The Kawasaki Disease Forum

My 3 yr old daughter was diagnosed with KD Friday 15 July. She had been ill since Monday after starting with a swollen lymph node in her neck on the Sunday. We are currently on home leave from hospital for the weekend. She had her first dose of IVIG the day she was diagnosed and a second dose on Thurs just gone as they were not happy that she had responded positively enough to the first. She is also on a huge dose of aspirin. Our first heart ultrasound on Wed came back clear and we are due another one next week. We are in the UK and I am starting to think that we were lucky that we got such a quick diagnosis and response....even though I was pushing from day 3 after I had googled her symptoms and KD rang the cherries.

Almost immediately she started the 2nd IVIG she started complaining of a bad headache which she still has now. Her eyes have been sensitive to light throughout her time at hospital. She has also had a very stiff and sore neck, which seems to be getting worse if anything, even as the other symptoms are starting to fade.

I have done some research and see that Aseptic Meningitis is a possible side effect of IVIG treatment and I am wondering if this could be the cause of her current headaches/sensitivity/stiffness. According to the reading I have done there is no treatment available for AM when it is a side effect of drug therapy, it is something that just passes over a week or so. Whilst I want the Dr's to treat my little one the best they can I see no point in putting her in the position of going through a lumbar puncture if all they can do is confirm not treat. She has had so many needles, tests and goodness knows what else I just haven't got the heart to bring something else onto her for nothing. I have until Monday to decide whether to mention it to the docs.....unless she takes a turn for the worse before then

Has anybody else experienced this as a side effect of the IVIG? I would be interested to read your thoughts and experiences.

I am extremely new to this. My 8y/o daughter was just diagnosed with KD, and we were just discharged from the hospital today after IVig treatment. After 18 hours she developed a high fever, light and sound sensitivity, vomiting, and excruciating head and neck pain. Her physician chose to treat her as having aseptic meningitis as he does not see the benefit of invasive tests to rule out what he feels is a known possible side effect of the therapy. So, at this moment, we are on a closely monitoring state of at home treatment. I have been receiving calls every 2 hours from her doctor, and have his home number if changes should occur. I am hoping that your daughter is doing well at this point!

It got worse before it got better and we are still far from full health but she is improving every day! We were also at home on weekend leave when she started really showing what I felt were the symptoms of Aseptic Meningitis. When I took her back in for bloods and a review on the Monday I mentioned it but they did not seem to be too interested. As it turned out her blood results were not what they were expecting....her inflammatory markers were creeping steadily back up and she was still suffering from all of the KD symptoms bar the rash. Her temperature showed she was still running a low fever and her hands, feet and knees were swollen and painful. She was also quite badly anaemic and they started talking about a blood transfusion.

At that point I threw my toys out of the pram as I felt that they were wasting time treating the symptoms rather than actually getting to grips with the KD. We were referred to the local children's hospital under the Rheumatology team and she was immediately started on Steroid Pulse Therapy.....methylprednisolone via IV for 5 days. We came home on Mon with 6 days of oral steroids and we are due back next Monday on the day ward for another round of the IV. This may be 1 or 3 days..they haven't decided yet. All of her symptoms have visibly faded during the 5 days IV, including the headache, neck stiffness and light sensitivity. Today however she has been complaining again of a headache and some neck pain If she is still the same tomorrow I'll be ringing the hospital again! I'm hoping it's just the fact that she is spending so much time sitting in one position when she is normally bouncing around the house, plus the fact that it is really muggy and humid here today......my head also feels like it's going to explode so not sure I can blame everything on the KD!

I mentioned it to the specialist and she agreed that she "more than likely" had Aseptic Meningitis....like your Doctor she didn't see the point in invasive tests for something they could only confirm as a side effect of a drug she'd had 2 doses of. Hope your little one is feeling better soon.

My 4 year old daughter was diagnosed with KD a few weeks ago. After the first IVIG treatment on day 9, we were released from the hospital. After a few hours of being home, she experienced severe head pain and vomiting. She was screaming and pounding her forehead in pain. We were advised to go straight to the ER. We hurried out to the car and she cowered from the light. The pain did not stop until she was given an IV of morphine. No one knew what it was until hours afterwards when they discovered that this could be Aseptic Meningitis. She had a CT scan before they discovered this because they though she might have popped a vain in her head. (A horrific time from a parent's perspective.)

Her first echo was fine, thank God.

She is on aspirin therapy now and still has days where she looks pale and sickly, or is tired with bags under her eyes. Her behavior is very different and has many emotional outbursts. (I would say she has post traumatic stress disorder from the 3 ER visits and 3 nights in the hospital since this all started.)

We are on Day 27 at the moment and still have not been fully discharged from hospital. She is back in on Monday for another round of IV steroids.....hopefully it will just be the one day and then we can go back as outpatients in future

Her headache and other Meningitis symptoms subsided on their own in the end although they caused her no little distress whilst she was going through it. Such a toll on a little child already flattened by the KD.

I agree with you on the behavioural aspect. Emily spent 21 days in hospital all told, she didn't eat for pretty much all of it and was unable to walk or even sit up. With at least 7 blood tests and 3 canulars plus not having more than 4 hours uninterrupted sleep for the whole 21 days, I think the whole experience has been incredibly traumatic for her. Can't say as I am surprised that she has been more emotional than usual. Her routine obviously went straight out of the window when she got sick and trying to reinstate it now has met with a little resistance! She has also had some massive doses of steroids and one of their side effects is mood swings so I have just been doing a lot of deep breathing and dredging up untold patience from I don't know where

Having said that, the past few days she has mostly been her usual mellow, laid back self. She tires a lot more easily and when it is time for bed she's like a puppet with her strings cut...that's when we get the tears usually. Funnily enough she has enough awareness that she has articulated that she is not really sad, she says she doesn't really know why she's crying but she can't help it....poor little sausage She also looks pale and has bags under her eyes but I have put this down to the anaemia and the general lack of nutrition and calories over the past few weeks. She is due more bloods on Mon so I want them to check her Hemaglobin and Iron levels too so we can see where we are with that.

Hope your daughter is back to full strength soon and that this all just becomes a "remember when" at family occasions!