in Child Care & Parenting, Diseases & Illnesses, Family Life & Parenting, Health & Fitness, Personal Posts

Kawasaki Disease & My Son

at
  •  
  •  
  •  

Kawasaki Disease is a rare illness affecting children under five years of age. The cause is still UNKNOWN. “The disorder was first described in 1967 by Tomisaku Kawasaki in Japan.” – Wikipedia.org 

Kawasaki Disease

 

 

 

Day 1 (May 14)

He seemed feverish the night before so I gave him paracetamol. I was checking his temperature every 4 hours as it slowly soared from 37 to 38 to 39 degrees. I took notice of his runny nose and thought that maybe it’s “viral”, as most moms would assume. Through the course of the day, I was giving him paracetamol regularly (every 4 hours) and a sponge bath every now and then to reduce his fever. His temp never really goes down to 37 degrees.

Me and my husband were awakened in the middle of the night when he cried; his body burning with fever. It has been my SOP (or maternal instincts as others would call it) to take him to the hospital if fever persists for 24 hours, so I rushed him to the ER at 3AM.

He was diagnosed with UTI due to bacteria present in his urine. He had been drinking a lot of fruit juices and chocolate drinks for the past few days so I was convinced of the diagnosis. He was given antibiotics, Cefaclor to be exact, and I was asked to observe him for the next few days. We were allowed to go home and later during the night he was saying, “Mommy, is itchy!“, pointing to the area above his lips.

 

Kawasaki Disease Infographic
Photo Credit: jama.jamanetwork.com

 

Day 2 (May 15)

Everything about him was normal, except for the recurring high fever. I waited for the antibiotic to work, usually a day or two after the initial treatment. That afternoon, I noticed rashes above his lips and behind his ears. They look more like long, reddish marks (“pantal” in Filipino). He was scratching them and I had to assume that it’s allergy. He’s never had any allergic reactions to food and medications before, including paracetamol, so I thought that maybe it’s the antibiotic. Later that night, he was rubbing his eyes and they appeared a bit swollen.

 

 

Day 3 (May 16)

He was okay the whole morning but I had to take him again to the hospital because I was worried of the skin rashes. I was hoping that it’s not Dengue fever or Measles. Urine and blood tests were performed – routine urinalysis, urine culture, and complete blood count or CBC.  The doctors said that he might be hypersensitive to the antibiotic, since they appeared shortly after I gave him the medicine. They replaced it with another antibiotic under a different family and gave him antihistamine for the allergy. So we went home but his persistent fever still bothered me.

 

 

Day 4 (May 17)

Rashes above his lips and behind his ears cleared a bit but his eyes became swollen, as well as his fingers and toes. His rashes would fade each time he’s on antihistamine but after a couple of hours they would re-appear. He also lost his appetite and would often lie down. It was late in the afternoon that  I noticed his short, quick coughs (as if clearing his throat) and it seemed to me that he’s having difficulty breathing. He vomited twice and was getting weaker and weaker each day.

He had a massage later in the evening to check for sprains, and we were told that his lymph nodes or “kulani” behind the ears were enlarged. We were at the hospital for the third time and the doctors gave him Prednisone and Iterax for the rashes and sore throat. He had to stop taking the new antibiotic because he was [unfortunately] allergic to it, too.

 

Kawasaki-Disease-Symptoms-Infographic
Photo credit: diseasesforum.com

 

Day 5 (May 18)

My son’s pedia attended a medical conference so we had him checked up by a substitute doctor. Just one look and she knew he had to be admitted right away.

Pedia residents were checking on him regularly and they have already informed his pedia about his situation. After a day of answering questions and relaying the events during the past few days, a doctor calmly informed us that they’re looking into three possibilities: Dengue, Measles, and Kawasaki Disease (KD).

Kawasaki what?” I was at a loss and my mind couldn’t comprehend what was happening. My husband told me that his officemate’s daughter was diagnosed with the same disease before. I googled it right away – Wikipedia, medical websites, and “The Kawasaki Disease Forum…. Losing my 2wks old baby” – Oh crap. My heart sank a little.

I read the mother’s story about how KD took her 2-week old daughter away from her, and a few unfortunate accounts of mothers with children affected by the disease . I managed to choke back my tears before going out of the room. Images of events for the past 2 years with my son started crowding in on my mind. How I spent 9 months talking to him inside my tummy. How I’ve held him close to my heart when he was still a baby. How he made us all crazy excited with every milestone he reached. I love my son so much, and the thought of losing him was heartwrenching.

That day was our 3rd Wedding Anniversary.

 

 

Day 6 (May 19)

Zaiel was referred to an Infectious Disease (ID) Specialist and she confirmed that he has Kawasaki Disease basing upon his appearance and lab results. His fever was still on 38 – 39 degrees. Rashes became evident on his legs, arms, and torso. His eyes were severely swollen and red. His tongue was also swollen, with small bumps, and they call it “strawberry tongue“. Other symptoms include sore throat, shortness of breath, fatigue, and irritability.

As explained to me by the doctors, KD mainly affects the blood vessels, including coronary arteries. Blood vessels (“mga ugat“) throughout the body get inflamed (“namamaga“), and the most serious that could happen is on the heart — coronary artery aneurysm. If left untreated after 10 days, children may have a higher risk to develop heart problems. That small window period is critical and I was thankful that he’s only on his 6th day.

My family was devastated with the news. And somehow it helped that my friends knew about my son’s illness because I was comforted with their words.

 

 Kawasaki Disease Strawberry Tongue

 

 

Kawasaki Disease Rashes

 

 

KD is believed to be an autoimmune disease and cannot be cured by antibiotics. My son isn’t allergic at all to the antibiotics given to him before, it’s just that the disease is highly reactive to it, hence the skin rashes. The only treatment advised by the doctors is the IVIG, and he started his first vial right away.

Intravenous Immunoglobulin (IVIG) contains antibodies that help boost the immune system. One vial costs around PhP 12,000 – PhP 15,000 and he needed 9 vials to complete the treatment for 12 hours. The number of vials depends on the child’s age and weight. Yes, I know, the medicine is too darn expensive. Our wallets couldn’t agree more. My tita, who’s a nurse in the US, told me that over a thousand blood donors are needed to fill up just one bottle. I was later told that my grandfather was also given the same treatment before.

 IVIG vial

 

 

Day 7 (May 20)

After just one vial, his temp slowly drops and he was able to smile again. He shouted, “Chicken!” and we were glad that he’s getting better. His rashes began to fade and we were all relieved that he was responding well to the treatment. Another symptom that came too late is dry, cracked lips. He was asking for the petroleum jelly to soothe his lips the whole time.

An echocardiogram or 2d echo was performed twice and results appeared to be normal (nothing serious), except for that little bulge somewhere in the heart, which is “normal” to all KD victims. My prayers were answered and I couldn’t ask for anything more.

 

Kawasaki Disease Philippines

 

 

1 Week After

The aftermath was the hardest. After we were discharged from the hospital, his extreme irritability left me powerless. Gone was the sweet little boy. I just kept on thinking that it won’t last long and that I need to have enough patience to help him recover. The helper left for a month-long vacation so all the house chores was on me. And just when we thought it’s all over, he was admitted again because his rashes came back. “Hypersensitivity to aspirin” was the diagnosis and they had to lower the dosage. I felt so overburdened.

The skin on his fingers peeled off and his irritability subsided. He was having regular appointments with 3 doctors (his Pediatrician, ID Specialist, and Cardiologist) and was still on aspirin. Aspirin helps prevent further heart complications.

He wasn’t allowed to engage in regular activities yet – running around the house and getting tired.
 
 

Aug 3, 2012

He underwent an echocardiogram for the third time. Results were normal so the doctor instructed to stop his aspirin. ๐Ÿ™‚

 

Echocardiogram Kawasaki Disease

 
 
Thank you my family and friends for the love and support, and thank you doctors and nurses of Capitol Medical Center for making the burden easier to bear.

To mothers around the world who have/had a child with Kawasaki Disease, I extend my deepest sympathy and love.

 

 

35 Comments

  1. Badet

    Oh my, I’m so sorry to read your story. I hope your son fully recovers soon! It’s so hard to see our babies suffer, I’ll be praying for your son. Be strong!

    13 . Jul . 2012
    • Amethystine

      hi badet! thank you so much, he’s doing well and he’s out of harm’s way. =)

      19 . Jul . 2012
  2. dang abad

    where can we buy the ivig? my nephew was also diagnose with KD

    19 . Jul . 2012
    • Amethystine

      Hi there. The hospital provided the IVIG. Sorry I don’t know where else to get it.

      23 . Jul . 2012
  3. jhoanna

    hi there, my son was also diagnosed with kd disease.he’s 3 years old now, 10 days in the hospital. same symptoms as your son. i feel your pain. we did all the treatments also with ivig. and he’s out of the hospital. thank god! but he’s still recovering from now. my problem is that he’s appetite for food and milk has not yet recovered from the sickness. and also likes to sleep more often. always having those sleepy eyes look. do you have the same problem when your son got out of the hospital. lack of appetite and always feeling sleepy? thanks for posting this. this helps with parents that doesnt know about a thing in kd disease.

    01 . Aug . 2012
    • Amethystine

      Hi mommy jhoanna. The doctor told me that after the acute period, the illness still continues in a subdued condition. The aftermath for my son is extreme irritability but after a couple of weeks, he was already doing fine. Maybe the effect differs from child to child. My son is a picky eater ever since so I really couldn’t tell. Try asking his pedia about it.

      I wish your son good health. =) Thank you for visiting my blog!

      05 . Aug . 2012
  4. Sarah

    My6-year old son was also diagnosed with KD.He recovered from the disease but he is now bad tempered and sick from other illnesses all the time. He gets tired easily and is always suffering from shortness of breath. He does not have an appetite for much and he is always having some skin rashes.

    Did your doctor tell you if your son will go through this phase?

    29 . Oct . 2012
    • Amethystine

      Hi Sarah! The extreme moodiness and skin rashes totally disappeared after a few months. Consult your doctor regarding those. My toddler is a picky eater ever since so I wouldn’t know the difference either. He’s getting colds but no other serious diseases so far.

      30 . Oct . 2012
  5. ron erick bagro

    hello, going through the net to search about KD. my cousin who’s 3 was diagnosed with one. now he is in need of andiogram procedure..sad

    17 . Nov . 2012
    • Amethystine

      Hi Ron! Just make sure you update on his situation every now and then. thanks for visiting! ๐Ÿ™‚

      23 . Nov . 2012
  6. Mommy Cynthia

    Hi Sis – thanks for sharing. my son who is only 7 months old ( he turned 7 months yesterday) was just diagnosed with KD. all symptoms are present. 2D echo was just completed this morning and it also confirms that it it really KD. His 2 coronary arteries are already swollen.They will start IV IG this afternoon and yes it was really expensive (30k per vial) and he needs 4 of it. My prayers goes to all mom and dads whose child is a victim of KD.. I hope one day we will all find out the cause of this so we can find ways to prevent it.

    03 . Dec . 2012
    • Amethystine

      Have faith mommy Cynthia! I hope all goes well with the treatment. Keep me updated. Thanks for visiting my site! ๐Ÿ™‚

      04 . Dec . 2012
  7. Felai

    Hello!

    I feel like crying reading your post. I felt the same way or maybe worst than you. My son ( 2 year old and 9 months) was diagnosed with KD last october 2012. He suffered much, he was intubated for 10 days. stayed in the ICU for 13 dAYS. He was also diagnosed with UTI then Dengue. He became critical, swollen all over his body.As a parent, seeing my son lying and fighting for his life is like being stub with no wounds.

    The symptoms are very misleading, four specialized doctors were checking his condition, until everyone agreed to gave him an IVIG but if i remembered it right it was on the 10th day already.
    li
    Thru prayers, God grant my son his second life. after being extubated, he became crossed eye then can’t merely see. I was so sad but still thanking God for his second life. Another miracle happened, after a couple of days, his vision came back without medications.

    but after his 2 d echo, we have known that both coronary artery was swollen. He need to take aspirin and another med for it.

    he was so irritable and moody after. He became asthmatic as well which added to my problem.

    After a month he had his 2 s echo, and his cardio told us that the coronary artery became more swollen..I want to cry, grab my son and hug him that thru it i can protect him for any bad thing to happen. the doctor said, told me that if his case happened in japan, the recommendatiion would be coronary artery by pass operation but my son is only 2 going 3 years old :(. She even ask me “ilan ba anak mo?” it seems an understatement that if anything happened to my son ” meron pa ba akong ibang anak”.. For weeks, i can’t eat and I can’t sleep thinking the condition of my son.

    I keep on praying and praying because I know nothing is impossible. He save my son once and He can do it again. I’m having my faith with God. I leave everything up to Him.

    Now, it’s been 2 months after the last echo. we are waiting for next month for his schedule.

    my son is very active, parang nothing is wrong with him even he has his asthma attack always.

    I am hoping that my son could surpass all these.

    17 . Jan . 2013
    • Amethystine

      Hello Mommy Felai! Your story is heart-wrenching. ๐Ÿ™ I should be more thankful that my son didn’t go through that much and I’d also like to extend my sincere sympathies with you. Your courage is admirable. I wish and I hope that all goes well in the end. Thank you for taking time to read my blog entry, and take care. ๐Ÿ™‚

      18 . Jan . 2013
      • rona

        hi moms,,my son got this KD disease and also thankfull that nothing happen so serious….kamusta na po pa la mom Felai ang son mo?,,,my son had this last 2015,,worst scenario was Christmas and new year nasa hospital kami.

        01 . Jul . 2016
  8. Bong

    Hi,

    I have a cousin (around 4 yrs old) experienced an on-and-off fever last week. At first, while he has having a fever he is complaining that his tummy was aching. My uncle bring him to a doctor and they just give him a medicine to relieve the pain.

    But the next day, rashes started to appear in his arms and legs and thinking it may be just and allergy but when mumps and red eyes are showing, they begun to think that this is not normal fever and allergy. They rushed my cousin again to the hospital, as the doctor says it maybe a “Kawasaki” which is the first time we heard that. My auntie (sister of my uncle) wanted to have a second opinion to a doctor in Del Mundo Hospital (previously Childrens Hospital) in Banawe. And yes, its confirmed that it is “Kawasaki”.

    They admitted my cousin there yesterday, and after the examinations result the doctor told my uncle that its “Kawasaki”, this disease is very rare -“sabi nga nila sakit ng mayaman” in the sense that medication & treatment for this disease needing a big amount. And needed to inject this IV right away to avoid any problem in his heart.

    Right now, per vial is about 8,900+ and he needed 11 vials which will total (almost 99K, where in the world we can get that amount on the same day). We’re hoping to collect that amount right on time.

    The sad part there is, my uncle’s wife was not in Philippines, she just leave for work abroad last Dec 2012. I was working as well abroad and feel guilty, lonely, sad everything when I think of my family. It will be feel more hard for her and feel devastated if she will know what happen to his son…

    I’m praying for my cousin’s recovery and pass this trials… I know god is good and miracles always happens.

    19 . Jan . 2013
    • Amethystine

      Hi Bong! I hope and pray that your cousin gets well asap with the treatment. Thanks for sharing this with us.

      23 . Jan . 2013
  9. Cristianne

    My daughter was diagnosed with KD in 2011. I scoured the internet to get more information about KD but here in Brasil, where I live, I couldnยดt find much information. I found in English.
    I really felt the need to make the KD information, available in Portuguese so last year I launched a โ€œBlogโ€. This is my daughterยดs blog: http://doencadekawasaki.blogspot.com.br/
    My daughter is a healthy child now, she is 3 years old.

    06 . Feb . 2013
    • Amethystine

      Hi Mommy Cristianne! Thank you for visiting my blog. Your daughter is too cute! I’m glad that she’s doing well now. God bless! ๐Ÿ™‚

      08 . May . 2014
  10. Janey

    WHERE TO BUY IVIG IN THE PHILIPPINES?

    hi there my grandson had kd last aug. we we’re able to purchase the ivig from vizcarra pharmaceuticals, they are currently offering the lowest price for ivig, this is their cell nbr – 0917 – 8215267, sorry if i just replied now, think it was priced at 8,950 per vial, jared needed 7 vials, he was confined at the phil. heart center, the name of the pedia cardiologist is dr. wilberto lopez , he’s the best 1 to go to for kd cases bec. he studied alongside the 1 who discovered kd in the latter 1960’s, hope the baby is ok now, i’m praying for the baby, i’m still in trauma of what happened, keep the faith, Godbless!!!

    08 . Feb . 2013
    • Amethystine

      Thank you for sharing some KD info, Janey! ๐Ÿ™‚

      08 . May . 2014
  11. julie anne

    hello po.. pwede ko po ba malaman yun resulta po ng mga test nya.. gagawa po kasi ako ng case study about sa kawasaki disease, salamat po..

    20 . Feb . 2013
    • Amethystine

      Hi! Sorry my reply is too late. Thanks for visiting my blog!

      08 . May . 2014
  12. daisy bonifacio

    hi,
    My daughter was also diagnosed with Kawasaki disease, she is 6 years old now, we are about to be discharge from the hospital (Medical City) tomorrow. It is really a heartbreaking situation knowing that your child had a disease that the reason is still unknown.

    It was her graduation day when she cannot move her neck and she had a high fever (39.2). The symptoms were not full blown so she had to undergo a 2Decho which confirm her Kawasaki disease. IVIG was given which costs 50,038 each (5 vials was given) and a high dose of Aspirin. Eight days admitted in the hospital, but we are still very thankful that there is a medicine for this diease.

    Hoping for my daughter’s fast recovery on this…

    To all the parents whose child is suffering from this Kawasaki disease.. let’s be strong and have faith in GOD!!!

    29 . Mar . 2013
    • Amethystine

      Hi Daisy! 50k is too much! Anyway, it’s good to hear that your daughter is in good condition now. ๐Ÿ™‚

      08 . May . 2014
  13. Chappiieetot Mu

    yung anak ko ngaun nag susuffer xa sa KD .. napaka mahal ng gamot 9k/vials :(( 6vials nid nmen.. sad

    07 . May . 2014
  14. Amethystine

    Hi! I agree with you. But we should all do whatever we can to save our children. Kahit maubusan ng pera okay lang. ๐Ÿ™‚

    08 . May . 2014
    • Gloven Neil Abriam Peralta.

      Hello, Ma’am Amethystine,
      Ma’am saan po ba nabibili yoong gamot para sa KD? kasi po yung anak ko 10 months palang sya eh nagka sakit na sya ng KD sa ngayon po eh kasalukoyan palang sya na nasa hospital at naghahanap ako ng gamot na I. V. Immunoglobulin yan kasi ang reseta ng gamot para sa anak ko.

      maraming salamat.

      14 . Sep . 2014
      • Shalene Rivera

        Hi! We ordered ours from the hospital. They won’t allow us to get from other suppliers kasi handling and storage of the said medicine is very important.

        18 . Sep . 2014
  15. Jolly

    My little boy, 1year and 3mos had kawasaki disease 2 weeks ago and i would like to share a very prominent sign that we’ve noticed on his first day of fever. His BCG scar became red.he also had very high fever, rashes, and redness of lips.we sought consult at day3 of fever and he was immediately diagnosed with KD.fortunately, 2d echo was clear.he was given 6vials of ivig which costs 15k eack at day5, for our pedia advised that the best time to give ivig is between day5-day7 of fever.he is on aspirin right now and is doing great.to all moms, please check the bcg scar of your babies.it could be an early sign of KD. I commend all the parents of all KD survivors for being strong!

    05 . Dec . 2014
    • Shalene Rivera

      Thanks for sharing your story. ๐Ÿ™‚

      17 . Mar . 2015
  16. mommy glady

    thank you for sharing mommy. Now i know what to expect…

    Just this morning, 5th day of his fever, my son’s pedia confirmed that it is indeed KD after the lab result, yun na lang kasi ang last sign na hinihintay nya.. All the physical symptoms meron ang baby ko. tommorow he will have the 1st dose of IVIG. At totoo, masakit na sa puso yung makita mo yung lagay ng anak mo, nadagdagan pa ng price ng gamot… hay….But ofcourse we will do everything for our child.

    25 . May . 2015
  17. che carpio

    my niece is diagnosed of having KD and my sister needs to produce 144,000 for 18 vials ๐Ÿ™

    22 . May . 2016
  18. Marivic

    WHERE TO BUY IVIG IN THE PHILIPPINES!

    Hi, my friend’s daughter had a KD last May 2016 and was admitted in Phil. Heart Center. It is a rare childhood illness that affects the blood vessels and can harm the coronary arteries (aneurysm) if not treated early. According to the doctor, a child who has damaged coronary arteries may be more likely to have a heart attack as a young adult.
    Medicine and treatment were really quite expensive . You can call 0917-8215267, they are currently offering the lowest price (8,950/vial). Her name is Susan Torres, very accommodating and commendable in giving assistance.

    01 . Dec . 2016
  19. Remy

    hello i have also a grandson just 7 months old now who’se been diagnosed with this kawasaki fever and started his treatment which is so expensive and we cant really afford it..But his symptoms were fever on and off and his gums were all red.No rashes so far no red eyes and no swollen except where they have been pocking to find his veins..Echo has been done and thanks God all is well but they say he got a problem in his bloodtest and he is being recomended to a blood especialist..Its really shocking and very hard for us especially financially thats why his dad must have to sell their only aset,a motocycle to have his son be treated..i wonder if our government can’t give the treatment free..May all the sick be healed.

    24 . Mar . 2017

Thanks for dropping by!

Leave a Reply