Search found 15 matches

by empoweredparent
Sat Apr 07, 2018 8:08 pm
Forum: General Discussion
Topic: Untreated Kawasaki Disease/Adult Health Related Complications
Replies: 9
Views: 265

Re: Untreated Kawasaki Disease/Adult Health Related Complications

It's not a autoimmune disease but kids with KD tend to have immune systems that are tweeky per a Stanford rhuemtolgoist. Nancy Jane Burns would say the same things and remember the original trigger of KD is an immune system reaction. My daughter was a little more sensitive to vaccines and tended to ...
by empoweredparent
Sat Apr 07, 2018 8:05 pm
Forum: General Discussion
Topic: Does this sound like Kawasaki Disease Drs won’t take me seriously
Replies: 4
Views: 232

Re: Does this sound like Kawasaki Disease Drs won’t take me seriously

Has he had an echocardiogram?? Listening to the heart is not enough. The new standard is any murmur in a child is investigated with echo.
by empoweredparent
Sat Apr 07, 2018 8:03 pm
Forum: General Discussion
Topic: 7 years post KD very high cholesterol
Replies: 2
Views: 1078

Re: 7 years post KD very high cholesterol

My daughter has cholesterol in the 200's starting from age 6. All KD kids should be tested and more closely followed if they have lipid issues. Go the the lipid clinic in your area.
by empoweredparent
Sat Aug 04, 2012 11:12 pm
Forum: General Discussion
Topic: echocardiogram cost for the uninsured kid
Replies: 5
Views: 1204

Re: echocardiogram cost for the uninsured kid

Oh excluding coverage for pre-existing conditions for children under 18 is now know longer allowed under our health reform.
by empoweredparent
Sat Aug 04, 2012 11:11 pm
Forum: General Discussion
Topic: echocardiogram cost for the uninsured kid
Replies: 5
Views: 1204

Re: echocardiogram cost for the uninsured kid

Healthy families in California covers most children under the age of 18 with a family income less than 75k. Google healthy families and you can apply online - takes about a month to get coverage.
by empoweredparent
Wed Jun 06, 2012 1:56 am
Forum: General Discussion
Topic: KD from the fumes of an outboard boat engine?
Replies: 6
Views: 1493

Re: KD from the fumes of an outboard boat engine?

One should use the KD experience as a impetus to educate yourself on the many environmental exposures out there and how they impact health. The EPA has an amazing amount of information that is not widely known to the regular public. The consensus with many diseases is that genetics many load the gun...
by empoweredparent
Mon Apr 09, 2012 11:33 pm
Forum: General Discussion
Topic: In Loving Memory~David "DJ"
Replies: 7
Views: 1408

Re: Remembering David "DJ"

Sorry for your loss. Can you tell us a little more about David - did he have an aneurism or coronary artery disease?
by empoweredparent
Mon Apr 09, 2012 11:24 pm
Forum: General Discussion
Topic: LIFELONG FOLLOW-UP CARE FOR ALL
Replies: 16
Views: 4790

Re: LIFELONG FOLLOW-UP CARE FOR ALL

Unfortunately the AHA Guidelines are very vague regarding follow-up as the AHA does not like controversy and even a few prominent KD researchers don't follow-up. One told me her reason was that then the KD kids would have trouble with insurance. I'm a health care lawyer and that's not true - we cove...
by empoweredparent
Tue Feb 21, 2012 12:08 am
Forum: General Discussion
Topic: LIFELONG FOLLOW-UP CARE FOR ALL
Replies: 16
Views: 4790

LIFELONG FOLLOW-UP CARE FOR ALL

I was very disturbed to see once again some parents stating their children never need to see the cardiologist again. Even if you are at CHOP that doesn't mean you are seeing the KD experts - there are only a few around the country - Jane Burns and Jane Newburger who spend their time researching KD. ...
by empoweredparent
Thu Sep 01, 2011 12:14 am
Forum: General Discussion
Topic: please help ?kawasaki boy 5 years
Replies: 10
Views: 2323

Re: please help ?kawasaki boy 5 years

If a child has a fever they are not out of the window for KD that is ignorance on the part of the doctor. Nancy and Amber please keep in mind when you advise parents that KD might be more virulent that it was 20 years or even 5 years ago and parents need to advocate strongly for treatment especially...
by empoweredparent
Fri Aug 05, 2011 7:51 pm
Forum: General Discussion
Topic: Concerned about 8 mo. old around best friend's son with KD?
Replies: 6
Views: 1546

Re: Concerned about 8 mo. old around best friend's son with

I'm sorry I just have to comment here about people not thinking before they give advice. Yes KD isn't contageous, but the child is still being treated and KD can include an underlying virus and maybe a virulent one. When my daughter had KD, my son had the underlying virus too. It NEVER hurts to be c...
by empoweredparent
Sat Jan 01, 2011 9:30 pm
Forum: General Discussion
Topic: KD Research/Clinic Children's Hospital-NWU Chicago
Replies: 6
Views: 1736

Re: KD Research/Clinic Children's Hospital-NWU Chicago

I agree with you. The problem is that even among the KD experts in the country (Jane Burns, Newberger and Rowley) there is disagreement about whether there are additional long term risks for children with no history of aneurism. That's why we did the patient education video and we filmed a physician...
by empoweredparent
Sat Jan 01, 2011 9:16 pm
Forum: General Discussion
Topic: Incomplete KD, How long is the fever to last afte IVIg?
Replies: 6
Views: 1317

Re: Incomplete KD, How long is the fever to last afte IVIg?

Please watch the parent education video. Jane Burns from UC San Diego is clear that any fever means to call your physician not the nurse. Understand that fever even in children without KD has been shown in studies to raise cardiotropin levels (how they measure heart attacks) and thus increases risk ...
by empoweredparent
Tue Nov 09, 2010 2:05 am
Forum: General Discussion
Topic: Recommended Follow-up after clear echos?
Replies: 6
Views: 1380

Re: Recommended Follow-up after clear echos?

See the KD parent education video. This was one of the main reasons I wanted to make it as we were told no follow up by the local doc when I knew most of the children's hospitals in the country continue to follow up. Hard to argue this one with your doc -- since follow up is every 3 to 5 years if in...
by empoweredparent
Sun Oct 31, 2010 12:18 pm
Forum: General Discussion
Topic: KD Parent Education on YouTube
Replies: 5
Views: 1522

KD Parent Education on YouTube

Here is the link to a parent education created with Jane Burns that we hope to get to all newly diagnosed. This is going to be linked on the Foundation website too. Joe, please put this up in the information line too so it stays on top and parents please refer new parents to the video as it contains...