Jan 6, 2009

Kawasaki Syndrome and other things . . .

This is a long post (probably full of typos as I haven't proofed it). I try not to bore you all with such things but after learning the tragic news of the death of John Travolta's son, I have found the mention of his having Kawasaki Syndrome very interesting. I think the news world might be mixing things up a bit though and haven't done their homework. Some of the news stories I have heard made it sound as if Kawasaki S. causes seizures and it does not. I know this because my 17 year old son had Kawasaki Syndrome. I find it interesting that Jett Travolta has had connections to all three things we have gone through with our son. Kawaski's, seizures, and though the family denies it, someone believes somewhere that Jett had Autism for some reason I haven't learned about. Our son, Shawn also has had seizures, and has Asperger's Syndrome which is a high functioning and very misunderstood form of Autism though most people prefer not to mention that Asperger's is a form of Autism. They don't want the stigma of the word Autism because no one wants you to think their kid bangs their head against the wall all day. But Asperger's is not ADD or ADHD either though one of them often accompany it. I thought maybe by sharing our story about Shawn, it might help some of you with a kid you know or a grand baby or someone else down the road. I wish someone I knew had known something about these things that happened with Shawn and maybe we would have gotten things fixed sooner and saved a lot of years of stress and worry.

Shawn had his seizures when he was a baby - 10 months old. They were awful and some lasted over 30 minutes, several a week. When the first one happened and I called the paramedics, the seizure was over by the time the ER doc saw him and he tried to tell me I was imagining things that he was probably just not fully awake and that I worried too much. It took many weeks and a misdiagnosis of epilepsy and dozens and dozens of trips to the hospital because antiseizure meds, even adult doses, had no affect, and then through a nurse's random testing in an ER in another state, we were finally able to put two and two together and helped the Dr.s figure out his problem. That nurse just happened to test Shawn's blood sugar during a seizure and it was 21. It should be at least over 80. So the next seizure and the next trip to the ER we asked them to test his blood sugar again. It was 19 that time. So when brought to the Neurologist's attention by us, he immediately referred us to an endocrinologist who discovered Shawn's pancreas was not functioning right and producing way too much insulin. We weren't out of the woods because again, medication didn't seem to be helping and again he was put on the maximum adult dose though he was only 1 year old at the time. As a side effect of the medicine he became anorexic and grew hair all over. A side effect of such huge seizures and low blood sugar is brain damage. He became skin and bones with a swollen belly like what you might see in a picture of a malnourished child in a third world country, only with hair all over his face and arms and legs and back. But just as we were preparing for some very serious surgery to remove half of his pancreas (which they told us would entail basically cutting his little body in half), it miraculously started working. We were pricking his fingers and toes 5-8 times a day to test his blood sugar and long after it should have started working, the medication did and the seizure stopped. He was on that medication for 5 years and we struggled to get him to eat and gain weight but he was growing taller and bigger and we decided to try and gradually take him off the medication and see if his pancreas would work okay on its own so that he could gain weight and look more normal.

It all worked out, just as we hoped, but we were left with a child with very prominent speech problems and things that seemed just a bit off yet easily excused to children developing at different rates. He was off meds and we were so happy about that and no seizures for years. Not a year after taking him off the meds he was diagnosed with Kawaski Syndrome after being really sick for 2 weeks. He had a fever that just wouldn't go away no matter what we tried. He was so listless. His eyes were red and his lips and tongue - red like he had eaten a bowl of strawberries. He barely wanted to move. A few days later the skin started coming off of his hands and feet. We had already gone through all kinds of blood tests to see if he had mono or some other kind of "normal" illness. Then we were told his white blood cell count was off the charts and he would need more tests to make sure he didn't have leukemia - the longest three days of my life. The next blood work showed his white blood cells were dropping but his platelet count was extremely high. A specialist was called in to look at his case and we were called to the Doctor's office after hours - now the longest car drive I have ever taken, this time to go into a Doctor's office and get the prognosis. That's when we were told it was Kawasaki Syndrome. At that time, the first case our doctor's practice had seen. We were sent immediately to a cardiologist to look at Shawn's heart. The window in which Kawaski's is normally treated had already closed. Now we had to worry about him having heart problems or aneurysms. He was put on aspirin and had to avoid all physical activity and excitement - anything that might cause his pulse to rise and burst an aneurysm or even cause a heart attack. He was 7. After several months, the cardiologist cleared him for normal activity and took him off the aspirin but we would need to have his heart checked every six months for several years to make sure there was no damage. Again, we came out okay from that and now he doesn't have to see the cardiologist again.

When Shawn was 9 we started realizing that those things that were just a bit off were causing problems. His speech was not getting better. He had a horrible stutter - I mean awful. That caused social problems with other kids - he had few friends and was made fun of though he didn't seem to care. He rocked when he spoke, as if to keep time. He had little eye contact when he spoke. He couldn't write well. Anything that required him to write took hours - I mean hours. 2nd and 3rd grade homework that was supposed to last 30 minutes took us over 3 hours to do. He was well behaved and sweet and affectionate. He was a good boy. He was not hyperactive, but very repetitive and had lots of focus problems. A piece of string on the floor would so fascinate him - he could play with it and completely zone out from what a teacher was saying or from doing what homework he should have done and when pulled out of his momentary trance he would feel as if hours had passed. It frustrated him. He would have complete melt downs every few months where he was beyond comforting - they were illogical. He started having problems sleeping. And he started seeming hypersensitive - the texture of sheets, the tag or seam in his shirt, the tongue of his tennis shoe, the smell of dinner cooking bothered him to no end, he couldn't control his reaction to these things. He wanted to please us, it was obvious, so his inability to control what he could tolerate caused him to get very upset. He started to realize this wasn't normal and seemed illogical but he could not control it. After trying counseling, behavior modifications, even diet changes, nothing helped. So, we finally put him on ritalin. Immediately the medication helped, the rocking got better, his handwriting looked like it came from another child, and he could focus. He once described how his brain worked by saying it seemed his thoughts were like fireworks shooting off in all directions and he couldn't lasso them in and with the medication he could.

Not long after starting the medication, his speech therapist called us in to her office and told us, off the record and unofficially, that she thought Shawn had Asperger's syndrome. She noted his lack of understanding social nuances, his huge vocabulary, his obsessions with topics, his droning and long monotone speech patterns with little facial expression, his lack of great emotion. For instance, Shawn can explain now that he is sad about something but he hasn't cried in years, not even over the death of someone very special to him. He can't stay sad, he doesn't jump up and down with joy either - he is very, very even keeled. The psychologist, which we soon quit seeing, never even mentioned Asperger's to us and I had no idea what it was. We went to see a psychiatrist that was recommended and he changed our lives. Asperger's, as he explained to us, was in the Autism realm or spectrum. Asperger's kids exhibit many traits associated with Autism but often are highly intelligent and high functioning, just quirky, maybe eccentric to others. Bill Gates, for example is said to have Asperger's. Shawn was given a full pschyciatric evlaluation and we discovered his IQ was extremely gifted - not far from genius. He qualified for Mensa in 5th grade. It is interesting that all kinds of doors opened up for us because he was gifted - now he qualified for help at school which we weren't even seeking really. I thought he should've qualified for help regardless of his IQ and that has always bothered me. But, the evaluation also revealed that he was starting to exhibit some excessive compulsive behaviors some of which we were already noting ourselves. He couldn't use a public restroom which caused stomach and digestive problems, continued repetitive illogical routines, pacing, his food sensitivies were getting worse (he said he could taste the plastic if his sandwich was packed in a ziploc so we tried wax paper bags, then tupperwear and finally he quit eating lunch at school), his needing to wear swim trunks to take a shower anywhere but our bathroom, germ phobias, his very literal take on the world and any conversation. He was more comfortable with adults and has always loved very detailed and long conversations on everything from every type of shark and all of their biological differences to religion. He was reading books on quantum physics (I still don't even know what that is really!) but couldn't remember to take his homework out of his notebook and hand it in. He was never very emotional or whiney. He has never been shy. He is over confident and outgoing. But, we were told to always keep him on his medication, that Asperger's kids are at great risk of depression, mood disorders, becoming bipolar and then self medicating . . . using drugs to try and feel more normal, try to feel emotion or try to surpress emotion. And, as these kids get older, they get so tired of trying to control all of these behaviors themselves in order to fit in, they just wear out. So, that's what we've done. We never even suggest that he not take the meds until he is past his growing teenage years. And, we keep seeing the psychiatrist and we don't keep his Asperger's a secret. He embraces it, mentions it when he needs to, doesn't when he doesn't need to. It's just him. We have to explain it sometimes because he is so literal and still has no social grace. For example, my dad asked him once "Shawn, how'd you like to go clean out the birdbath?" Shawn's reply, "No, not really". My dad knew he wasn't trying to be disrespectful he was just being literal - that would need to be explained to most folks that don't know him well. He will still ask a family friend if they're getting him a Christmas present, for instance, cuz he knows what he wants and he doesn't want them to waste their money on something he doesn't. He's just very matter of fact and has no social understanding that you are not supposed to ask such things. Sometimes he is refreshing and profound, sometimes he is a giant pain in the arse.

Today, Shawn is 6'2" and big - overweight really, not obese, just big. As soon as we start to worry about it, we remember his skin and bones days and I'd much rather have him a little big. All the hair he has is supposed to be there now. He has overcome many of his quirks himself as he matures, but he still has some left. He can go to the bathroom in public restrooms now. He only stutters when he gets really excited. He eats his sandwich even when it's been packed in a ziploc. He really only complains about smells when it involves tuna. It doesn't take us 3 hours to find a pair of shoes with a tongue that's not too fluffy to be comfortable. I don't have to take the tags out of his clothes or try 50 different sheets on his bed. He looks in your eyes when he talks to you and though he still doesn't know how to be sad, he knows how to be very happy and if you know him, you can tell.

So, as for the Travolta family, my heart really goes out to them. Maybe Jett was an Asperger's kid. Maybe not. I'm not sure why some say he had Autsim and the family denies it - I don't know that whole story. Maybe he was just quirky. Maybe there is some relationship between seizures and Autistism spectrum disorders. Maybe there is a relationship with Kawaski's Syndrome. I will be interested to find out if and when there is an official cause of death. Kawaski's has been recently blamed for unexplained heart failure in young athletes. Maybe the heart was involved. It makes me want to go get Shawn checked one more time since it's been so long. Maybe it was just a seizure and a horrible unexplainable tragedy. Maybe knowing what I've told you about Shawn will help you help someone someday understand some kid, especially. Maybe it will save you or their mother from the prematurely very gray hair I have.

p.s. I should note that we have a completely normal teenage daughter too that has had no seizures, no ADD, no Asperger's, no health problems of any kind. Isn't that weird?


TxScrapAddict said...

God Bless you Marsha. Thank you sooooo much for sharing. Our family hahs familiarity with Asperger's but not Kawasaki's.

Sandra Evertson said...

I just read your post, it is amazing how resilient we can be! Beautiful post and Thank you for expressing it! It's so important for all of us to pass along our knowledge!
Sandra Evertson

House of Hullabaloo said...


You have so much going on in your life! I can feel your heart aches and joy with your son. My oldest has Cystic Fibrosis and has had additional medical problems through out the years some relating to CF and some not. I have lovingly called him my science project. It is true that we are not given anything we can't handle but sometimes I wonder. I hope I get to meet you some day.

This is too long for a message but I tried not working and pursuing art and I couldn't do it. I lasted about two months, then I enrolled in on line college to get my teacher certification (Yes, I have a B.S. and have had a real job at one point and been a cashier too) and started substituting. I've been permanent substituting since October. I get more art done when I am focused on something else besides art and I do love the people contact. If you need to talk e-mail me and I'll call you. I think I've got about ten years on you and have been through some of the same things you have.


Karen from A`Musements said...

Marsha, Thank you for such a warm and honest post... I have no first hand experience with family members who suffer from Autism, Asperger's, Kawasaki Syndrome, etc., but I have been very moved by the forthright plea for understanding that people (most recently Jenny McCarthy) have made for help understanding and curing the people they love with these afflictions.
Shawn is a lucky young man to have you for a mom, and your family is so fortunate to have a great guy like Shawn to share your lives. I am sure your strengths outnumber your weaknesses, but it must be a never ending battle to keep up.
You are sure a great person!
Now I really feel behind, since you are able to not only have an additional dimension to your family life to keep up with, but still manage to create TONS more art that I eke out! You really ARE a magician!
Thank you for one of the most moving posts I've read and Happy Days to you, Shawn and the rest of the family!

Cha Cha said...

I am in awe of your grace, my dear. Thank you for sharing your story. I am certain it will help and comfort many people. You are amazing!

Tumble Fish Studio said...

I'm no more amazing than you. We all do what we have to do when we have to do it, plain and simple. I'm lucky, really, I have one really cool kid that makes me look at the world from a whole different perspective. He's much smarter than me, I just know a bit more about a few things (not many) cuz I'm older.

Tace said...

Wowsers, I can't even begin to imagine going through all of that with a child. It's great that you shared your story, I think it gives hope. When weird things are happening health wise with a family member I'd bet it's oddly comforting to hear of someone else's rocky journey and eventual discovery of what's causing the health issues. Ya know?
You have a fascinating blog, I never know what's going to be here when I visit. :)

AnastasiaSpeaks said...

Thank you for sharing your story. I'm so happy that your son is doing well now and my heart aches for you and him for all the years you all had to suffer through this.

hope505 said...

Thank you for that eloquent account of your experience...it was uplifting to read about your patience and about the way you sincerely care for helping your son BE in this world...

Outstanding Stranger said...

What a remarkable life you have lived and given you beautiful son. He is so lucky to have persistent and caring parents. I pray he has a long and full life and brings you much Joy. Love, Diane

Leslie said...

What a touching and emotionally draining post! I'm so glad you shared this. I personally am dealing with some health problems and they leave me in the artistic doldrums. Inspite of or maybe because of what you've been through, you are able to produce such beautiful, whimsical art. I wish I could glean some inspiration from my situation. I'm working on it...and blogs like yours and Lisa's give off lots of artistic sparks!! Maybe I'll catch fire!
Thanks again for sharing your and your family's stories.
Leslie Burns

Alberta and Ava said...

I don't know how I skipped this post, but I am very thankful and glad I found it today. I've been a special education teacher for 26 years and have taught children with all kinds of challenges, including autism, Asbergers, and seizure disorders. Interestingly, I am also certified to teach gifted students, so your writing touched my heart and soul. This post was very brave and generous and will be a wonderful resource for other parents. Shawn sounds a like a sweetheart, and may I say (without minimizing what you have all experienced) that, as a mother to two young men myself, sometimes I have wished that I could take away thier ability to be sad. I know that pain is necessary, but, for my sons, I wish it weren't!

You're not just a gifted artist, you're a gifted mother.

All my love,

Linda Crispell said...

You may have just changed the life of a little boy with a Mother who has been trying to diagnose him for years.