Hi Newbie alert Our son had KD last months We are so blessed that his little...

Hi! Newbie alert! Our son had KD last months. We are so blessed that his little heart was not impacted by the disease. He had two IVIG treatments and symptoms have improved. He has a little peeling skin, yet. But can I ask you all how long the irritable disposition endured? He just seems so irrational and emotional. He also isn't sleeping as well. He was a pretty low key, even tempered, great sleep before. I'm sort of going crazy.

24 comments
  • My son was diagnosed 1/15/17 he is still irritable and doesn't sleep well at all. He has good moments and bad moments just take it one day at a time and go with the flow

  • It took my son 8 or 9 months to finally get back to himself completely. It's so hard.

  • 2 years post KD, still dealing with it.

  • Hi. We are a little over s month out too. My daughter still has a short temper. She is 4 so she tells me she feels angry and frustrated and doesn't know why.

  • 1yr post for my son he is 2 now and hasnt slept thru the nite from he was diagnosed its so hard but stay strong ur not on ur own xx

  • 5 years post KD and we still have issues. Not daily but daughter has been hospitalized several times and gets weak on occasions and sometimes still has trouble sleeping

  • It took about 6 months for my daughter to get back to normal. Hang in there

  • It takes most kids about 2 months to feel back to normal...and it takes their worried moms another month after that :) If he is too young to verbalize his feelings, it can be hard ! Co-sleeping works wonders for both mom and child, even with older kids :)

  • My little guy was five and it was probably three months before he really felt like himself again. He had a lot of ptsd symptoms with any new adults, which stemmed from being poked and prodded for several days by tons of nurses and Drs (who I am grateful for and not blaming!!). He wouldn't let me leave his side. We ended up taking him to a counselor. It was really helpful! Hang in there! It gets better!

  • How old is he?

  • That's a long time. So sorry

  • That's is interesting. Mine is 3. He hasn't mentioned that but I should ask.

  • That is a really long time. So sorry!

  • How old is she?

  • Good to know! He sleeps with his brother. But he still seems to have problems.

  • Sounds like PTSD to me. They do t know how to deal with the emotions from the trauma

  • Yes! You hit the nail on the head. He is definately afraid of little things. Like walking downstairs by himself. He won't let anyone (not even grandma) help him. I never even thought about the anxiety side of being treated. The hospital stay was AWFUL. People in and out every hour for 8 days.

  • Yes we go next week to infectious disease. They are gonna run more tests

  • Lori Young McGoldrick apparently where we live there hasn't been a case of KD for more than 10 years so every pediatrician and resident around stopped in to learn from him! I totally understand! See if you can find a pediatric counselor who specializes in trauma. It was so great for Logan!!

  • We live in a small town in Iowa. Our dr had only seen in his residency...he is 58. Lol. The hospital said they see about 1 a month but they too has all the medical students come to see. Plus the internal medicine doctors. Plus the rheumatologists. Lots of new friends. Our other boys loved meeting them all. :) But they weren't being tormented. I think he is pretty little for counseling but it does give me a lot more compassion. I will have to have more conversations with him. Thanks!

  • 7 years and still dealing with it. Extreme irritability and sensitivity. Mood swings. Defensiveness. Never sleeping through the night. All present since KD but manifest a little differently at 3 vs 10 years old. We are beginning testing - labs on blood, liver function, kidney, checking for everything - basic deficiencies etc, sedimentation rates, even doing brain scan/eeg because the irritability and lack of sleep is now to the point that our entire family is exhausted and constantly on egg shells etc. We finally found a physician that believes they just don't know enough about long term effects of KD to say with certainty that KD doesn't cause long term effects (other than heart and the other obvious stuff).

  • Lori Young McGoldrick he was 5 when he got it.

  • Lori Young McGoldrick she was 3 at diagnosis. Had ivig on her 3rd bday actually. She's 6 now.

  • That's how old our son is...three. thanks for sharing. I'm sure everyday will be better. :)