Life for teenager with Giant aneurysms

[jem65]

I would love to hear from other parents who have or had children with large and/or giant aneurysms resulting from Kawasaki's. To give you a brief history , my son now 14 was diagnosed with Kawasaki's when he was 3 1/2 yrs old. Even though he was diagnosed on Day 9 he developed multiple aneurysms, enlarged heart, went into renal failure, had to have a lumbar puncture because of raised intracranial pressure, his liver, spleen and optic nerve all became enlarged.He looked liked a 3yr. old pregnant with triplets, so swollen and puffy . He got two doses of IVIG and steroids. Over the first year the small aneuyrsms regressed and , his kidneys, liver etc returned to nomal but he was left with several large and giant aneurysms and dilated renal arteries. He has been on different medication over the years ,currently he is on coumadin(warfarin) and aspirin. To look at him today you wouldn't think there was anything wrong with him. We have been told by his Drs. that there is less chance of his aneurysm's rupturing due to thickening and calcification of his arteries but he will be always prone to a heart attack. Now as he enters High school , we are facing issues with him regarding sports he is allowed play, weightlifting and career choices .His doctors have given us some advice but I would love to hear from other parents on how you overcame the teenage years with these added issues. Thanks

[pjohnson07]

My son is 10 and was diagnosed with KD at 23 months of age. He has been complaining of vision problems for the last 3 weeks and the ophthalmologist can't find anything wrong and basically has said he is faking it, which is not like my son at all. I had not thought about aneurysms at all but he does also have migraines --- thank you for your post I think we'll be doing more follow up on this.

[cbryan]

My son was diagnosed with KD in 1996 at the age of 4 years. He will be 18 next week. He had grand anuerysms in both coronary arteries, but as of now he only has one large anuerysm in his left coronary artery. From the age of 6 until he was 14 he took Coumadin. In 8th grade, he decided that he wanted to play soccer in high school so his cardiologist switched him to Plavix the summer before his 9th grade. To prepare to play soccer he went on an exercise and diet program which included walking and then jogging. He is now a Senior in HS and is playing his 4th year on the Varsity Soccer Team. In addition to his heart condition he also has asthma so playing a sport like soccer has been a challenge for him to say the least. He will be heading off to college in the fall which will pose new worries/concerns/anxieties for him as well as his father and me. He's not going too far away (45 miles) but for all of us it makes us think of "What if situations".

[jem65]

Thank you so much for sharing. We meet with my son's Drs. next week to discuss his recent angio CT scan. It's great to hear of other teenagers and what their doctors have done. Thank you

[devinsmom]

My name is Katherine and my son is Devin. He is 16 yrs old. We live in S Korea and had to go through the experience in a Korean hospital. With so many questions, the language barrier and cultural differences made it difficult. I am sure you all are wondering why we are abroad. My husband is military and our military hospitals did not have a pediatric cardiologist on staff. Ajou University hospital was the closest hospital unless we wanted to fly him to Hawaii. Time was of the essence in Devin's case because he was misdiagnosed by a cocky male RN (military guy and not on our military post) that was rushing me and did not want to listen. He thought I was just a talkative mom, he even asked me off my cell phone while I was talking to my daughter stateside having her google some info regarding Kawasaki's. Thank GOD for Dr. Paulson who was/is an awesome doctor with the Air Force. Two days later when Devin woke up with a bleeding mouth, we took him back to Osan and Dr. Paulson listened to every little thing that seemed insignificant. It turns out the rash, the peeling a few days earlier, none of that stuff was insignificant.
I will skip to Devin is alot better and I will attach photos. But the magic mouth wash...does NOT work! Also, the important key here is that exactly 2 months later, my first cousin's son, who is eight years old and lives in my home state of MD was also diagnosed with Kawasaki's! I was floored when I spoke with his mother and she said this. We are now thinking that there HAS to be a genetic link. And does everyone notice that it mainly hits BOYS! Well, if I can think of anything else I will post it but I cannot stress how important it is to tell the doc EVERYTHING that may or not seem to be important or pertinent to your child's situation. But when you second guess yourself, just remember it is your child's life and EVERYTHING is pertinent. The pictures and my post is too big together so I will add them separately.

[devinsmom]

I really wish that I could share the photos but it is saying they are too big. SO I guess you all have to take my word for how bad it was. But I really like to share because this is a horrible disease.