A 4 year old KD story with cured aneurysms

Personal stories of individuals and families affected by Kawasaki disease
Post Reply
Teng
New Member
Posts: 3
Joined: Thu Apr 28, 2016 8:19 am

A 4 year old KD story with cured aneurysms

Post by Teng » Thu Apr 28, 2016 3:58 pm

Two months ago my daughter was diagnosed with KD, which caused coronary artery dilation and two aneurysms (the largest one 7.4mm), I was so desperate and came here trying to find some inspiring and successful stories. Today I would like to share my daughter's KD story and hope it will inspire KD parents.

About two months ago, my daughter had all the typical KD symptoms such as high fever for 5 days, eye redness, strawberry tongue, throat iflammmation, dry and cracky lip, and even leg pain. Her pediatrician suspected KD and suggested us to get into nearest hospital emergency at night. The emergency doctor confirmed my daughter had KD and moved us to the hospital room for treatment. Howeve on the second day the main infectious doctor in the hospital ruled out KD possibility and thought my daughter had leg inflammation. She was given x-rays, IVs, antibiotics, and even MRI for her legs. After 5-6 days in the hospital, my daughter did have relatively normal temperature and did not complain much leg pain as before (later on we learned it was actually a self-healing process). We were suggested to get out of the hospital after a blood test. But the blood test showed some abnormal data indicating the possibility of KD. Then echo was conducted which already showed coronary artery dilation and two aneurysms (one 5.1mm, another 7.4mm). My daughter was given high-dose immune globulin and aspirin for one night. Next day we were discharged home. The hospital staff excused that my daughter had atypical KD and the aneurysms were very possibly caused by previous KD experience. (never had it before actually). Since aneurysms were already formed, there was no special treatment which could guarantee a full recovery. The hospital cardiologist suggested us to take aspirin every day even for my daughter’s lifelong time.

Coming out of the hospital, my daughter was in a very bad shape. She had no appetite, looked so yellow or pale, had bloody nose every day, had no bow movement and had no energy. I searched website for successful stories. Frankly most of them are sad ones. Many parents reported continuous dilation, continuous aneurysm growth, or abnormality on the coronary after many years. But one story from a Chinese mom gave me a lot of courage and confidence to face the KD. Her son had KD with dilation and aneurysms. She totally dropped all the modern medicine like aspirin and tried oriental herb medicines which cured her son’s KD. Then I read some research papers regarding the KD herb treatment and statistical data about successful herb treatment. Some papers showed evidence that combination of western medicine and oriental herb medicine have a much higher full recovery rate than pure western medicine. My husband and I decided to combine both types of medicine systems to have a try. In addition to taking aspirin, we went to see an Asian doctor who works in an oriental herb store close to my home, the doctor prescribed some herbs which would help appetite, heart, blood, and overall immune system. The herbs had 7 bags, each day we took one bag of herbs and brew them in a pot about two hours until the water is so thick and little. Then my daughter drank the filtered thick water every day. After my daughter taking one bag of herb water, she looked so much better, having better appetite, more active and starting bow movement. So we continued to visit the asian doctor every week so he could check my daughter’s progress and adjusted her herb prescription. We continued this procedure for two months (in the middle, we stopped herbs for one week based on the Asian doctor’s suggestion).

Two months later, we scheduled a CT scanning with another hospital which was strongly suggested by the original hospital doctor due to my daughter’ big aneurysm extending to the far end. When it was close to the CT scanning date, we stopped herb taking since my daughter was given a medicine for slowing her heart rate for CT. When CT results came out one week later, the hospital doctor called and told us the CT is normal, showing no aneurysms or dilation on my daughter’s coronary artery, we almost could not believe it.

Long story short, my daughter looks normal and good now. She is very energetic, happy, and has very good appetite. In these two months, we also watched her diet closely, providing her healthy food such as a lot of vegetables and fruit and keeping away fatty food. I know it would be a long battle for her KD. We still need to be very careful to watch her. We just got more herb medicine to reinforce her treatment results.

I provide our story here , and hope it will opens another window for you to think about your kids' KD treatment. I would be happy if our story can give you some inspiration. For people who started thinking herb treatment, one thing I would remind is that you make sure to find a reliable herb doctor, which is hard though. In general you may more easily find a good Chinese herb doctor in California and New York areas where there are many oriental medicine clinics with good reputation. Another important thing is to communicate with the herb doctor about your symptoms and keep updating them the progress for herb adjustment.

From public material, there is only 50% chance for KD aneurysms to disappear, which is very disappointing data. Kids have very light organs, which could be easily damaged and could also be easily recovered if proper treatment is given.So don't miss the best time to cure KD dilation or aneurysms when your kids are still little. For KD adults who already have some enormous aneurysms, it is also not terrible. There are many successful stories by taking good herbs, good diet, and good exercise without involvement of surgeries. Never despair. Put efforts to create a miracle!


Best of Luck!

User avatar
Joe
kdforum.org
Posts: 218
Joined: Thu Apr 14, 2005 2:24 pm
Location: Oxford, Michigan, USA
Contact:

Re: A 4 year old KD story with cured aneurysms

Post by Joe » Mon May 02, 2016 3:50 pm

Love the passion and research, but have you considered that the two months' time was the likely reason that the arteries returned to normal?

Best of luck to you and your daughter - hope she continues to heal.

Nancy
KD Forum Leader
Posts: 647
Joined: Mon Apr 25, 2005 6:49 am

Re: A 4 year old KD story with cured aneurysms

Post by Nancy » Mon May 02, 2016 7:11 pm

Hi

Since your child was treated with IVIG, one might wish to consider that the regression of the two aneurysms over
a two month period was due to treatment per American Heart Association guidelines ( (IVIG and aspirin ). The convalescent (final)
stage of KD generally ends around the 8 week or two month mark. A child should regain appetite, energy and stamina by that point. The American Heart Association states that "Angiographic resolution 1 to 2 years after onset of the disease has been observed in ≈50% to 67% of vessels with coronary aneurysms" http://circ.ahajournals.org/content/110/17/2747.full

You may also to consider that even aneurysms that have regressed may still show changes within the arteries that require ongoing
cardiology followup: "There is evidence of persisting abnormal vascular wall morphology and vascular
dysfunction at the site of regressed coronary aneurysms in patients with previous Kawasaki disease.
These patients should be counselled to avoid potential risk factors for atherosclerosis, and
long term follow up is needed into adult life."
http://www.ncbi.nlm.nih.gov/pmc/article ... p00307.pdf

best,
Nancy

Post Reply