newly diagnosed

General discussion regarding Kawasaki disease
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mrsmars4
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Joined: Tue Jan 19, 2016 12:16 am

newly diagnosed

Post by mrsmars4 » Tue Jan 19, 2016 12:38 am

Hi my 6 yr old daughter was diagnosed almost 2 weeks ago and had 8) 1 IVIG treatment. We were discharged 2 days later. Since she has been having episodes of headaches and breaking out in sweats but not having fevers... it's so strange... her coloring is off and eyes seem sunken in a bit... has anyone else dealt with this? I'm wondering if she needs a 2nd dose?! She has her first follow up with cardiology thursday... I feel like a paranoid freak anymore..... any input?!?!

Thanks

momofthree
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Joined: Mon Jan 25, 2016 3:56 pm

Re: newly diagnosed

Post by momofthree » Wed Jan 27, 2016 4:00 pm

My son was diagnosed almost a year ago at 19 months. My son also had one infusion of the IVIG and was sent home 2 days later on a daily aspirin until our follow up with his cardiologist. He took several weeks if not more to really get back to his normal energetic self. He had those tear-shaped droopy eyes for awhile and his coloring was pale. He was very clingy and whiny for about a month after (I attributed this to just the stress from the illness itself and hospitalization). He also had what I thought was joint pain in his legs for probably 4-5 months post diagnosis. He would scrunch up and hold his legs or rub his knees and cry. My understanding is that if they need that 2nd dose, it's only because the fever does not go away or comes right back. I think this disease causes them to be so miserable that it takes everything out of their little bodies and they take a while to recoup. I know how you are feeling though and I wish only the best for your daughter and family. This illness takes such a toll on a family and you can't help but worry every little sniffle or fever they get..."could it be KD again?"

angelina
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Re: newly diagnosed

Post by angelina » Wed Jun 01, 2016 11:30 pm

My son is 8 and was diagnosed this past January. He was sweating a lot afterwards too, and looked pretty bad for a while. It did eventually stop and he seems fine now. I was worried too and I still worry and feel like a crazy lady! You are not. KD is SCARY and I feel like PTSD sometimes. My son just had a cold this past week and I was crying. He is fine now, but that 100 on the thermometer caused me to loose it. It does get better,and your daughter will regain her strength. Two weeks isn't a long time for recovery for some kids. My son took about a month to start gaining back all the weight he lost and to seem himself. Try not to worry too much. Every kid is different afterwards, so they don't tell you much about what to look for. No fever really is key. I wish you well and hope your little girl feels better soon.

MissDonna
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Re: newly diagnosed

Post by MissDonna » Sun Oct 09, 2016 4:48 pm

My daughter is one, it's been 5 weeks since first coming out with Kawasaki & she was been treated after 5 days having it. Same thing happened with her after a few weeks, her eyes seemed sunken. That went away, she gets a bit unsteady on her feet (probably due to the joint pain), but now she has a rash on her cheeks and private area (I know can be the initial symptoms of KD) but she only ever had a rash when she came out with Kawasaki on her body, arms and legs (symptoms she never had initially). I'm finding it strange at this stage to get more symptoms, as she should be almost fully recovered? Although she's still on aspirin as her coronary arteries are still enlarged. And the rash on her face & private area, by doctors have been blamed on a completely separate skin condition, but what they gave me for it hasn't worked at all?! Anyone had a similar thing happen with their little one? Worried mum here :(

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