know that when he grows older he will be glad that I shared his story.

Friday, April 26, 2013

No such thing as too much information

Since Isaiah's Kawasaki disease journey began, there have been many things I have learned. One lesson that has become a reoccurring theme lately is when it comes to your health, or that of a loved one, there is no such thing as having too much information.

Cardiac MRI

Isaiah had a cardiac MRI done in mid March to further investigate his heart function.  Although he has an echocardiogram done every 3 months, it is my understanding that he will require a more complete diagnostic test at least once a year. Last year he had two cardiac catheterizations done, but our cardiologist decided on a cardiac MRI this year, as it would be able to give us an equally good understanding of the status of Isaiah's heart.  I was thrilled by this news, as the MRI is non-invasive, which would mean no incision to worry about and virtually no recovery time, except from the effects of the anesthetic.

The results of the MRI confirmed what the cardiologists had suspected from last year's cardiac cath: 10 to 20 percent of Isaiah's heart has been damaged due to myocardial infarction (lack of blood).  In addition, the MRI revealed that there is low blood flow to other parts of his heart. Our cardiologist explained that a cardiac cath would need to be done to determine if there are any new clots or narrowings since last year and also check on the development of the collateral arteries that were visible in the last angiogram. Apparently, cardiac MRIs are useful for checking heart function and structure, but are not the best choice for viewing narrowing of the arteries. While our cardiologist decided he needed to gather more information, I realized that I needed to do a better job at educating myself about the medical tests (along with their limitations) and procedures that Isaiah was undergoing. 

Chest pains

We were fortunate enough to get an earlier appointment for Isaiah's cardiac cath due to a cancellation.    When Isaiah began to complain of a pain in his chest six days before the cath, we realized how fortunate we really were.  He did not exhibit any other heart-related symptoms and continued to be very active without any shortness of breath or increased pain. We thought the pain could be due to indigestion or a muscle strain, but it was very hard not to focus on the heart given what we know about Isaiah's condition. He continued to mention the chest pain intermittently, but when asked always answered "yes, it's still hurting" and continued to rate it a 5 on a scale of 1 to 10.  We described different types of pain to him in an attempt to get him to identify which type it was, but it is very difficult for a four year old to differentiate between a stabbing pain and a crushing pain.  To quote Isaiah: "it just hurts." At this point the cardiac cath could not come soon enough. We needed to find out what was really going on and if his chest pains were indeed heart-related. 

Unexpected CT scan

We woke Isaiah up at 6am on a Thursday in order to make it down to the hospital for 7am.  He went through the usual prep of being weighed, measured and having his blood pressure and temperature taken. He had settled into his hospital bed with a video game as we waited for the doctors to come talk to us prior to the procedure. He mentioned that his head was hurting him and suddenly started crying. The pain seemed to worsen.  He was inconsolable and was writhing and rubbing his feet together. Isaiah has a high tolerance for pain, which he has demonstrated many times since the start of this journey, so we were quite concerned. We thought it may be a headache due to the lack of sleep and the fasting. Given Isaiah's history of Kawaski disease and his blood thinning regime the doctors did not take this sudden headache lightly. It was possible that it could be due to bleeding in the brain, either from an aneurysm that had developed during his KD episodes, as inflammation can occur in arteries throughout the body, or from a bump on the head which bled due to his many blood thinning medications. The cardiology team did not feel comfortable moving ahead with the cath until the issue of his headache was sorted out. Neurology came to examine him and decided to send him for a CT scan to investigate further -- more information gathering. During this time we were in a holding pattern with regards to his medications and eating and drinking. The doctors could not give orders to start his heparin line (blood thinner) until after the CT scan. If there was in fact bleeding in his brain, giving Isaiah the heparin would be dangerous. The entire time we were worrying that clots could be forming, as Isaiah had not received his usual shot of enoxaparin (blood thinner) that morning. The CT scan did not show any bleeding or abnormalities in his brain. Neurology came to examine him again and confirmed that there were no issues with his brain. Isaiah's heparin line was finally turned on.  This information gathering exercise allowed the doctors to rule out what was not causing Isaiah's sudden headache, but did not give any definite answers as to what was causing it.  I have come to realize that this is a common practice in the medical world and in life.  Sometimes the best and only course of action is to rule out possibilities in order to get closer to finding the true answer.


Finally, the cardiac cath

The doctors decided to keep Isaiah overnight "for observation" and promised to squeeze him into the schedule for his cardiac cath the following day.  Isaiah finally went in for his cardiac cath close to 1 pm on the Friday.  While we hated that he had to go through yet another procedure, we were anxious for the doctors to get a clearer picture of the status of his arteries.  Little did we know what new information would be discovered and where it would lead us.  When Isaiah's cath was completed, one of the cardiologists came to speak to us regarding the results.  He revealed that a portion of Isaiah's left coronary artery (left marginal artery) had become quite blocked due to scarring as the aneurysms healed.  We knew from last year's cardiac cath that the distal portion of his right coronary artery had a blockage due to a clot, but this issue with his left artery was completely new.  The doctor explained to us that the team would need to discuss Isaiah's case further on Monday, but his initial thoughts were that a bypass would need to be done on his left coronary artery in order to get more blood flowing.  Otherwise, Isaiah's heart would essentially be getting blood from one main coronary artery (circumflex) and whatever collateral arteries exist.  This was definitely not the news we were hoping to receive.

Being in the know

Clearly, it is best that doctors have as much physical and measurable information as possible in order to make the best possible decisions about their patients' health.  Only so much can be garnered from anecdotal information, especially when your young patient is still learning to process what they are feeling and also how to communicate those feelings. I would never discount what a child is feeling or saying they feel, or what a parent observes or feels, but results from diagnostic testing is irreplaceable.  I think the challenge for doctors is knowing what are the correct tests that need to be done and what level of testing is appropriate.  We were relieved that the neurologists took Isaiah's headache seriously, given his medical history and ordered the CT scan,  but they were sure to mention that if he were not a KD kid on blood thinners and walked into the ER with the same headache, they would more than likely release him without any testing.  While we felt sorry for Isaiah as he had to undergo yet another test and another round of anesthetic, we were still glad they intentionally "over-reacted," as they put it.  Given Isaiah's complex medical condition, we need every decision made by his doctors be as informed as possible.  Sometimes the value of physical information outweighs temporary discomfort and safety risks (such as radiation exposure), but it is a balance.  Another KD mom I spoke to struggles with the same issue concerning her very active daughter, who is also on multiple blood thinners due to her aneurysms. She has already had to have one CT scan done on her daughter due to a hard fall where she hit her head, but worries about the risk of repeated radiation exposure, should her daughter require more CT scans in the future.  It is a definitely a challenge to figure out if the risk of taking steps to "knowing" are better than just "not knowing."

The responsibility of seeking out information does not fall on the medical professionals alone.  As parents it is our job to arm ourselves with as much information as possible when it comes to our children's health.  It means paying attention to symptoms and documenting them.  It means doing research prior to visits to the doctor.  It means asking questions and then asking more questions.  While I see huge value in online research, I do realize that looking up something on WebMD does not a doctor make.  However, it is important to go to your doctor with valid research and be able to have an intelligent dialogue with them and be able to ask the right questions to get the answers you are looking for.  My husband continually tells me not to be afraid to ask questions and reminds me that while Isaiah's medical team is great, Isaiah is only one of many patients that they see every week.  It is our job to know his medical information inside and out, because the doctors just do not have the time or capacity to do so.

After every visit to the hospital, I realize that there are still many things I need to research and understand better.  Whether it be a diagnostic test, procedure, measurement, medication or medical term.  My hope is that understanding these things will allow me to be a better advocate for my child and also provide me with some peace of mind.  I can't tell you how many times I wished I was able to read an echocardiogram image, just so I would be able to know the results of Isaiah's echos as they happen.  I sometimes wonder if it is too late for me to get trained as an ultrasound technician or go to med school.  My general bio university degree just isn't cutting it anymore.

It is ironic that this far into Isaiah's journey I am doing the same thing that parents of children who are suffering from yet-to-be diagnosed Kawasaki disease are doing: looking for answers.  Some of you reading this right now may have even ended up here because you are trying to figure out if your child has Kawasaki disease.  I have heard too many stories of parents whose children were not diagnosed with Kawasaki disease in time, because doctors repeatedly told them it was "just a virus." My advice to you is: do your research, record the symptoms, voice your opinions to the doctors, ask questions, if you don't get answers, ask more questions, always follow your intuition, remind yourself that you know your child better than anyone and repeat as necessary.  Don't stop until your child has received the care they need.  I know that we will never stop.






6 comments:

  1. Thank you for this!!! Everyday I still am looking, researching yet still so many unanswered questions and concerns. I am so glad he is doing better.
    XO
    kristin

    ReplyDelete
    Replies
    1. Thanks for your comment, Kristin. So many KD parents are in the same position as you. I think the most frustrating part of KD is that there are so many unknowns. Hopefully, more answers will be found over time. Hope your little guy is doing well.

      Carin

      Delete
  2. Wonderful advice here! I keep you and your little fighter in my thoughts.

    ReplyDelete
    Replies
    1. Thanks, Leah. That means a lot coming from you!

      Carin

      Delete
  3. You're right, I'm here hoping to glean some more information but I really did get that last part personally. We had the KD diagnosis very early but now keep returning to doctors about my daughters multiple skin issues and multiple inflamed organs. If I have to hear that it could be a virus, an allergy, KD effects or a completely new auto immune disease again (gee, thanks for narrowing the possibilities) I think I'll actually stamp my feet and cry with frustration! If I have to listen to them dismiss certain symptoms because they don't think they're relevant, or listen as they say that she doesn't seem too uncomfortable (she's similar to Isaiah in that she tolerates pain and procedures very well) again, then I'm afraid of either becoming disheartened or go the opposite way and turn into a raving lunatic! Anyway, thanks for this article. It's so comforting to share in a journey with so many like minded parents & families! Good luck xo

    ReplyDelete
    Replies
    1. Thanks for sharing, Adrienne. I am so sorry to hear that your daughter is going through so much right now. I can only imagine how frustrating that must be. Please don't give up hope. With you by her side your daughter will be fine -- I can tell that you will make sure of that! I wish you and your daughter all the best.

      Take care,
      Carin

      Delete