Discussion in 'Parents Off Topic' started by momtojess, Jun 14, 2009.
As far as we know, Ryan has also made a full recovery. They are doing it as a precaution to be sure.
Here's Nicoles latest post from facebook
Poor little tyke....
sounds like she is feeling (energetic) better though...
oh no...I hope it goes better tomorrow. Hugs to you Nicole.
Just an update ~ as of this evening, Bella had to have another round of meds. Here is more from Nicole's FB page ~
Nicole Moodie well, Bella's blood pressure went up quite a bit so we had to back down on the dosage of the IVIG again. The one of the reasons that we worry about the IVIG is that it is a human blood product and her body tries to reject it. They give medications to try to prevent it but, like any other donated thing, it doesn't always work well. Regardless she has to have this to prevent heart damage or cardiac arrest along with other, less severe, organ problems. If we can get the IVIG to stop the disease before the disease damages major organs then we will win. Bella is back to being a little monster. She will have meltdowns for no reason what so ever and complains of pain and then a half hour later will be smiling and demanding to go to the family room to play the computer. It is going to be another really long night.
Please keep them in your prayers that the medication starts to work soon so they can all go home!
Oh, I am so sorry to hear that. I will definitely keep Nicole and Bella in my thoughts and prayers for a speedy recovery.
I just love my CWD family We did go home that night and have been so glad to be here. I have been fervently researching this disease and am finding more and more out but getting frustrated at the same time since there is so little studied or written about Kawasaki disease. In the last 2 years it has been discovered that Kawasaki can cause all kinds of other problems ranging from ADHD (think about blood vessels swelling in the brain) to JRA. A lot of these things were not being connected with Kawasaki until some recent studies. Bella still has a LOT of pain in her knees, hips, and feet and cannot walk any more than across the yard without crying in pain. She also still is running a low grade fever. We are still concerned about heart problems since we have been told that anurisms can show later, usually by 12-16 weeks but it is not unheard of to have them show up a couple of years later. Her liver is still not working well and we are watching that closely. I am to take Bella for more blood work next tuesday and then back to the pedi cardiologist on July 6th for more echo's and other tests that they did not name.
I had no real idea how scary this disease could be until I got home. No one told me what can happen once we leave! This isn't just one of those "give her some IVIG and she will be fine" diseases. It is very misunderstood, even by parents. If you do not research and take a Dr's word for it you would never know how scary this thing can be!
Why can't my kids get simple things like the flu, measles, mumps, scarlet fever LOL
oh gosh Nicole - that's so scary. sounds like doing the research on your own is going to be the best thing to get whatever help you guys need. Keep us posted and we'll continue to keep Bella in your prayers.
Glad you and little Bella are home, but so sorry you have another thing to deal with and that Bella isn't quite herself yet. Good for you for being a researcher!! We are our childrens' best advocates, and sometimes their only ones.
So glad to hear you are home. Big (((((((((((((((((hugs))))))))))))))))) to both of you. I know sometimes it gives you more to worry about but at least you are well informed by researching like you have!!
Thanks for the update, Nicole. So sorry to hear about it all but so glad you are so on top on things. Keep it up and you are going to have an honorary MD soon.
Thinking of Bella and you, and the whole family.
I just saw this thread . Big hugs to you and Bella, Nicole!! She is so lucky to have you!!! I hope little Bella will feel back to herself soon. I don't know anything about Kawasaki disease and did a google and early dx seems to be the key! Good for you for following your mom gut!!!
Nicole, I'm just getting back from being gone for a week dealing with Chell's medical issues.
I'm sorry that you are going through all of this. I can't imagine what little, sweet Bella is going though. Your in my thoughts, my prayers, hoping that Bella is ok, for all other upcoming testings.
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