My kid has Autism

[award]

Hello All.

I am going to tell you all why I am so absent from the site. My son has a form of autism known as PDD NOS--to clarify what this means, you must know what "the spectrum" means.

Pervasive Developmental Disorder(AKA Autism) is an umbrella term for the spectrum
The spectrum is:

ADD/ADHD(ME!)..........................PDDNOS(My son).........................Aspergers..............................Autism

Did he have this before the KD?

Nope.

Did he develop this right after the KD?

Yep.

Here is our story

Prior to KD, he was a high energy smart kid who drove me nuts, wanted to be everyone's friend and was Mr. Curious. He was classic ADHD--like I was as a kid. No big surprises there at all.

In retrospect, we had two main triggers.
1). at 15 mos he had some vaccines(DTAP/Prevnar/IPV---no MMR), had a fever to 104F, a febrile seizure, and he began head banging 3 weeks later. Subsequently, he had horrible tantrums, poor sleep, extremely hyperactive and irritable behavior, extremely poor with any transitions, little interaction with us, etc.

Mom is a dumb ass (DA) nurse practitioner who doesn't bother to notice he had his shots two days before all of this and that, gee...maybe the headbanging and complete personality changes are related? I mean, we all know(in the field and out) that some kids have problems with brain irritation after certain vaccines, especially if they have a seizure, and particularly with DTaP and for some MMR but we prefer not to talk about "those people". You see, we like to dwell in the good results so tend to ignore those little inconvenient cases of vaccine reactions.

He continues to get all of his shots on schedule

At 3-4 years he begins to recover and coincidentally, he is no longer obnoxious, less hyperactive, and reasonable.

Age 4 years he gets Kawasaki's. He is treated promptly because fortunately, one area DA mom knows about well is medicine, she just tends to ignore all the "non-scientific" stuff. He is sent home without complications.
He turns into a monster. No one knows who this kid is but the talk on the KD forums shows that others complain of the same stuff--some take longer to recover than others....up to a year??
We see various specialists who are unconcerned about the behavioral changes (probably since he is verbal) and we hope for the best.

Mom decides to make this a personal crusade and hooks up with a very sharp, motivated, media savvy attorney who is intelligent and one hell of a fighter. They team up and use their various skills and said Attorney makes Video to educate docs, patients/parents, etc. We hope that it will be a success.

In the meantime.....he continues to run back & forth swinging his arms in circles, no eye contact at all, very little interaction with parents unless he wants something from, he will not play with other kids, he tantrums excessively, and "stims", which is when he clenches his hands in an odd manner every time he's happy or excited and many other oddities. He tries to hurt his sister...something he had never done. He seems to be devoid of empathy and common sense-both of which he had in spades before.

Mom decides to take behavioral matters into her own hands since all the "specialists" in this area are DA's like she is and are inculcated with the Traditional western medicine philosophy and blind to almost all others. She notices that many families who have had KD have another (or sometimes the same child) with Autism or ADHD--strangely coincidental but not common. She decides to research this more and has an epiphany that son is autistic but why? She goes on another crusade to research this and finds that it is the perfect storm.
Genetic vulnerability + environal triggers(vaccines, air, water, food toxins, etc)+autoimmune disease (KD) or infectious disease(meningitis/encephalitis) among other issues can create the perfect opportunity for autistic Spectrum Disorder.

Mom realizes she is a DA, decides to "fix" son and starts Casein and Gluten free diet whereupon son improves by 60% but still needs treatment in order to go to a "normal school" so mom kills herself to get to the bottom of major triggers.
She is borderline insane.......looking for answers and researching current "alternative" treatments and "recovering" her son's autism.

1). Maybe Jenny McCarthy isn't crazy after all?
Very likely she's sane and perhaps villified by the mainstream.

2). Maybe there is a God?
Highly unlikely but hey, we all have our crutch and I sure ain't taking anyone else's away.

Much to ponder............

Mom will fix this, no need to offer condolences.....shit happens!
Sorry about the expletives, I try my best to clean it up for the forum but hey, if you guys get to talk about the existence of the sugar plum fairy then a little cursing can't hurt.
I wish the best for you all.
April

[bethroth]

April,
I am so sorry to hear about your son. I can feel your pain. As a mom of a KD kid that has never been the same since KD I can understand what you are going through. I too have wondered if Greg could have some form of Autism. He is ADHD, He did have a catatonic response to his second DPT. Please know that I respect you greatly and hope for the best for you and your family. Please remember that you will always remain a member of the KD Forum family.
All my best and please keep us posted on your son.
Beth

[Sytze]

Hello,

I suggest that you read the book "an educated decision" by Christina J.Head.

It will probably give you some insight into the problem and it might point you into the direction of a cure (or at least a considerable improvement)

You can buy the book via the web at http://www.aneducateddecision.com/welcome.html

I hope everything will improve.

Sytze

[liquidambar]

Award;
I am sorry.
I blame higher education and the people that are suppose to direct scientific studies but have instead become corrupt.
AND doctors and medical people that see the evidence but remain blind. Not those that have had their education come out and find something else going on. It is not your fault anymore than it was my fault. That was how you were taught in colleger (right?)

If you ever want to compare notes about your son feel free to contact me. My son is now 23. He had full blown autism - stimming-no eye contact-not verbal till the end of the third grade. Then it turned into PDD/NOS and then high school it turned into Aspergers. . He is complex. It is not what people think - they have a brain a complex brain and deep thoughts. My son has a great sense of humor, but recluse though. Highly moral, a gentleman in every way, going to a small community college now. We have been through a lot and I have experience (wish I did not) but oh well. So feel free to ask if we went through the same thing and I will answer with the truth.

[liquidambar]

Or just a shoulder to cry on.
Really!

[award]

I appreciate the support here and to the people who emailed me privately as well.
I wanted to post this when I figured it all out last October but I had to have the pieces together before doing so. At that time, I had seen my 5th or 6th patient with a history of KD and a sibling with ASD/autism/PDD NOS.
My main reason for posting the information is to help anyone else who notices these types of changes with their child. I want them to be able to recognize the more subtle signs of autism and get help for their child ASAP since there is a window of time they are likely to respond to treatment, if they are fortunate enough to do so. Not all autistic kids are nonverbal--this is a misconception. Many kids on the ASD, (autistic spectrum disorders)range can speak and do so fairly well, not just those with Asperger's. My son lost some of his verbal skills but remained fairly well spoken-he just became less adept at expressing himself and became uncommonly obtuse when it came to reading body language and other's emotions.

This also gave me a chance to demonstrate how unbelievably unaware we are in identifying less severe cases of autism--even someone in the medical profession with their own child--and how you can easily allow other medical and behavioral specialists to reassure you, despite your misgivings, because you want it to be true so badly.

But most of all, I want the people who are most active on this site to know about this and to remember this long after I am gone so they can help other parents. Many of you have been very helpful to me and to others and I appreciate it. We may have an ecclectic group but you each have something to offer. So many are very knowledgeable in specific areas and this is beneficial to us all. I am always awed by the rallying behind a new parent and the support many of you provide for them. You are really incredible people.

I don't mean to belittle your personal religious beliefs with my comments....it is my nature to make light of subjects that are potentially explosive with sarcasm. Although I have never experienced faith in an omnipotent being myself, I dont begrudge your desire to do so. Perhaps we can all find a compromise somewhere in the middle. At the risk of alienating other faiths, we needn't sacrifice "our traditional American faith" in God and Christ but could include other's somehow. I see how others might feel the two concepts are inexplicably linked--almost losing a child to a monstrous disease while being delivered by the miracle of your own personal God.

Karie, you are an incredible resource, your sharp intellect, intuition, and keen insight are always refreshing and the legal perspective you bring is fascinating to me, I think many would agree that your strength and perseverence in fighting for this cause is incredible. I for one, like being on your good side! Girlfriend, you are so full of piss and vinegar......I think you rock! Who else could fly all over the country making an educational video for the biggest target audience ever, a disparate group of hapless physicians?! You remind me that feminism is a beautiful thing--a strong but distinctly female force who fights like a mama lion for her children while working with the big dogs, ready to take on anyone.

And Sandy (momcat), you have an amazing complexity--very rational in so many ways and self-educated in the vast areas of KD that sometimes, I feel there isn't anything about KD that you don't know. Your never-ending support for new parents in crisis is unparalleled and completely unselfish. Although many others provide consistent and unconditional support for others on this site, your dependability and empathy go a long way in soothing anxiety and fears--you have a compassion that seems endless. You bring alot to the table in your experience with Paige's extreme version of KD and subsequent cardiac complications, treatments, and everyday life experiences that few can begin to fathom. Your strength is awe inspiring.

Strong women are incredible allies but also make for contentious debaters. This site has taught me much in the lost art of communication as it applies to the internet. We are a family of sorts and in forming this group, we have a bond whether we realize this or not. A bond worth keeping. Like sisters of sorts, with the welcome addition of the few males who add another perspective which, thankfully, is often less passionate but no more or less relevant.

Although I will drop in from time to time, I am mostly concentrating on the spector of autism and recovering my son. In delving into this field, I realize I am biting off the most complex topic I have ever addressed and I am absolutely horrified to know, that in comparison, KD was a piece of cake for me to figure out.

April

[Deniz Yeter]

April,
I am very sorry to hear this, I know how devastating an autism diagnosis can be. However, with behavioral therapy and not restricting your child's social interactions with others (i.e. not institutionalizing your child as many heartless doctors recommend), there is hope for recovery. Please, do not view your child's diagnosis as a final verdict, keep fighting.

This is very interesting to me, in light of the fact that I also had KD as a young child (~1.5 years), and later developed Asperger's. I suffered from hallucinations, obsessive-compulsive behaviors, but I seemed to be able to socialize fair enough. My symptoms subsided around puberty, but I had a remission around age 15 after receiving my first flu shot. I was sick with an unknown febrile disease for two to three months and missed school for it -- which doctors later diagnosed as an unspecified type of mono due to the fact that they couldn't find an actual diagnosis.

I'd also like to point out my mother has fibromyalgia, and after receiving her first flu shot (both of ours contained the highly toxic mercury preservative, thimerosal), she was subsequently diagnosed with chronic fatigue syndrome and her fibromyalgia increased greatly in severity. She also developed the flu for the first time in her life. The next year she received a flu shot again, experiencing the same event. One doctor said it was coincidental, another doctor told her never to get a flu shot again.

The reason I am very interested in this, is because as I've pointed out earlier, I believe Kawasaki disease may be a modern-day re-emergence of infantile acrodynia (childhood mercury poisoning). Children with infantile acrodynia initially develop the acute febrile form, which we believe is indistinguishable from KD. Depending on the severity of acrodynia, additional mercury exposures, or if it was untreated (which the vast majority of cases were during the acrodynia epidemic since there was no accepted treatment at the time) -- children may go on to develop "classical" acrodynia, and later a severe neurodevelopmental form. However, the prognosis is favorable and most patients fully recover without any residual neurological symptoms.

Recently, several researchers have compared this severe neurodevelopment form of acrodynia to the modern-day epidemic of autism, however as many of you know, the mercury etiology in autism is still highly controversial. KD researchers assert there is no association between KD and autism, but this potential relationship has not been studied. In fact, the long-term effects, be they cardiovascular but particularly neurological, are still unknown.

In a review of the VAERS database regarding cases of KD after vaccination, my colleagues and I have identified two cases of KD patients developing autism.

Have any other parents or patients experienced a similar event?

[heather4570]

April,
I am very sorry to hear this, I know how devastating an autism diagnosis can be. However, with behavioral therapy and not restricting your child's social interactions with others (i.e. not institutionalizing your child as many heartless doctors recommend), there is hope for recovery. Please, do not view your child's diagnosis as a final verdict, keep fighting.

This is very interesting to me, in light of the fact that I also had KD as a young child (~1.5 years), and later developed Asperger's. I suffered from hallucinations, obsessive-compulsive behaviors, but I seemed to be able to socialize fair enough. My symptoms subsided around puberty, but I had a remission around age 15 after receiving my first flu shot. I was sick with an unknown febrile disease for two to three months and missed school for it -- which doctors later diagnosed as an unspecified type of mono due to the fact that they couldn't find an actual diagnosis.

I'd also like to point out my mother has fibromyalgia, and after receiving her first flu shot (both of ours contained the highly toxic mercury preservative, thimerosal), she was subsequently diagnosed with chronic fatigue syndrome and her fibromyalgia increased greatly in severity. She also developed the flu for the first time in her life. The next year she received a flu shot again, experiencing the same event. One doctor said it was coincidental, another doctor told her never to get a flu shot again.

The reason I am very interested in this, is because as I've pointed out earlier, I believe Kawasaki disease may be a modern-day re-emergence of infantile acrodynia (childhood mercury poisoning). Children with infantile acrodynia initially develop the acute febrile form, which we believe is indistinguishable from KD. Depending on the severity of acrodynia, additional mercury exposures, or if it was untreated (which the vast majority of cases were during the acrodynia epidemic since there was no accepted treatment at the time) -- children may go on to develop "classical" acrodynia, and later a severe neurodevelopmental form. However, the prognosis is favorable and most patients fully recover without any residual neurological symptoms.

Recently, several researchers have compared this severe neurodevelopment form of acrodynia to the modern-day epidemic of autism, however as many of you know, the mercury etiology in autism is still highly controversial. KD researchers assert there is no association between KD and autism, but this potential relationship has not been studied. In fact, the long-term effects, be they cardiovascular but particularly neurological, are still unknown.

In a review of the VAERS database regarding cases of KD after vaccination, my colleagues and I have identified two cases of KD patients developing autism.

Have any other parents or patients experienced a similar event?

Hi. I am new to this forum as my 19 month old daughter was diagnosed with KD last week. She had received her second Hep A shot Monday. She had a similar, yet less severe reaction to her first Hep A (MMR and DTaP also given at 12 month). On Wednesday she was having high fevers, fatigue, weakness, huge lump in back of neck, stiffness, stopped eating, strawberry tongue, swollen mouth, and various rashes. More importantly, she was sicker and more irritable than I've ever had a child (she's my 4th). On third day we went to ER per advice of pediatrician. After about 6 hours the team diagnosed KD and she was given IVIG on Saturday (day 4 of illness). On Sunday her fevers and rashes were gone and labs greatly improved. She was well enough to come home on Monday and now she's on high dose aspirin. No more fevers or rashes and the red eyes and mouth are dramatically improved. She's eating and playing again but she seems to be having headaches or some other kind of discomfort when the aspirin is wearing off and she is more easily agitated than she was before this. I'm hopeful it's only because she's still recovering and catching up on the many days of lost sleep. We follow up with pediatrician this week, and with cardiologist for second ECHO next week (first one at hospital was normal).
I don't know if the shot(s) caused the KD, but with three other children in the house and no one else having contracted anything it seems it must be more than a coincidence that the very next day after receiving the vaccine is when the KD attacked her. Coupled with the first reaction (fever, lethargy, rash, weakness) I just find it impossible to believe that the vaccine didn't do this to her. Of note, the day before she had her vaccine she was exposed to 2 children with strep throat.
I've reported the reaction VAERS with CDC.

[liquidambar]

What is a Hep A shot for?
How do kids come in contact with this, and how often?

Is she due for any more vaccines?

[heather4570]

What is a Hep A shot for?
How do kids come in contact with this, and how often?

Is she due for any more vaccines?

Hep A is for Hepatitis A. Hep A is spread through contact with an infected person's stool. My older children did not receive these vaccines until 24 and 36 months. New standard is to start at 12 months.

She's completed most of her vaccines except for one last booster of MMR.

[2chihuahuas]

Hello everyone,

I am not sure if anyone will read this as this topic has been dormant since February but after reading these posts I had to respond. I have a 20 year old son with Autism that had Kawasaki’s disease when he was 5 years old. My son was Autistic BEFORE the Kawasaki’s disease but after wards he was much, much worse.

When my son was a baby he had many, many ear infections and colds. He was also asthmatic as a baby and still has asthma. I wondered many times if he had Autism because of his behaviors but he was verbal, he started talking up a storm at 2 years old. Before that he only said one word. I was under the mistaken assumption that if he had Autism he would not speak. This was before the Internet so I really had no way of researching Autism so I was in the dark.

He had pretty typical Autism symptoms when he was little, but I did not understand what was happening. I never noticed any terrible symptoms after receiving any vaccines other than the typical ones they always tell you about, slight fever, sore shot site, irritable.

When he got older he was also extremely ADHD, it was as if he never progressed beyond the “terrible twos”. He was always such a handful, even his grandparents were reluctant to baby-sit him much.

The summer he was five, just before Kindergarten started, he came to me and told me that his head hurt. He had a swollen lymph gland on his jaw line that looked like he had an abscessed tooth, so the first stop was the dentist. Of course that was not the problem. He got much worse and I kept taking him to the family doctor and every time we went the “fever” he had was gone. The doctor thought I was a nut. But as soon as we got home his face would turn red and sure enough he was back to a 102 temp. It wasn’t until he was totally incapacitated with joint pain and screaming that the doctor finally agreed that there was something serious going on. Well, many trips to the ER later and we still did not know what was going on. We live in a small town and NONE of the doctors we came in contact with had any idea about what was wrong with him. After 12 days of being sick we drove him 100 miles to a different hospital and got the correct diagnosis. IVIG, Aspirin and Echos followed.

He really got better fast after the IVIG but his behavior went downhill. He became more of everything, more hyper, more irritable, more non responsive, more head banging, more Autism. I just could not handle him anymore. He attacked me in the grocery store one day and knocked me to the floor and attacked me. He was having a meltdown and wanted something and I had told him no. That was when I went in search of answers, that was when he got his diagnosis. He was diagnosed with Autism, ADHD and Asthma.

I know that he got much worse after the Kawasaki’s and that if he could have avoided getting it he would have had a much easier time during his school years. He will be 21 in a month and lives at home with us. He has a very high IQ but cannot cope with the world.

Susan

[heather4570]

Hi Susan...just curious to know if your son's onset of KD came after his 5 year vaccinations (assuming you did vaccinate him). I have to admit my daughter's behavior since having KD is much worse, (irritable, temper tantrums, easily tired). Since we're just 2 months post KD and coming upon her 2nd birthday I'm hoping she grows out of it. So far no abnormalities on her Echos...thank God. Thanks for posting your son's story and best of luck to you and him.
Heather

[liquidambar]

I know you were not asking me, but:

My daughter had Kawasaki's six weeks after her fourth DPT shot. On her last DPT shot she spiked a temp of 106, passed out and gasped for air

My son had after his first DPT shot had a very high temp and developed a heart murmur. His second DPT shot he spiked a Temp of 106 passed out and gasped for breath. His third DPT shot he had a stroke a few hours later. Six weeks later he developed a high fever that lasted for 2 and half weeks and had a grand mal seizure. Six weeks later AGAIN he developed a high fever I could not get down, had a grand mal seizure and another two weeks of high fever, peeling fingers, rash - but no strawberry tongue and of course no doctor thinking anything was all that serious.

My daughter was one of seven top students in her high school class, she has two degrees, biology and BSN nursing degree. She has been very moody in the past and she is now on antidepressants. She has always been able to hold down a job.

My son was dignosed with classic autism that later changed to PDD/NOS (that means they have a lot of autistic like symptoms but not enough to be classic autism - stands for pervasisive delevopmental delayed not otherwise specific ---- they later changed it again to tourettes and aspergers. aspergers is very high functioning autism. My son attends a small community college and is majoring in electronics. He takes a very light class load. So far he has not had a job, except he does operate the tractors to feed the cows, and rakes/cuts but not bales the hay in the summer. He had delaid speech, lost the ability to walk for a number of months, fine motor skills ruined.

Oh yes he is also an epileptic. Absentee seizures undignosed for years that developed into myclonic jerks that was considered unimportant by the doctors . Even when he had grand mal seizures every once in a while doctors still considered it no big deal. When he was 16 and he fell breaking his nose, almost broke his neck and pulled my arm out of socket as I tried to keep him from falling then at last we had the dignosis of epilepsy and I had to fight to keep him off Depokote ( a seizure medicine known to deplete L carnitine further, very bad for acquired mitochondria problems).

[2chihuahuas]

Heather,

When my son got Kawasaki disease I racked my brain for months trying to make a correlation between his illness and anything that could have triggered it. I did not think about vaccinations because he never had more than a typical small reaction. He is my second child and I did compare him to his sister anytime he became ill or had an issue, she was my “control” since she was neurotypical and very healthy.

I have never felt that vaccinations contributed to any of his problems but this is just my “gut” reaction. He had a lot of allergic reactions to things in the environment, food, smells, chemicals. We would notice his behavior get MUCH worse when he encountered something but many times we could not identify the cause. He got hives one day on his entire body and could not walk for 24 hours until they subsided. I took him to the doctor just to make sure his airway was OK and it was but I never did figure out what the cause was and he never got hives again. He was three years old at the time.

We did find some triggers that caused him problems and once we identified them they were avoided as much as possible. He had BIG problems with blue dye, the kind found in candy and other goodies marketed to children. At one point I tried an elimination diet but had only limited good results. Close observation during the day of the foods eaten and places visited yielded better results. We found that we needed to avoid blue food dye, anything smoked like jerky, any kind of mint, especially Tic Tacs, (one of his favorite things that I still will not buy for him) and strangely, bananas. We also avoided certain aisles at the grocery store (soap and detergent), anything that had chemicals like gardening sprays and my personal pet peeve that still makes me simmer with anger, people with too much perfume and after shave.

Avoidance of these things and others really helped with his behavior but I did medicate him, no one could cope with him when he was not medicated. He still takes meds and will continue to do so as long as we (Me, my husband AND my son) deem necessary.

I truly believe that my son was born Autistic. When he was still in the womb he head banged, he would bang his head against my pelvis 15-20 times in a row several times a day. When he was born the umbilical cord was wrapped around his neck 3 times and he had a low Apgar score. I do believe there is a genetic component as well, a predisposition. Was he exposed to something in the womb in the early stages of my pregnancy or was it just a lack of oxygen?

I feel that my son has a compromised immune system. He had asthma and allergies as a baby and continues to do so. I think the whole thing is a package deal, all related to the other. He was a difficult baby from the day he was born, always cranky and hard to comfort, he would pull away from me anytime I tried to comfort him. I found that swaddling him was the only way to make him happy and I did this until he was 4 months old.

I’ve always felt that he was assaulted by the world around him, the sounds, sights and smells were just too much for him. Daily living was like a war for him.

Truthfully I think that the Kawasaki Disease was just another reaction to something his body could not handle, an environmental toxin of some sort. This world is truly a polluted place. I am sooooo grateful that he did not have any aneurysms, life could have been worse.

I wonder how many other kids with Kawasaki disease suffer from allergies and asthma.

Susan

[liquidambar]

Susan;
It would be interesting to know what your sed rates and C reactive proteins were before and during your pregnancy.

My son's Apgar scores were above average. Not surprising we are athletic people. My son walked at nine months old. Not so after the third DPT shot.

The immune system is shared by the mother and baby.

My children both flew through the MMR shots with no problems, just the whooping cough laid them low.

My children were teen agers by the time the Hep B came around and I refused it since neither was haveing wild sex, taking drugs, or had a job yet working with blood. But when my daughter decided to become a nurse she took the Hep B and it caused high sed rate, extreme stiffness, stomach aches and heart burn returned

I wonder if she had a baby right now if it would be okay????

You would think that the doctors would have stopped it when I was complaining and begging but they did not - they bullied me. Only a vaccine will they do this, if my child had a reaction to peanut butter and we still gave them a spoon full they would have sent us all to prison.