Kawasaki disease, also known as Kawasaki syndrome, lymph node syndrome and mucocutaneous lymph node syndrome,[1]is an autoimmune disease in which the medium-sized blood vessels throughout the body become inflamed. It is largely seen in children under five years of age. It affects many organ systems, mainly those including the blood vessels, skin, mucous membranes, and lymph nodes; however its rare but most serious effect is on the heart where it can cause fatal coronary artery aneurysms in untreated children. Without treatment, mortality may approach 1%, usually within six weeks of onset. With treatment, the mortality rate is 0.17% in the U.S.[2] There is often a pre-existing viral infection that may play a role in its pathogenesis.[3] The conjunctivae and oral mucosa, along with the skin, become red and inflamed. Edema is often seen in the hands and feet. One or more cervical lymph nodes are often enlarged. Also, a recurrent fever, often 37.78°C (100°F) or higher, is characteristic of the acute phase of the disease.[4] In untreated children, the febrile period lasts on average approximately 10 days, but may range from five to 25 days.[4] The disorder was first described in 1967 by Tomisaku Kawasaki in Japan.[5]
It all started on Saturday, June 1st, Lily came down stairs that morning and told me her neck hurt. I told her, she probably slept on it wrong and it would feel better tomorrow. Then Sunday came along and she said her neck still hurt, so that night as I was giving her a bath I noticed a small lump in her neck. I told Jason to look at it and he said it was probably just a swollen gland. She also had a low grade fever that night. So Monday morning, I took her into the pediatrician and they swabbed her for strep.....that came back negative. They also did a blood count and her white cells were up, so we assumed she had some sort of infection. They sent us home with antibiotics and away we went.
By Tuesday, June 4th, she still had a fever, she started vomiting and I swore the lump in her neck was getting bigger, but I called the doctor again and got something to help with her stomach and she seemed a bit better.... till Wednesday, June 5th at about 4am when she came into our bedroom and was throwing up and the lump in her neck had at least doubled in size and she could barely move her neck from side to side. At that point I started to get VERY worried. I made sure we were ready to go by 8am and headed to the doctors as they opened. At that point they did another blood count and the numbers were worse! Our doctor then made the decision to admit us to The Medical Center of Georgia Children's Hospital.
When we arrived they got us checked in and immediately started doing tests and administering IV antibiotics. They assumed that this was just some sort of neck abscess and that stronger antibiotics would do the trick. We planed to be there maybe 2-3 days. They were putting off doing any kind of CT scan on her neck, because CT scans do have a lot of radiation, but we really were worried and kept pushing for one. By Thursday, June 6 we had been there a full 24 hours, she had had several doses of antibiotics and she was no better. The doctors then decided they would do a CT scan and at that point, Lily started getting a rash all over her body. Her fever was still at least 101 with tylenol and advil every 6 hours. The CT came back and showed she had 2 swollen nodes, but no infection. I think we were all getting frustrated and Lily was starting to become combative and angry and it was NOT like her at all. At that point, the doctor came into talk with Jason and I and she said she was thinking it could be another diagnosis, but it was highly unlikely. When I asked her what....she said Kawasaki Disease. At that point, I was shocked, I had literally JUST 2 weeks before watched a Grey's Anatomy episode on that exact thing and I knew that if that was the case, it needed to be treated within 10 days of the onset of fever or the child could suffer permanent heart damage or even death. At that point Jason and I both started researching this, because event thought the doctor suggested it, there is NO test for it, you just have to pay attention to symptoms. At this point she had fever, rash, swollen neck, irritability, and her foot was starting to swell and she couldn't walk on it.
The frustrating thing was that all the doctors found the KD diagnosis unlikely, because she did not fit the "normal" age range of 2-6 years old and normally males. I was so frustrated and I just KNEW in my gut this was it. I seriously felt like God had me watch the Greys Anatomy episode for a reason and REALLY pay attention. When I tell people about it now, they all laugh, but it was a sign!
By Friday, June 14 we were still waiting, waiting and waiting!!!! They decided to change the antibiotic she was on to the "MOTHER" of all antibiotics and STILL NO CHANGE!
Saturday, June 15th, I notice her eyes looked bloodshot and her lips looked dry and they were splitting down the middle.....2 more KD symptoms! At this point though, I kinda thought maybe I was imagining this stuff and just wanted a diagnosis of something!!! Lily looked the worst I've ever seen her by Saturday night and I was becoming frustrated and very scared. They finally decided they were going to do an Electrocardiogram and check her heart. This was good, because we knew they were finally taking the KD diagnosis seriously. The doctors were probably getting sick of Jason and I constantly asking them about KD and telling them we thought this is what it was. I had also got them to guarantee us that if she was not any better by day 10 of the fever that they would treat her with the IVIG drug no matter what. We knew she had to have this in order to protect her little heart from damage even if we weren't 100% sure.
Fianlly Saturday night, 2 resident doctors, that we really liked, came to check on Lil. I told them to please look at her eyes and lips good and started to get emotional. I told them, I didn't know what they were waiting for!!!! Then not long after, they came in and said that the attending doctor has OK'ed them to treat Lily for KD with IVIG, praise the lord!!!! We were so thrilled and we KNEW this was going to help. They hooked her up by midnight and by 9am Sunday, June 9 she was a NEW KID.
I am so grateful for the research and blood donors out there, without this drug Lily may have died or had permanent damage to her heart. We still had to stay in the hospital till Wednesday, June 12th, but were discharged and that day we also noticed that all Lily's fingers and toes were peeling, yet another symptom. The only one she never got was the strawberry tongue.
She had her follow up echo cardiogram yesterday and they said her heart looked perfect!!! I felt so blessed and proud that she's done so well.
2 things I have taken from this experience are:
Don't EVER give up on yourself or your child. If you think something is wrong, don't let people make you feel stupid, just because they are doctors and you're not. YOU know your child and as parents, we have a sixth sense!!!!
Also, please donate blood whenever possible, We went into the hospital that very first day and they asked me.....If my child needed a blood product, would I allow it, I said YES, but never imagined she would really need one to save her life. You NEVER know when it will be you or your loved one needing it!
I hope at least one person out there will read this post and learn something about Kawasaki Disease and it will help them make a difference!!!
For more information visit....http://www.kdfoundation.org/
Also, attached are some pictures of Lily in the hospital.....
Swollen neck
Rash
