Post by borinquen57 on Oct 13, 2015 21:50:17 GMT -5
Last Update (hopefully): Echo came back normal! ID decided not to wait and began giving G high-doses of aspirin late Friday night and the IVIG (KD treatment) around 1AM on Saturday. We were able to go home Saturday evening since everything looked good. Now we just follow up with ID for labs and another echo in a couple of weeks and she'll be on baby aspirin for about a month. She threw up a few times overnight but they said that's to be expected with all the aspirin and IV, so we're just keeping an eye on in that it doesn't get worse. She seemed much happier this evening, which is great.
On a side note, while no one wants their child in the hospital, our children's (Lurie's) hospital is seriously impressive. I've always tried to send something when they mail out contribution letters, but after this, I will definitely make it a point to continue donating. The second you walk in not only are they giving first-class care, they are making sure that these kids are as comfortable and as happy as they can be within their circumstance. That was really great to see.
UPDATE: So, seriously, I posted the first update and a second later, the pedi called. Pedi heard back from ID and they think that with the symptoms G had and the pedi's first concern with Kawasaki (it affects the blood vessels/heart), G should have an echo done. We are being admitted tonight and the echo will be in the morning. If everything is good, we go home tomorrow. If they do find any issues, we'll start treatment. So I'm getting her all packed up, picking her up from preschool, and heading to our children's hospital. The pedi seemed calm, so I'm calm right now too.
UPDATE: So pedi called today. G's inflammation levels are the same which she said isn't necessarily bad and definitely good that they're not going up. G also tested negative for the 12 viruses she tested. Pedi put in a call to the peds infectious disease department to make sure we're not missing anything. I like this pedi a lot; she's good at talking you down but also is very thorough. I guess we'll see. Thanks, guys!
Last Sunday, I went to put DD1 down for a nap and when I looked at her, her chest and belly were covered in a rash. By 7PM her whole body, except her face was covered and her hands and feet were red; it looked like measles, but of course, we vax so I knew that couldn't be it. I took her to the ER, they said it was possibly and allergic reaction and sent us home with Benadryl and were told to give her Tylenol and/or Advil. Over the last week, she had fevers, got better, got fevers, the rash got a little better, and the redness and swelling in her hand/feet got better as well. Our pedi thought it was possibly Kawasaki Disease but the ER didn't, so they just sent us home. Finally yesterday, our pedi did a full blood work up and it seems like DD1 is slightly anemic and has elevated inflammation levels. It can be from a virus (which she was sick) or it can be something else, especially if they keep going up when they follow up tomorrow. I am so terrified that this is going to be something bad. Of course, I googled and that was a bad idea since it can be "nothing" to some cancers. Ever since this started with her, I've been feeling like something is really wrong but now that it's a real possibility, I can't even imagine what I would do with news like this. My go-to coping strategy is to expect the worst so I can be pleasantly surprised but I feel like this time it would serve me better to think positively, and I just can't. I quickly told H that they called back and the results, but I haven't told him what it could mean because I can't open my mouth about this without crying. What am I going to do if something is wrong with my baby?! I'm probably overreacting but guys, I am so terrified.
I'm sorry if this doesn't make sense, I just needed to vent.
first off, HUGS, this must be so scary! I hope you get good news. I will share that both my kids are rashy and frequently break out in a rash when they have a virus or other illness. It's scary every time but it's never amounted to anything serious.
Even the most basic of colds can be terrifying when we are watching our children deal with them. I hope you are able to get answers soon. In the meantime step away from Google.
Post by NewOrleans on Oct 13, 2015 22:15:55 GMT -5
All will be well. She just has an ugly, crummy virus. One time, every lymph node I had in my body swelled up to the point I couldn't walk because the ones in my groin were so big and painful. And my WBC was through the roof. They thought I had AIDS, lymphoma, everything, lol. I had...nothing. All will be well.
Hugs! My daughter went through something similar around 13 months old and no joke, I was convinced she had leukemia. I totally get what you're feeling right now! Big hugs!
With us it just ended up being a horrible, looong streak of different viruses/illnesses mixed with a bit of dairy intolerance (that I thought she outgreW) I hope the answer is similar for you!
I'm sure you're afraid and that's totally normal. The chances are very good that it's not a big deal and staying away from Dr. Google is probably the wisest strategy.
Post by borinquen57 on Oct 13, 2015 22:48:24 GMT -5
Thank you, everyone, it really helped to let it out and try not to think of the worst-case scenario. ladybug, I've diagnosed her with everything from polio to leukemia this week. :?
Big hugs. I have anxiety and know all about freaking the fuck out over stuff like this. Something that has helped me is to remember that it doesn't matter what it "could" be or what % of cases have what outcome, my child has a specific condition and requires a specific treatment. Focus on diagnosis of this child, not what diagnoses are possible.
DD2 had something that looked exactly like measles last summer. It was everywhere on her body. I was terrified. It turned out to be a virus and took about 2 weeks to go away completely. I totally get the worry and am sending good vibes and ((hugs))
Post by speckledfrog on Oct 14, 2015 0:10:06 GMT -5
Something very similar happened to us about two years ago, when DS1 was 17 months old. Body rash, on and off fevers, elevated blood cell count, possible Kawasaki diagnosis, the whole nine yards. At one point he refused to walk. They ended doing two rounds of Rocephin shots, two blood draws on him (that tech was an angel), and an echo but in the end (about two weeks later) it was over and the best diagnosis we got was "strange virus." It was maddening and scary. I hope your strange virus passed quickly and without more hassle.
Something very similar happened to us about two years ago, when DS1 was 17 months old. Body rash, on and off fevers, elevated blood cell count, possible Kawasaki diagnosis, the whole nine yards. At one point he refused to walk. They ended doing two rounds of Rocephin shots, two blood draws on him (that tech was an angel), and an echo but in the end (about two weeks later) it was over and the best diagnosis we got was "strange virus." It was maddening and scary. I hope your strange virus passed quickly and without more hassle.
So scary! She was limping so badly before bedtime today; she just says the bottoms of her feet hurt and her palms hurt too but nothing looks off to me.
Oh man, I've been right there freaking out and googling. I'm sorry you're going through this, it is so scary. Chances are very, very good that this is some minor virus and your sweet little one is going to be on the mend soon. I will be thinking of you guys- sending peace to you and healing thoughts to your DD!
Post by borinquen57 on Oct 14, 2015 10:16:54 GMT -5
I'm sorry, my post sounded like she still had a rash and fever but she hasn't had those since Friday. What we're worried about is that when they did her bloodwork, she came back as slightly anemic (not a huge deal) and it marked for inflammation. She can have inflammation just from having a virus or it can be something else (RA, Lupus, etc.). She complains that the bottoms of her feet hurt her, as well as her hands. Last night scared me a lot because she really couldn't walk before bedtime, she was limping and kind of dragging her feet. It's almost like she can't put pressure on her feet and even giving her a foot massage was painful for her. We go back to the pedi this evening for more bloodwork to see if her inflammation levels rise/lower and to do a viral test (swab). We'll get those results tomorrow afternoon or Friday morning.
Mommy guilt is a bitch though because all I can think is all the times that I've said, "Gia STOP running," "Gia stay still, OMG!". And now she can't do any of that without pain. She told me she doesn't want to do recess at school later because she wants to rest her feet. Fuck.
Post by omgzombies on Oct 14, 2015 11:37:39 GMT -5
Poor baby! Hopefully you'll get the answers you need quickly, and the pedi appointment this evening will help make you feel like there you're making progress in fixing things.
Post by omgzombies on Oct 16, 2015 16:41:03 GMT -5
Glad to hear the docs are taking things seriously, though obviously it's not fun to be stuck in the hospital. Hopefully you'll start to get answers soon.