KD Forum

Hi! I'm new here. Jordan (who is anxiously counting the days till he turns 7 on 8/31) was just discharged last Saturday on 8/18 with KD.

We were to start our vacation on Thursday-just a quick long weekend at the beach. He had a little fever on Wednesday and bright red eyes-my DH thought he had pink eye. He woke up Thurs with red eyes, swollen lymph nodes and high fever. Took him to the ped. who diagnosed bilateral ear infection, but told us to go ahead and go to the beach-he should be fine when the abx kick in.

Fast forward to Saturday evening-he has laid in bed the whole weekend (at least my 9 year old got out to enjoy the beach)-fever still spiking to 104 every day. He said his tongue felt big and he kept biting it. It was bright red and swollen and looked like a strawberry! Off to urgent care we go. While waiting for the doc, I noticed that the palms of his hands and feet were bright red-to match his eyes and tongue. Doc says he thinks it may be Kawasaki disease, but he's only seen it once-about 13 years before. "But don't worry-go home, call your pediatrician and see what he says." I called the Ped and he said to go to the nearest children's hospital (3 hours away) or to the nearest ER.

So DS and I end up driving to the nearest ER 1 hour away, (it was midnight by then) and they gave us a 2 hour ambulance ride to Children's Hospital in DC after doing blood work and an LP. Jordan was admitted and diagnosed with Kawasaki disease and started on IVIG Sunday night.

He felt a little better the next day, and his symptoms were better after one dose, but his fevers were still spiking, so they gave him another dose. He still looked terrible, but they said he could go home, but then his fever spiked again late Friday minutes before we were to leave the hospital. They planned to start high dose steroids on Saturday, but his fever left after the Tylenol on Friday and was gone for 24 hours so they finally let him go home. His hands started peeling the day he left the hospital, and he's very intent on using nail clippers to get rid of it! He's finally feeling a lot better, but still has low grade fevers and some tachycardia.

His first EKG showed sinus tachycardia and second one showed NSR, but possible Right Ventricular hypertrophy. Echo showed mild dilatation of R coronary artery and a LV systolic functioin at the lower limits of normal. He sees the cardiologist on Monday.

This is quite an illness. Jordan has been such a trooper through all of this.

HANG IN THERE! SOUNDS LIKE YOUR LITTLE GUY WILL BE HAVING A LOT OF FOLLOWUP. PLEASE LET US KNOW WHAT THE RESULTS ARE, ESPECIALLY OF THE ECHOS AND DO KNOW THERE CAN BE FEVER FLARES WITH KD. THERE IS A LONG RECOVERY TIME. THANKFULLY, YOU HAD SOMEONE THAT RECOGNIZED THE KD FAIRLY EARLY ON AND SENT YOU IN THE RIGHT DIRECTION. A CHILDRENS HOSPITAL IS THE PLACE TO BE WITH KD. HOPEFULLY MANY OF THE HEART PROBLEMS WILL REGRESS. WE'D APPRECIATE HEARING MORE AS YOU KNOW MORE. TAKE DEEP BREATHS, KD CAN BE SCARY, YOU LEARN TO APPRECIATE THE GIFTS THAT THESE KIDS ARE TO US! WE CAN LEARN AL LOT FROM THEIR STAMINA AND STRENGTH THROUGH IT ALL.

Sounds like you guys came through it great!

My three year old daughter was not so fortunate, she ended up with major complications and in the PICU for many days with a feeding tube. She had Congestive Heart Failure, Pulmonary Edema and plural and pericardial effusions. She is doing much better now, but she almost died. You can read her story in here, under Sophie's story.

It is quite a disease, you are correct. Unfortunate for us and those who will come after us, it is not so rare anymore, it is getting to be more and more common.

Tachycardia seems to be in a lot of KD cases. My daughter had it too. Heart rate of 220 or more.

Good luck with your son and his recovery! It is a long road. My daughter was diagnosed on day 5 which was July 2, 2007. The recovery is long, but Thank God they made it out of it!

Lisa and Sophie

Thank you all for the warm welcomes! It's so nice to find some others who've been through this. Jordan got his second echo today-not very good news . His Rt coronary artery is now dilated to 8mm. They told me to just continue the aspirin and recheck in 1 month. Does anyone know how likely it is for large dilations like this to regress? Is this considered a giant aneurysm? I couldn't think of any questions when the doctor asked me-now I have a thousand...


Lisa, Sophie is such a cutie!! Glad she's feeling better.

Momcat, I couldn't find the photo of your daughter...I need to go back and read her story too.

Thanks, Sophie is my little doll!

I read somewhere the measurements of what is considered to be a giant aneurysm. I think it would be bigger than 8mm but I am sure someone on here has the answer. Hopefully, you will get more info when Jordan gets a re-check in a month.

I will say a prayer for your family and that the re-check goes well.

Lisa

I am very sorry about the news. Hang in there! Jordan will be having a lot of follow up.

My grandson Francesco was diagnosed with KD in January 2007 when he was 7 weeks old. He developed 2 aneurisms, one has completely regressed, thanks to GOD. He still is on a long term anti-coagulation medication (Lovenax- 2/per day) and also aspirin. He used to have echo-cardiograms twice a week. Now is every month.

There is a lot of good information on an arcticle "CAN ANEURISMS DISSAPEAR OVER TIME". The author is Di76, you can get a lot of knowledge how the arteries are damaged and how they can heal. Be patient, get all the knowledge that you can and ask questions. You have to be your own advocate. Now we learn that Francesco was diagnosed very late and several mistakes were made. It was a nighmare for us. Thanks to the Lord he is doing better.

God bless Jordan and yourself, this is a wonderful forum and has a lot of experienced parents that have been where you are now and are always willing to help and give advice.
Please keeps us informed.
Carolina

Hello-
I'm so sorry to hear that Jordan developed that anuerysm. Did they tell you anything about the other heart issues that you mentioned earlier?? Was there only one anuerysm? Unfortunately, lots of us have left the hospital with no heart involvement, only to be crushed at the first cardio follow up visit with bad news.

I am not a physician, but as an experienced KD parent, I would ask for a second opinion. I'm surprised that with an anuerysm of 8 mm, they have Jordan on only aspirin. It seems that most of the parents on this board who have children with anuerysms (including myself) have a secondary anticoagulant (Lovenox, Coumadin, Plavix, etc.). I know that it sounds scary to have your child on a blood thinner, but it is my understanding that it is worth the risk to avoid clotting in those problem areas.

Please use this board to ask questions or ask for support. We all feel for you and are praying for you and your family.
Lily

I am soooo sorry to hear that Jordan has heart complications. My son had KD at 3 months old (you can read his story Bobby's atypical case at 3 months old) which left him with left CA 6.5mm and right CA 8.5mm aneurisms. There is hope that the aneurisms can regress. Thankfully the left aneurisms now (8 months later) range between 2.4 and 3.6 mm and the right is 7.1 mm. I agree with miami that I am surprised they do not have Jordan on, at least, a secondary anticoagulation drug. Bobby was on 3 anticoags until just recently. I strongly suggest re-discussing with the pediatric cardiologist and a 2nd opinion if necessary since it's not only inflamation that is the enemy. This is the time that blood platelet numbers SIGNIFICANTLY increase which puts him at high risk for clots.

How are the fevers, have they stopped? It sounds like Jordan may have been resistant to the IVIG treatment since his fevers continued through the infusion. I'm surprised that they sent you home so soon after the fever subsided. When did they complete the last echo before you were released...it's just such a shock to have slight enlargement of the CA to all of a sudden 8 mm in just 1 week time, but as everyone here on this site knows...this disease is unpredictable.

All we can do as parents is take deep breaths, roll with the punches and stand as strong advocates for our children. Don't forget to take care of yourself as well! We will keep you in our prayers!

Please let us know what happens!
Charlene

Wow, thanks you all for your support! Here's a quick update:

The cardiologist called Tuesday morning and said Jordan needed to be admitted to Children's again for more treatment of his Kawasaki disease. His ESR and platelets were elevated, so off we went.

This time they used Remicade (infliximab). It was a quick 3 hour infusion, and he was feeling great, and I could see his heart rate ease down over the next 24 hours.

Thought he could come home on Wednesday but the echo showed slightly bigger artery. So he had to spend an extra night, to get a blood transfusion and another dose of IVIG, plus they started him on atenolol and Coumadin. Echo today showed no increase so they set him free late this afternoon. Followup echo Tuesday. Everything seems to be trending down except the ESR, but they're not too worried.

I need to go get some rest, but will read all your stories tomorrow.

It's so nice to be able to share stories here and get information from others who've been through it.

I'm so sorry to hear of the continuing complications with Jordan's KD. I'm still surprised that they released you so soon after the acute phase especially where he continued to have low grade fever throughout the week!

Bobby also had the remicaide and infliximab (along with a plazma exchange, abciximab, tPA, heparin, propranolol, enalapril, protonix, zantac, asprin and plavix...Yikes, forgot the drug list was that long) Bobby was also resistant to the IVIG treatment. Have you seen signs of any 2ndary issues like joint pain, abdominal pain, etc? Unfortunately Bobby was too young to let us know if/where it hurt. How is Jordan's hands and feet? Are they still swollen?

All this can be overwhelming, please be sure to make time to care for yourself! Hang in there, it does get better! You are in our prayers!

Charlene

I'm glad that your cardiologist called and Jordan was admitted to the hospital. I could not believe they released Jordan from the hospital on aspirin only the first time.
Take good care of yourself and give Jordan a lot of LOVE and positive thoughts and I'm sure the good Lord will heal him. My prayers are with you. Keep us informed.
Carolina