Mom shares son's battle with Kawasaki Disease to warn parents
Filipino mom Annie Ingles opens up about her son's Kawasaki disease battle to raise awareness about the disease that can be dangerous if not detected early
Three days after her 6-year-old son Caleb had a bout with low-grade fever accompanied by rashes, lethargy, mouth pain, and poor appetite, his mom Annie Ingles started to worry that something more serious could be happening. After her husband spotted unusual papillae (or enlarged protrusions) on their son's tongue, her suspicions started to grow.
She then contacted her son's pediatrician through Viber, sending pictures of his tongue. Her pediatrician soon replied, saying that it could be Kawasaki disease.
"We were relieved that we caught it early to prevent damage to the heart," Annie tells theAsianparent Philippines.
She recounted all her experience in a Facebook post, which she hopes will raise awareness on the rare, but dangerous disease, which can have lifelong effects if not detected and treated early.
"Awareness is important. It might be a rare disease, but it can't be too rare if it happened to someone you know right?" writes Annie in the post, which has been shared over a 100 times on Facebook.
They came in the next day to have a CBC (Complete blood count) and 2D echo exam done, which confirmed their pediatrician's initial diagnosis.
"I had read a bit about it prior to this incident (because I'm paranoid like that and tend to google every single symptom) so I panicked," she continued.
What is Kawasaki disease?
Kawasaki disease is an illness that affects the mouth, skin, and lymph nodes. It commonly occurs in kids under the age of 5. Though its exact cause is unknown, early diagnosis is key. Once its symptoms are spotted early, children with this disease can usually recover within just a few days. However, if it is left untreated beyond 10 days since the onset of symptoms, it can pose serious risks to a child's heart.
Complications include vasculitis, or inflammation of the blood vessels, which becomes dangerous when it hits the coronary arteries---the vessels responsible for supplying blood to the heart. It could also cause disruptions in the heart's normal beating pattern, such as arrhythmias as well as abnormal heart valve function.
How can I tell if my child has this condition?
"My son's pediatrician described it as an overreaction of the body to an infection, hence the fever and the lymph nodes. During an infection, the body works overtime to fight it and our immune and lymphatic system kick in, including all the other vital organs. Once the infection has gone down, the other organs calm down except for the heart. Hence, Kawasaki in itself can resolve on its own and sometimes go away unnoticed. It is the symptoms after that scared the sh*t out of me," wrote Annie.
"Because the heart is still working overtime, Kawasaki attacks the arteries and sometimes the heart muscle in itself," she warns. "The arteries become inflamed and can result in aneurysms and heart attacks later on in the child's early adult life if gone untreated."
The symptoms of this disease often appears in phases. The first phase can involve a fever that lasts for at least 5 days. This phase of the disease can last for up to 2 weeks. In the case of Annie's son Caleb, they spotted a telltale symptom, which is also known as "strawberry tongue" early on.
Here are other symptoms to watch out for:
- severe eye redness
- rashes on the chest, stomach, and genitals
- dry cracked mouth with reddening
- sore throat
- swelling of palms and soles of the feet (purple-red discoloration)
- swelling of the lymph nodes
Once a child with this disease enters the second phase, large portions of their hands and feet may begin to peel. This alarming symptom may also be accompanied by diarrhea, vomiting, joint pain and abdominal pain.
How is it treated?
First, it's important to know that Kawasaki disease has two types---typical and atypical.
"Typical Kawasaki that exhibits all symptoms and atypical Kawasaki where the child has all but one symptom. Caleb was classified as atypical because his fevers were low grade and he had no swollen lymph nodes. This was by the 6th day of the illness," recalls Annie.
Treatment of Kawasaki should begin within 10 days after a fever starts, to avoid cardiovascular complications.
The treatment involves administering intravenous (IV) doses of gamma globulin (purified antibodies), which is a blood component essential to fighting infection. The treatment also involves giving high doses of Aspirin (or low doses over a prolonged period of time) to lessen the risk of heart complications.
"We were at the sixth day. I was so very thankful for quick thinking doctors who reacted swiftly. We were well within the recommended timeline for treatment to be effective," she wrote.
In her post, Annie confided how expensive the treatment was, especially since the dosage is computed according to a child's weight.
"IVIG is based on the child's weight and as you all know, Caleb isn't the smallest kid in the park. He weighs 33.9 kilos. The number of IVIG bottles to be infused is computed based on the weight. Each bottle costs upwards of (P28,000) per bottle."
The infusion took about 12 hours. As of this writing, they are still awaiting an official clearance from Caleb's pediatric cardiologist.
"Caleb is now back to his normal self but he cannot go to school for an entire week until clearance from the cardiologist is given," she tells theAsianparent Philippines. "Aspirin will be taken until cardio tells us to stop."
What has she learned from their Kawasaki Disease scare?
In closing, Annie shared her key learnings from this frightening experience.
1. Kawasaki disease is dangerous when undiagnosed and untreated. It can have long term, devastating effects that can follow a child into adulthood. So it's important for parents not to brush off seemingly simple infections.
2. It's important to find a competent doctor, who is open minded enough to be thorough and consider all possibilities. Your child's pediatrician must not only be hands-on, but can also be reached easily. Most importantly, they must know how to act quickly.
3. Just because a disease is considered rare, it doesn't mean it can't happen to you or someone you know.
4. Be proactive and search for resources to help you. Look into financial assistance offered by government hospitals, like PCSO. However, be prepared for the possibility of a lot of paperwork and prolonged processing times.
5. No question is stupid or silly. So don't hesitate to constantly check in with your child's pediatrician. It pays for parents to be "paranoid. Early detection is key." Above all, be vigiliant!