Search found 104 matches

by marinamom
Sat Jan 23, 2010 8:52 pm
Forum: General Discussion
Topic: Anyone knows a person with KD and not treated?
Replies: 3
Views: 1030

Re: Anyone knows a person with KD and not treated?

I have recently heard from a person on the facebook site (which is more international) of KD not being treated always with IVIG in Japan. Not sure why cost or complications of IVIG -- probably cost. The older folks with KD never had IVIG and are fine but KD may be more virulent now. Yes probably ple...
by marinamom
Sun Jan 17, 2010 7:39 pm
Forum: General Discussion
Topic: Parents/People with No Coronary Issues Alternative Site
Replies: 1
Views: 872

Parents/People with No Coronary Issues Alternative Site

Please join the 600 + other people on facebook http://www.facebook.com/group.php?gid=31878361273 for information with an international perspective on the long term follow-up for those with no coronary issues. We are taking surveys and distributing information as well as giving advice on how to talk ...
by marinamom
Fri Jan 15, 2010 9:31 pm
Forum: General Discussion
Topic: 13 year old w/ KD
Replies: 3
Views: 1155

Re: 13 year old w/ KD

Doctors tend to say kids can go back to school soon. Children will be tired after KD so 1/2 days could make sense. I pulled my daughter out of preschool for January and February (flu season) after she had KD in December. I just felt that her immune system had been through so much that I wanted her t...
by marinamom
Sat Jan 09, 2010 8:52 pm
Forum: KD Stories
Topic: My 11 yr old son was diagnosed with kd
Replies: 20
Views: 12193

Re: My 11 yr old son was diagnosed with kd

That's not a correct assumption for the doctors to make based on the AHA Guidelines but if you peruse around you will see that there is much education to do on KD. Luckily IVIG came among and does help most kids as the speculation is that today's KD is more virulent than the one 20 years ago.
by marinamom
Sat Jan 09, 2010 8:43 pm
Forum: Medical Articles
Topic: How old is KD?
Replies: 3
Views: 1273

Re: How old is KD?

The distinction was made between the large numbers dying of scarlet fever that sometimes produced heart damage buy not aneurism through autopsy. Don't know of another disease other than PAN which is multisystem KD that would produce the aneurism.
by marinamom
Thu Jan 07, 2010 11:27 pm
Forum: KD Stories
Topic: My 11 yr old son was diagnosed with kd
Replies: 20
Views: 12193

Re: My 11 yr old son was diagnosed with kd

You are very lucky. You son did not have a-typical KD he had had classic KD with all the symptoms. KD is is not a-typical just because a child is older - its' just more common in the under 5 set. It is more dangerous in older children because they do present atypically and like your pediatrician man...
by marinamom
Thu Jan 07, 2010 2:20 am
Forum: General Discussion
Topic: Left Ventricle Enlargement
Replies: 4
Views: 1881

Re: Left Ventricle Enlargement

Oh one other thing the cardio might be right on about the fever and the enlargement. So maybe you just want to wait a few weeks and redo the echo so you don't have to go calling all around yet. I am facinated by studies done that even simple fever elevates the cardiotropin levels of kids -- cardiotr...
by marinamom
Thu Jan 07, 2010 2:16 am
Forum: General Discussion
Topic: Left Ventricle Enlargement
Replies: 4
Views: 1881

Re: Left Ventricle Enlargement

My son (with the heart defect not KD) has had slight left ventricle enlargement since birth. It's not so much the enlargement that is the problem but if the ventricle starts to thicken that can lead to pumping issues and failure. The issues is that a large ventricle could (but not definite) cause th...
by marinamom
Thu Jan 07, 2010 2:02 am
Forum: General Discussion
Topic: I need information please
Replies: 9
Views: 2350

Re: I need information please

See my other answer to you under your other post. As for giving the aspirin you may just have to get a syringe mixed with juice and with two people give it to him - hold his cheeks together and he will swallow. My son who had heart surgery hated medicine and even at one point when he was old enough ...
by marinamom
Thu Jan 07, 2010 1:58 am
Forum: Activities & Events
Topic: DC/Shenandoah Valley area
Replies: 10
Views: 7612

Re: DC/Shenandoah Valley area

To the new mom, seems like you are getting a response to the IVIG. Yes I was concerned about Reyes syndrome and aspirin but it is very rare and the good aspirin is necessary (before IVIG it was the only treatment). Watch for a return for fever. Make sure they keep you in the hospital until fever is ...
by marinamom
Tue Jan 05, 2010 2:01 am
Forum: General Discussion
Topic: Cardiac MRI
Replies: 9
Views: 2458

Re: Cardiac MRI

Oh one other thing, angiogram uses x-ray like equipment (floroscopy) which might have higher doses of radiation than the 256 slice CT -- don't have time to research this but wanted to bring it up in case the doc says too much radiation from the CT as the main reason for not considering it.
by marinamom
Tue Jan 05, 2010 1:55 am
Forum: General Discussion
Topic: Cardiac MRI
Replies: 9
Views: 2458

Re: Cardiac MRI

Obviously if they want an angiogram there is a concern or need to check something. The question is whether a non-invasive approach is better. I would ask about a CT instead and not a MRA (which is what a MRI of the heart is called). CT scanners at some centers are now incredible and in 5 seconds can...
by marinamom
Sun Jan 03, 2010 8:44 pm
Forum: General Discussion
Topic: Cardiac MRI
Replies: 9
Views: 2458

Re: Cardiac MRI

Access site bleeding and angio is pretty common. Angiogram is still head and shoulders above cardiac MRI. I would be concerned if it seems my child had a bleeding condition - this can be somewhat checked with labs. Interesting fact is that radial caths (through the wrist) are just catching on in the...
by marinamom
Sun Jan 03, 2010 2:28 pm
Forum: General Discussion
Topic: Support for Heart Defects National Registry
Replies: 0
Views: 719

Support for Heart Defects National Registry

There is no national registry for heart defects. If there was it would help KD research and treatment because many kids with heart defects have similar heart issues and procedures as kids with KD. Please take a moment now to email your representatives -see link -- tell them you are in their district...
by marinamom
Fri Jan 01, 2010 8:07 pm
Forum: General Discussion
Topic: ADVISING ON ATYPICAL KD
Replies: 1
Views: 1288

ADVISING ON ATYPICAL KD

FORUM PARENTS PLEASE BE CAREFUL WHEN ADVISING PARENTS WITH KIDS WHO HAVE SUSPECTED KD THAT THE 5 CLASSIC SIGNS MUST BE MET. ATYPICAL KD DOES OCCUR (ESPECIALLY IN OLDER CHILDREN AND BABIES) AND CAN PRESENT WITH AS LITTLE AS A STOMACH ACHE. THESE ARE VERY OFTEN THE CHILDREN WITH SERIOUS COMPLICATIONS ...