LIFELONG FOLLOW-UP CARE FOR ALL

[empoweredparent]

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. It is still unknown what the long term effects are of KD including myocardial fibrosis (not aneurysm) and increased risk of early coronary artery disease. The risks are thought to increase in the 20's and 30's. There is NO reason and its VERY prudent for all KD kids to be seen by a cardio at least once every 5 years and have an echo as well yearly check for high cholesterol with the GP. This will not effect insurance coverage and if every KD parent/patient insists that this is what they do at Boston Children's and Rady Children's in San Diego then it will become the standard of care. NO GP is going to hold it on their heads if something happens to a patient not followed. Having another child with a heart defect I know that if you have one particular heart defect some centers and cardios are better than others given what their research focus is. It's important for KD parents/patients to stay involved and informed. Just read the numerous journal articles on the NCBI website out of Japan about long term impact of KD with no aneurysms. Better safe than sorry.

[Momcat]

AMEN!

[denise shenton]

AMEN!

laci jane was diagnosed as an extremely rare case. i had only heard of this disease once before she contracted it. she had to undergo two ivig treatments as well as what the specialists called the back up plan. she had not responded to the previous two. after the backup plan of three days of steiroids, i was informed we would then have to rule out leukemia. she was 21 mths at the time. we have since been cleared of all diagnosis. this was two months ago. i will ,as long as i live, continue to follow each and every symptom that may occur. in my lifetime, ive never watched anything so cruel and painful. she is an angel sent from above. thank you denise

[Roswell]

My son was diagnosed when he was 6. We were. We were very luckywe caught it before any serious coronary issues. He was administered three IVIG treatments and was hospitalized less than a week. The purpose for me joining the forum is to reach out to parents to discuss post Kawasaki.my son is 18 years old and the cliff notes version since he was diagnosed includes everything from continuous strep, Epstein Barr, an appendectomy a few years later ,ongoing thyroid issue, chronic fatigue, some rheumatologic symptoms , elevated glucose , etc. I was hoping to connect with some families with older children. And as a side note, when my son was diagnosed I did my own research and discovered manyKD kids were allergic to penicillin prior to Kawasaki. Thanks for any input! The good news is he is a freshman in college and doing well in school:)

[KCLP]

Roswell,

It is encouraging to hear that your son is doing well in college despite his medical challenges. Does he live on campus? Has he experienced any learning difficulties? My sons Pediatrician told me a long time ago the "KDkids are tough!" He is right.

KCLP

[Roswell]

Hello:)
I emailed you directly, hope you got it!
Many thanks,

Roswell

[michellemasonsmom]

Are there updated "guidelines" regarding follow up? When I asked my son's pediatrician at his 5 year post KD mark, she said since the AHA stated if there are no aneurysms at the time of illness than no follow up is needed again (except for the one year visit to the cardiologist). I'm not completely comfortable with that answer and if I had something I could print and bring to her, it would really help!

[valmae]

My daughter had KD at 4 months old in 1989. She is now 23 years old and have a 6 year old daughter. After the initial follow-ups she never did go back to see a specialist. She didn't have any major problems growing up but now she complains of migraine headaches and gets tired fast. They did do an ultrasound on her heart when she was expecting but that was it. Sometimes when she goes to the doctor they say she has a slight murmur but nothing to worry about. Otherwise she is going good

[hasiLA]

I wish there was something like a standard guideline for follow-up's as well. My son was diagnosed last week and my doc told us that follow up's stop at 2 MONTHS post KD (if echo's has been clear).

[empoweredparent]

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 covered our daughter under an individual plan once with no problems. It's actually up to us KD kids and parents to push the follow-up. What you need to say is the key institutions that focus on KD - Boston Children's and Rady Childrens -- as well as many other children's hospitals continue to follow KD kids as late complications well documented in journal articles from Japan where there is more KD can occur. It's rare but ask the doc do they want their patient to be that complication? Also throw out the word that you are active in the KD parent's groups and that continued follow-up is considered to be the standard of care. If your doc balks after that go someone else -- we drive 3 hours every 3 years so it's no big deal and If my daughter had serious issues I would be on a plane to San Diego. It's worth it if you can to try to have a PPO but if you're on an HMO make sure you find a pedi that has a healthy respect for KD. I have one and it makes a huge difference insofar as she understands that KD kids can have tweaky immune systems and knows what she doesn't know. Be strong, firm and knowledgeable because given how many diseases are out there, people or family can easily know as much or more than docs about their particular condition.

[AuntJulie]

Well said! Thank you from the bottom of my heart! My nephew past away at the age of 26 unexpectedly due to artery blockages related to KD. We were not informed of the absolute importance of follow up cardiac after KD. I see so many others now saying "they too are in the clear" and I believe they are being mislead! I certainly don't want to create a panic but it simply cannot be true that anyone whose suffered KD is in the "all clear" because we don't know everything about this disease yet! Why on earth are any Doctors giving the sense of "all clear?" It's up to us to reach out & warn others since the Doctor's & CDC aren't doing a very good job of WARNING KD patients of possible long term cardiac effects!

[SwimmerGirl]

I am so glad that I found this forum! I am now 25, and had KD when I was 5. When I was a kid, we were told that I never needed any further follow-up evaluation. I have not seen a cardiologist since kindergarten! So many things that adult survivors have said on this site remind me of me! I had no idea that KD could have lasting effects until I just recently started having some breathing-related problems and started trying to figure things out.

I have always gotten sick easily, and stayed sick for a long time. I am currently having trouble feeling like I have enough breath. All of the doctors that I have seen pretty much act like I'm a hypochondriac haha. Do you all have any suggestions for how to find a "good" cardiologist for someone like me? What is a "bad" cardiologist like? Most docs I talk to have never heard of KD, and even if they have, how can you tell if they know what they are talking about??

I live in Denver, and the Children's hospital here is very good (it is where I was treated as a child). But as I am no longer a pediatric patient, would a KD pediatrician see me?? How would I go about finding someone, and what treatment would I be receiving..?

Thanks for all the help, this forum is great!

[Nancy]

I would contact the pediatric cardiology department at the Children's Hospital and ask for a referral to an adult cardiologist
who is familiar with adults who had KD. This question must arise as children age out of pediatrics !

best of luck
nancy

[SwimmerGirl]

Thanks for the advice! I left a voicemail for a doc that I found on the hospital website who is listed as a researcher for KD, and also a pediatric cardiologist. Let's hope she calls me back and can refer me to somebody good..!

[chrissymack]

Thank you for this post; I too am an adult "all clear" KD survivor of 18 years, and have had no follow up treatment since the one year ECG. I am self-employed and current uninsured cash-only patient. I, too, wonder the best tests to request, and what direction to go in for follow-up treatment. I was treated as a child at SickKids in Toronto, but am now living in Florida.