Search found 18 matches

by Ekorkofigas
Sun Nov 03, 2013 7:47 pm
Forum: Activities & Events
Topic: Dec. 6 Chicago Fundraiser
Replies: 1
Views: 4082

Dec. 6 Chicago Fundraiser

Hey Chicago KD Folks! An organization called Donate Your Way has selected the KD foundation as one of their charities for their 2013 fundraiser! Their goal is to bring in $10,000! I was personally touched because a member of the organization recommended the KD foundation after my son was diagnosed w...
by Ekorkofigas
Tue Sep 17, 2013 11:24 am
Forum: KD Stories
Topic: 4 month old diagnosed
Replies: 10
Views: 7011

Re: 4 month old diagnosed

Hey Mindy, We came up with a plan, since aspirin stays in the system for a few days if our son gets a fever we will stop until he is fever free then restart (we would notify and still confirm w/ his cardiologist at the time of fever). He has gotten sick a couple times, once with a slight fever and a...
by Ekorkofigas
Tue Sep 17, 2013 9:53 am
Forum: KD Stories
Topic: 4 month old diagnosed
Replies: 10
Views: 7011

Re: 4 month old diagnosed

Hi Mindy, Our son was diagnosed with KD at 6 months, similar circumstances as your described, it is always so difficult, he received IVID on day 9. He developed large and moderate aneurysms after our hospital discharge and before his two week echo. He was put on lovenox and aspirin, he has had 2 MRI...
by Ekorkofigas
Tue Sep 17, 2013 9:34 am
Forum: Activities & Events
Topic: Chicagoland
Replies: 2
Views: 5682

Re: Chicagoland

Are any KD parents interested in putting something together?
by Ekorkofigas
Tue Sep 17, 2013 9:27 am
Forum: General Discussion
Topic: Whole milk vs. 2% for children with anerysms
Replies: 2
Views: 2754

Re: Whole milk vs. 2% for children with anerysms

Hi Everyone, Just for future folks reference, I talked with our pediatrician and they informed me that they do recommend 2% for kids with heart disease. We are going to make sure that he gets lots of good unsaturated fats as part of his diet (avocado, flax seed oil, fish), to support all the brain d...
by Ekorkofigas
Fri Aug 23, 2013 2:03 pm
Forum: General Discussion
Topic: Can this go on for years?
Replies: 2
Views: 2923

Re: Can this go on for years?

So what I have heard about KD (not a expert by any means), but KD is expected to completely run it's course in about 2 weeks even if it is not treated. In rare occurrences their can be a re-occurrence. So prolonged active KD is not something that is expected. However reading on this board I know a l...
by Ekorkofigas
Fri Aug 23, 2013 1:55 pm
Forum: General Discussion
Topic: Whole milk vs. 2% for children with anerysms
Replies: 2
Views: 2754

Whole milk vs. 2% for children with anerysms

Hello KD community, My son is about to transition from breast milk and formula to cows milk, he is coming up on his first birthday. He has several aneurysms, which are now moderate and large (and hopefully continuing to get smaller :D ). I recently read that some pediatricians are having some one ye...
by Ekorkofigas
Thu Jun 13, 2013 5:24 pm
Forum: KD Stories
Topic: high dose aspirin??
Replies: 1
Views: 2904

Re: high dose aspirin??

Hi There, The reason it is important to go home on aspirin is aneurysms can form within a couple months of KD (typically though,w/in 2 weeks). I assume that you are going in for a 2 week, and 6 week follow-up echos? The high does of aspirin can do two things, work as a blood thinner if aneurysms sta...
by Ekorkofigas
Thu Jun 13, 2013 6:32 am
Forum: KD Stories
Topic: Regression!
Replies: 6
Views: 6770

Re: Regression!

We dropped the lovenox, which is awesome, so no more injections. Now only aspirin, we discussed the possibility of using only plavix, but they were pleased enough with the regression the dr felt comfortable with aspirin, plus their is more clinical data with children on aspirin vs plavix.
by Ekorkofigas
Wed Jun 12, 2013 11:09 pm
Forum: KD Stories
Topic: my almost 3 year old w/kd..ate product from korea..
Replies: 1
Views: 2909

Re: my almost 3 year old w/kd..ate product from korea..

From what I have heard there is no indication that their is a dietary cause. My son was 6 months old, and was exclusively breast fed at the time of his KD. I was paranoid that my extended business meetings with associates from Tokyo, I may have caught something and brought it home. But after talking...
by Ekorkofigas
Wed Jun 12, 2013 11:00 pm
Forum: KD Stories
Topic: Regression!
Replies: 6
Views: 6770

Regression!

We brought our now 9 month old son in for an echo yesterday (about 3 months post kawasaki), any we found out that his aneurysms have gotten smaller! He had multiple large and moderate aneurysm, they now appear to be small and moderate sized! woohoo! We were able to go down to one blood thinner yeste...
by Ekorkofigas
Thu Apr 04, 2013 4:03 pm
Forum: KD Stories
Topic: How long away from school/activities?
Replies: 1
Views: 2948

Re: How long away from school/activities?

Hi I am a newbie so I cant give a ton of insight, and I have a little guy, 6 months old. If I have learned anything it is just take it one visit at a time. Our first echo looked great, then our second showed aneurysms. There would be some restrictions on activities based off of medication (ie blood ...
by Ekorkofigas
Tue Apr 02, 2013 12:28 pm
Forum: KD Stories
Topic: 5 month old kawasaki
Replies: 7
Views: 6392

Re: 5 month old kawasaki

Hi Zana, our echo yesterday was about the same, which is okay with us right now. They are still large but at least they are not bigger which feels like a victory for us right now! We have two more echos this month, one next week and another one sedated mid April. I hope you see some regression!
by Ekorkofigas
Tue Apr 02, 2013 12:01 pm
Forum: General Discussion
Topic: Lovenox experiences
Replies: 4
Views: 5615

Re: Lovenox experiences

Hi Carin, thanks for the reply. Do you guys use the Insuflon catheder, or straight injections? Have you had any bleeding issues being on the anti coag meds? We are nervous about that since George is starting to crawl and will be walking, about internal bleeding in his head and bloody noses.
by Ekorkofigas
Mon Apr 01, 2013 9:40 am
Forum: Activities & Events
Topic: Chicagoland
Replies: 2
Views: 5682

Chicagoland

Hello kd families, we are in the Chicago area, nw suburbs and were curious to know of any events that folks participate in locally for kd! Our 6 mo had kd this month and has been diagnosed with some cardiac issues as a result.