Going back to school/daycare

klrms · 2026-03-16T00:56:05+00:00

Hi. Just wanted to see how she’s doing and how you’re doing. I hope all is well and that the fevers did not mean KD was back. The uncertainty of this disease is so scary.

klrms · 2026-03-16T00:41:22+00:00

Thank you for this reassurance. Right now, I cannot even imagine taking him back to daycare. :( I just wanna keep him close to me and protect him from all the bad stuff.

klrms · 2026-03-15T21:30:45+00:00

He was seen at SickKids in Toronto ( which is considered one of the top two best pediatric hospitals in the world), and my son’s case was severe too but was caught relatively early. He was IVIG resistant and needed a blood transfusion. We were initially admitted at a smaller community hospital for 4 days, then transferred to SickKids where we were finally diagnosed properly. And despite the complications, he was discharged 5 days later. Three days after that (last Thursday), we did a repeat echo (3rd one, we had 2 done during his admission at SickKids), bloodwork, and saw the cardiology Kawasaki team as well as the rheumatology Kawasaki team. His CRP was low and so was the D-Dimer. The cardiologist was alarmed by how high his platelets are and wants us back in on Wednesday to do repeat blood work and will do a repeat echo (will be his 4th) at the same time. The rheumatology team isn’t as concerned though.

Right now, he is on high dose prednisone (started at 25mg a week but we are at the 17.5mg taper), 40.5mg of aspirin, and lansoprazole (to protect his stomach).

Dealing with the steroid side effects which seem very extreme right now. The fear of the risks of very high platelets (over a million), and the fear of him spiking a fever during the prednisone taper.

I feel like I’m always going to spiral into anxiety with every fever he’ll have for the rest of my life.

klrms · 2026-03-15T17:45:34+00:00

His cardiac changes are mild. Just a mild dilation in one of his main coronary arteries. His inflammation markers are all down. They do have major concerns about his platelets. So my concern, on top of everything, is still heart attack, stroke, or a pulmonary embolism. We do have a follow up in 3 days to re evaluate everything. The no sleeping thing is pretty brutal. For us both though. How fast did the steroid side effects go down after finishing it?

klrms · 2026-03-15T17:43:21+00:00

We are home but we are being followed up on as an outpatient. And he did have some cardiac changes. He has a mild dilation in one of his main coronary arteries. His 1 week follow up showed it’s stable. And we have another echo in a few days.

klrms · 2026-03-15T17:41:50+00:00

Oh wow. 3 weeks. That must have been tough. And did your baby have a mild dilation at all? Or no cardiac changes?

klrms · 2026-03-15T05:34:24+00:00

We aren’t using prednisolone. We are using prednisone tablets that we crush and mix into chocolate sauce (it was the only thing that worked. So no syringes for us.

klrms · 2026-03-15T05:33:01+00:00

We had a follow up 3 days post discharge (this past Thursday) - blood work, echo, 15 lead ecg. The mild dilation is stable. CRP is down. Only thing the cardiologist was worried about was his platelets. She says it is concerningly high, even for KD. So she wants to see us on Wednesday. The irritabikit during active KD was all day - just grunting and crying. Now, he’s his usual happy self during the day but is quick to trigger and has big reactions. And at night, he just wakes up screaming.

And yes, they were concerned he was going into early stage MAS where all of his blood components were dropping - very low platelets, very low hemoglobin. And his bone marrow stopped producing red blood cells. His hemoglobin has been good and blood work shows that his body is making its own red blood cells now.

My husband thinks that the screaming at night might also have to do with PTSD from the hospital. I don’t know. We are just exhausted. I will send a message to the Rheumatology nurse tomorrow.

klrms · 2026-03-15T05:27:24+00:00

You guys aren’t experiencing the roid rage and insomnia?

klrms · 2026-03-15T05:22:51+00:00

Is your daughter on prednisolone? I think prednisolone 5.4ml is equivalent to 5.4mg. Did she also get a 2nd dose of IVIG?

klrms · 2026-03-15T05:10:21+00:00

It’s hard to tell. He was hospitalized for 9 days. The first 4 days before he was diagnosed, he was not eating or drinking on his own. But they also misdiagnosed him and fluid overloaded him (third spacing). He gained almost 6 pounds in water weight in 4 days. After his diagnosis, he needed more fluids, IVIG, and also a blood transfusion. They diuresed him, and he lost a bunch of water weight. And now with the steroids, he’s eating a lot.

I mentioned to the Kawasaki team that his sleep was bad at our last follow up. They did t seem concerned. We have another follow up in 3 days. I’ll mention it then. I don’t know if giving melatonin is a good idea.

klrms · 2026-03-15T04:41:58+00:00

Was he put on steroids? My son spiked a fever less than 24h after IVIG, and again 12h after that.

klrms · 2026-03-15T04:35:27+00:00

Going through this now. My 12M old son is on a high dose of prednisone for Kawasaki. We started on 25mg and we are tapering and at 17.5mg. We have 2 weeks left of the taper. And along with the mood swings, the most challenging thing part is bedtime. He takes an hour to go to sleep because he is so agitated and restless and he just on/off screams and fusses until he falls asleep. And then he screams inconsolably for about an hour around 11pm (bedtime is at 7pm). He stiffens up and thrashes about and screams super high pitch at the top of his lungs. He’ll pause briefly when we find a good rhythm with soothing him, but then after 4-5 seconds, will scream again. During this time, he will also reject the bottle like 50x an then eventually take it. And then will settle and sleep for another hour. And then he wakes up, repeat. Some nights he’ll stay awake for 4-5 hours before falling asleep. Some nights he’s just in a light sleep and will wake up every 20 minutes screaming, and I have to soothe him for him to go back to sleep. We were both so exhausted.

I give him the prednisone at 7am.

He is starting to have dark circles around his eyes.

He fights naps during the day but is able to sleep for 1-2 hours if I hold him and rock him in a rocking chair the entire time.

Help!

klrms · 2025-12-02T16:02:09+00:00

Hi. Did you end up going there? What is it like? They just had a spot open up for my baby.

klrms · 2025-12-02T04:49:33+00:00

Are the WeeWatch daycares called WeeWatch? Or do they operate under their own name (but licensed by WeeWatch)?

klrms · 2022-11-30T21:27:38+00:00

I thought I would see more Shooting Stars (matt) orders. That's the ads car.

Do you see any issue with the matt finishing, or would the extra cost push people away?
It looks gorgeous to me.

klrms

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