The Kawasaki Disease Forum

Hello,
Right now, Dax looks fine. He always has a time after each treatment where you wouldn't know he was ever sick. It's when we get comfortable with the idea that we got the KD under control and will be going home soon, that something happens to set us back. Right now, the echos are still set for every 2 weeks. We will be going to Doernbecher Children's Hospital in Portland Oregon, if we do get sent there. His Dr here seems fairly certain that he will have another episode and we will be going there and has begun the process of arranging transportation. We are in Eugene, about 2 hours south of Portland. Dax is currently taking aspirin and prilosec orally. It's a battle to get them down, because he doesn't eat solids right now, just formula. He stopped eating solids when he got sick. The Dr called this something like refractory KD? I may have that wrong... It's obviously resistant though. His Dr will be in to review this morning's bloodwork later today. Have to run now, but will check back later.

Hi:

The scariest cases of KD are the ones where kids are resistant to the IVIG treatment. I wish I could say that it is rare for children to be resistant, but it seems like more and more kids are. Even the experts are noticing a rise in the number of children who are resistant to IVIG. When this happens the specialists are turning to alternative treatments aimed at bringing down the high level of inflammation. Unfortunately there is no "silver bullet" and some of the alternate meds are very costic, especially to babies stomach. Bobby was only 3 months old when he was diagnosed with KD and he had a particularly severe case. He was given a whole host of alternative meds:IVIG x 3, steroids x 2, plazma exchange, abciximab and infleximab. The Doctors may recommend these treatments for Dax as well. Please push the Doctors for more frequent echo's....it is especially important since Dax has not responded to the IVIG treatments! As long as the inflammation continues....the risk of coronary artery dialation remains high!! This is something they need to know immediately...not 2 weeks later! If Dax does have artery changes, they may need to put him on anticoagulant medications to avoid clots! Even after the acute phase of KD, dialation can still occur, also the platelet count increases dramatically which puts these kids at a higher than normal risk for developing clots. There is a lot more to this disease than just administering IVIG treatments. PLEASE BE PROACTIVE IN YOUR CHILD'S TREATMENT!

This info is not to scare you but to inform you so you are aware of the possible risks and can make informed decisions on Dax's treatments. Again I'm not a Doctor, but I am a mother of a child with a severe case of KD. As you probably know by now, we Mothers do become specialists on KD through experience.

Hang in there! Remember you are not alone. Please keep us posted on Dax's condition.

You remain in our prayers!
Charlene

Thanks, I will talk to the Dr this evening about more frequent echos. She is receptive to my thoughts and questons, so hopefully she'll be on top of it. Right now, Dax is looking great, babbling and clapping his hands. He is trying to eat a couple bites of solids, which is good because he has lost a pound. No one knows how sick he is until they read his chart. Even the nurses seem surprised when they come in and he's grinning at them. This is his pattern though, so we are all watching like a hawk for the slightest change. His vitals are every 2 hrs right now. His Dr seems pretty certain he is going to flare up again, though she's hoping to be wrong about that. Here's a cell phone pic of him taken a bit ago:


Here's a pic of the hive-like rash about 3 minutes after it began to appear:


The rash is completely gone again. His lips are still cracked and bleeding but his tongue is looking less red.

Shari,
I am still wondering if the rash is from something he was allergic to in the steroids or aspirin.......however if it is still KD then everything Char says I agree with. I am wondering also why they aren't doing more frequent echoes. I'll check to see if you have poste elsewhere, I know you were having problems with access before some of the forums. I hope you can get a message on here today. Gosh! Lok at his smile!! Thanks for the pictures. What are his temps and CRPs??
Sandy

Shari:

Hi. Haven't seen any recient posts. Hoping all is well and that Dax remained fever free! Please let us know how you are all doing!

Hugs,
Charl

The platelet count will continue to climb as this is a lab test specific to KD in regards to it climbing higher AFTER treatment.

The ESR(inflammatory test)--if they did one in addition to CRP--will be higher after IVIG, it is a false high so they must go solely by CRP now as this test does not elevate after IVIG.

He could have a secondary bacterial infection--kids with KD also get pneumonia and Ear infections so it is imperative they re-examine these areas to make sure it isn't the source of his persistent fever.

Sometimes, Kid do not respond to IVIG and require Steroids or other medications to treat the KD--this is also a possibility.

I am terribly sorry for the pain and stress you are feeling right now. It is a harrowing experience.

April Ward, RN, NP/PA
Not an expert on this forum
A kawasaki mom

I am sorry, I didn't see your follow up reply about being started on steroids already.
My son had several episodes of itching that drive him crazy--keeping him cool, such as using cold & wet cloths helps reduce itching. We also used Typical over the counter calamine lotions but this was mostly for the psychological benefit it gave him "by applying medicine". My son also had several episodes of what looked like recurring KD by turning red & rashy but the fevers are the key--if not having fevers then unlikely it is a true recurrence. If fever then they are more likely to think it is back/still here.

words cannot express my concern and heartfelt sadness for your son--it is so tough to go through this--be strong.
Try your best to avoid being overly emotional with the doctors--be matter of fact, as clear as you can, and thorough. Watch everything closely. You are your son's best advocate.

April

Just wanted to take a moment to post a note to all the people who have been praying for Dax. Great news! The 3rd steroid dose seems to have worked! Dax's numbers are all falling down into normal range. His Dr says she is surprised at how quickly they've fallen. He is home now, but we go see the Dr every day (yes, weekends, too). He is scheduled for his next echo on Oct 23rd. His temp has remained around 98.6-99.7 for several days. As long as it doesn't go higher, I think he is on the road to recovery. Doernbecher Children's Hospital wouldn't treat again unless his fever hits 100.4 or his heartrate increases out of normal range. The palms of his hands and his toes are peeling now, also. He is still not sleeping well and it seems like his joints hurt, but we are taking it one day at a time. He is on Pepcid and aspirin right now. We don't give tylenol or ibuprofen because we don't want to mask a fever.
He's sleeping now, so I'm going to grab a quick nap before he wakes up again.
Hugs to you all, and thanks again for all your advice and support.

That is great news. I am so happy to hear that Dax is doing well. It's a long roadd but remeber that this group is here for you guys. Be sure to get some Rest when you can, you have been though a lot. We will kepp Dax and you family in our prayers.
Michele

Great news!! We look forward to hearing about his next echo results and praying that all is clear and he is "good to go" without any complications!!
Sandy

Shari:

Hi! I'm so glad to hear Dax responded to treatment without having to pull out the BIG guns! Please keep us posted on the next echo!...Glad to hear that you are grabbing nap during the day while he is sleeping! The best medicine right now is to take it easy, lounge on the floor or couch..cuddle and play, eat whatever you want (yes this does include chocolate - our secret weapon) and blob in front of the tv. You all have been through an ordeal and deserve a bit of R&R!

Your family remains in our prayers! Enjoy!
Charlene

Echo results: NORMAL! All blood levels: falling as they should be. Dax's feet are peeling now, but his fever hasn't gone over 100.1 and the number we are watching for (to avoid) is 100.4. He is still on low dose aspirin and pepcid. He had more bloodwork done today and his Dr put in the referral for the cardiologist.

Great news!!! Haven't you had a pediatric cardiologoist involved during the KD? Usually there is one and/or an infectious disease specialist working with a pediatric doctor if a child is not at a Children's Hospital. It is wonderful to hear that Dax's echo is normal......what a wait, huh?!! Hopefully those numbers continue to drop and he's back to feeling like his old self soon!!
Sandy

Shari:

Yeah!!! Wonderful news, I'm so glad the echo came back normal. It's such a relief when the sed numbers start to come down, it's almost time to put this period behind you and go on with life. As mundane as it sounded before KD, it sounds so SWEET after!

Congratulations!
Charlene

that is great news!!
Pauline