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Kawasaki Disease Answers, awareness and information on symptoms, treatments and tips for parents who have children suffering from KD

Adam's Story

Special Moments
There are special moments in our lives that we will never forget. Time seems to stand still when we remember these moments and they are not held in the place normal memories are held in our brains, but rather they kind of float around in our brains which serves to protect these few special memories from forgetfulness later in life or injury. If you close your eyes and think of your special memory, you can almost feel where it is in your head.

My Special Memory
One of my most special memories was the birth of my first son, Adam. When he was born, I knew instantly that I would sacrifice my life for this little baby. It was the first feeling of real unconditional love I had experienced. Two more little boys came after this one and the feelings were similar, but not as strong as that first child.

KD #1
When Adam got sick and was diagnosed with Kawasaki Disease at 18 months old, I felt very afraid and alone. I had never heard of this disease and I was terrified of what would happen. He had a high fever of 104 to 105 degrees for five days, a rash all over his trunk, red eyes, vomiting, diarrhea, cherry red lips, red palms and swollen feet. He was very, very sick and I had been up for many nights with him. I was 6 weeks pregnant and it was terrible. Kawasaki Disease Answers, awareness and information on symptoms, treatments and tips for parents who have children suffering from KDHe was diagnosed on day 5 and received IVIG and high dose aspirin in the hospital. The echocardiogram in the hospital came back normal and we were so relieved. We were released on day 8 and his fever returned so we were back in the hospital for another IVIG treatment. He was also fighting off pneumonia on top of the KD so he recovered slowly, unable to walk for a month from the arthritic condition in his joints. He was 18 months old.

Some Things Didn't Seem Right
We returned to our normal lives and Adam returned to daycare. My second son was born and Adam seemed to be ill quite often. He had some extreme sensitivities to sound, light and touch. He had transitional problems and we had to give advance notice of activities. We visited a therapist when he was 3 years old because we needed tips on how to parent Adam. We were told to cater to his sensitivities and he would mature and grow out of them. This seemed to work fairly well for the next few years.

KD #2
On June 10, 2005 Adam was admitted back in the hospital for a recurrence of Kawasaki Disease. 1 - 3% of the population can get KD a second time and Adam was unlucky enough to be one of them. He was 5 years old now and the symptoms were a little bit different this time: high fever, rash, vomiting, diarrhea, severe stomach pain, neck lymph node very swollen, delirious, and lethargic. Adam was a very sick little boy. His pediatrician, Dr. Stephen Nathanson, diagnosed on day 5 again and we were all in a bit of denial. Infectious Disease Dr. Victoria Millet was surprised and shocked to see us again that first night and demanded that the hospital perform all tests STAT and begin treatment. We came home 3 days later after 2 doses of IVIG and high dose aspirin and he had crippling joint pain. Dr. Millet consulted with L.A. Children's Hospital specialist Wilbert Mason and he was re-admitted for serum sickness and treated with Naprosyn. We also obtained steroid drops for his eyes because he could not hold them open for more than a few moments without pain.

More Things Didn't Seem RightKawasaki Disease Answers, awareness and information on symptoms, treatments and tips for parents who have children suffering from KD
I was able to force my way through the HMO system and obtain referrals for Children's Hospital in Los Angeles to see Dr. Masato Takahashi, Chief Pediatric Cardiologist and extremely well known in the Kawasaki Disease world. Adam had a small dilated area that had developed in his right coronary that did not digress after 6 months and required daily low-dose aspirin therapy. We were devastated even though we knew how lucky we were to only have a small aneurysm. Adam was supposed to start kindergarten and I didn't know how I would ever be able to let go of him.

Mom Starts to Take Action
I became a parent-sponsor for the Kawasaki Disease Foundation in late 2005 and I helped parents around the world deal with Kawasaki Disease and their sick children. I was determined to learn as much as possible about this disease and stay on top of it for the rest of my life. I read books and CDs on how the immune system works and began a journey of healthy living for my family. Exercise became part of our routine. We began regularly visiting a homeopathic doctor and I became very educated on vitamins, minerals and nutrition. The children stopped going to daycare and I hired a nanny to watch them at the house on the days I went to work. My goals for the family were health and happiness and I thought then everything else would fall in line.

But Things Still Get Worse
As Adam recovered over the next few months, we noticed an increased level of sensitivity which we would eventually find out is was Sensory Integration Disorder. Adam was overly sensitive to almost everything including light, touch, small, sound and taste. We learned to accommodate his sensitivities as he grew and he learned to live with them as well, but Adam's kindergarten teacher picked up on his many issues almost immediately and had the Student Study Team (SST) evaluate him. Adam was labeled with having "Kawasaki Disease Related Disorders" and had an IEP. He struggled through kindergarten, finally learning the daily rituals in the classroom after 6 months of school.
Kawasaki Disease Answers, awareness and information on symptoms, treatments and tips for parents who have children suffering from KD
We were able to calm his tactile system with a "corn-brushing" technique for 8 weeks, but he had a very hard time paying attention. Adam's first and second grades were terrible. I would break down and cry at every parent-teacher conference and IEP meeting. No one knew what was wrong with Adam. No one knew what to do. We would have done anything we were told to try at that point, and we did. The use of a vibrating watch was suggested to us and it was intended to remind Adam to stay on task, but instead it sent him through the school roof every time it went off. He was in tears every day. Adam was passed into 3rd grade even though his end-of-the-year 2nd grade scores were 203 reading lexile (barely 1st grade level) and all other academic and ability scores were in the very low range. All we had to lean on at this point was summer school once again. We didn't know what to do and Adam's future looked very bleak.

A Miracle Occurred
I discovered www.successfulstudentnow.com in June 2008. I took my son to see Sherrie Hardy at the Hardy Learning Center in Camarillo, CA and learned so many things about his learning style that day. We became Sherrie's first home-based Interactive Metronome and Reading Plus client. Interactive Metronome treatment sets the rhythm of the brain and organizes the cerebral cortex so the frontal lobe is open and clear for learning activity. It is a permanent change if done before the cerebral cortex is finished developing around the age of 11 or 12.

Throughout the summer, we did the training every other day starting out with 5 minutes and eventually getting up to 25 minutes. We did not notice any change in Adam during the summer. However, upon the first lexile test in 3rd grade in September, we were surprised to see it had jumped from 203 to 446 over the summer! I requested an IEP meeting and requested the elimination of some assistance since he was approaching grade level in many areas. The school agreed and Adam and I felt the first twinge of success.

A Huge Set Back?
Adam continued improving and we kept doing the Metronome training. However, he suffered a severely broken femur in late November in a playground accident. I knew this would be a huge setback. He missed some school after surgery for Intramedullary rod placement and was on pain meds and temporarily in a wheelchair. But when his lexile was tested again in mid January, it had jumped up to 624 - another huge increase! The physical therapy was helping with his fine motor skills and he was actually keeping his attention in school fairly well, even though he had suffered through multiple surgeries as well as not being able to put weight on the leg for 2 months. I was shocked that he hadn't completely started failing 3rd grade and was maintain grade-level expectations.
Kawasaki Disease Answers, awareness and information on symptoms, treatments and tips for parents who have children suffering from KD
As the leg healed in early 2009, and he began walking, we were able to start Metronome training once again. I was pleased to see that his Metronome scores were just as high as when he had stopped in November from the fractured femur. This told me that the great strides we made over the summer last year had stuck with him. He started bringing home 90% tests again. He was reading lexile 800 books. He was chosen by his class to give a speech in front of the entire school and it was that defining moment for me that took my breath away. I will never forget that moment as I gazed upon my son at the podium as he recited his Jacques Cousteau speech in the microphone. It was that moment that I knew he was going to be fine. Not just fine, but great. These feelings were brand new for me: I always felt alarmed, depressed and disappointed that nothing worked for Adam. Now I felt pride, amazement and hope.

A HUGE Medical Success
Adam had his annual echocardiogram check-up in March at Children's with Dr Takahashi. We knew that when he was old enough, the aneurysm would be the same size as his coronary and he could stop aspirin therapy. But we thought this would happen as a teenager and certainly not at 8 years old. But he had such an amazing growth spurt even with the fractured femur, the aneurysm measured the same size as the coronary! No more aspirin for Adam. No more health directive at school. No more worries about getting injured and bleeding. This was an amazing day for all of us.

A HUGE Academic Success
Some nervousness hung around as Adam's annual IEP approached and his triennial testing. The broken leg became infected and we had another hospital stay and IV antibiotics at home. I requested that the testing be delayed a few weeks. In March 2009, Adam was tested by the school psychologist, the resource specialist and occupational therapist. I hoped he had maintained average test scores through this ordeal. The teacher informed me he was above grade level in all areas, but still had difficulty completing work during class time and listening.

On the morning of the meeting, we were absolutely stunned to discover he was high average to superior in all academics, high average is all O/T areas (even with a broken leg) and average in psychological areas. It was very difficult to keep my surprise to myself as we were told that Adam did not qualify for special services any longer. I asked if the school ever had children move out of an IEP and they told me it does happen occasionally. I asked if they had ever seen it happen this quickly and in this fashion and they shook their heads and said "No, we have never seen this happen to any child like this before".

An Unlimited Future
This chapter is closed. Adam put forth the effort, I put forth the time and patience, and my husband put forth the encouragement and humor and we were a huge success. The next chapter is Adam being tested for the John Hopkins University gifted program and his future is not going to be determined by anything or anyone except himself and his new abilities that have been there all along, only brought forth by the Interactive Metronome training. I almost forgot to mention that Adam can finally ride his two-wheeler bike. We took the training wheels off last October and he rode his bike for an hour without crashing or stopping. I'll never forget the satisfied smile on his face as he rode around the block over and over again.
Kawasaki Disease Answers, awareness and information on symptoms, treatments and tips for parents who have children suffering from KD

An Unconditional Love
Adam is my hero. He is the bravest person I will ever know. The memories he has given me so far warm my soul and constantly remind me what life is about. I close my eyes and I can see his face for the first time at birth, his swollen almost unrecognizable face during his bouts with KD and when he gave me two-thumbs up being wheeled into surgery for the fractured femur. He has an extra sense about him that is so mature always knowing when I am worried about him or fretting over something that just isn't right. Adam is going to be an amazing adult and almost everyone that meets him already realizes that they have just met an incredible human being and are honestly touched by him.

A Promise for the Future
I promised myself and Adam since KD #2 that I will stay on top of KD for the rest of my life. I vow to give each of my children the very best start I can give them and make intelligent decisions about their future. But most importantly, I promise that they will lead healthy and happy lives and everything else will fall in line.

You are reading this for a reason, and I am sorry if the reason is Kawasaki Disease. Please take a moment and send me your child's story to ladydi@kdanswers.com or send me an email and tell me about your child. You can always find me on the kdfoundation.org website under the "bridges" section.


Kawasaki Disease Answers, awareness and information on symptoms, treatments and tips for parents who have children suffering from KD

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