Sunday, December 23, 2007

Autism... the new ADHD? Plus my theories on SIDS

I want to start off by apologizing for not updating on Chris' tests sooner. I've been insanely busy as I'm sure most everyone is this time of year. His tests went well, we will get the results at our follow up on January 4th.

Autism. Let me preface with saying that I do not, for one second beleive that Autism isn't a very real thing. I truly beleive that my 5 year old could be the poster child for what I call "Autism intervention" in that I beleive that his problems being recognized extremely early and treatment begun before the age of 18 months saved him from "Autism". He is in a mainstream school, in a mainstream class and functions very well in that environment. We weren't always sure he would and 3 years ago we weren't sure he would ever do the things he does now. I hold a dear place in my heart for the people that helped us get where we are with him, his therapists..... I believe they saved my child and my family.

Having said that. The number of children being placed on the "Autism spectrum" is up over 200% in recent years. There are many theories for that, including the theory that there are now better ways to diagnose Autism. But I ask the question, how can you truly diagnose a condition when no one understands what it is, where it comes from, and a condition that has such a broad range of symptoms? You can't. Which is why I believe that we are on the cusp of a new "ADHD era".

What do I mean by that? People my age will likely remember many children in school going to the nurse every lunch hour for pill time. Kids who left for lunch rambunctions and returned calm and collected having received thier dose of Ritalin mid-day. Teachers began "diagnosing" kids who were having even the slightest bit of trouble concentrating or learning as having ADHD and sending parents to pediatricians for pills. Pediatricians began prescribing these powerful pills to almost anyone who walked in the door with a "teacher diagnosis" in hand. These kids, as Ritalin and ADHD became uncool and taboo lived, and to this day continue to live with the stigma of having "ADHD".

How many of these kids really had ADHD? How many of them had other disorders that were not looked into such as oppositional defiant disorder, learning disabilities, metabolic disorders, chemical imbalances, even abuse and neglect in the home or peer abuse situations going on? How many of them continued to live with whatever was plaguing them under the Ritalin fog?

The powers that be seemed to see the forest for the trees in the 90's. New ADHD cases suddenly dropped off as Pediatricians finally began refering these children to psychologists and teachers were no longer allowed to suggest ADHD drugs to parents. Suddenly, with the diagnoses of ADHD decreasing, diagnoses of other "disorders" climbed. The most startling increase? Autism.

There are many theories on what causes Autism. Some beleive it is the preservatives in vaccines, some beleive it is birth or prenatal oxygen deprivation or trauma, some beleive it is food sensitivity or allergy, some beleive it is a metabolic disorder, some beleive it is imbalances of certain chemicals and nutrients, and some beleive it is a glitch or damaged brain. The list goes on and on. Basically, no one really has much of a clue what causes Autism. A lot of parents with Autistic children blame vaccines. I've spoken with one mom who told me "he was FINE until he got his 1 year shots, then suddenly he turned into THIS!" I can see her point. When something happens to your child, say..... he shows you a cut on his finger, you are naturally going to ask him what he was just playing with that cut his finger. What you may not realize is that he cut his finger weeks ago and has just re-opened the sore....

My theory on Autism is that some children are sensitive to something, heck some children are sensitive to everything. My own son had such extreme dry skin (still does) that for the first 3 years of his life I had to MAKE any soap that touched his skin or clothes by hand, on the stove or he would break out in eczema patches that we couldn't get to go away. About a year later I really started to think about that. What was the difference between commercial soap and the soap I made? Heck if anything my soap could have been more harsh because I wasn't as good at regulating the lye to oil ratio as a factory would be with all it's computerized equipment.

Jacksen also had great aversions to food. He ate next to nothing, living mostly on fresh fruits and vegetables. It was about all he would put in his mouth. Then, someone said something to me that was the turning point. She said "Kat, you know when you are pregnant and you have cravings and aversions? Well, you know that's because your body is telling you what it needs and is telling you what it doesn't feel is right for it"....

From that day on, I realized that kids don't eat like we do. They haven't developed the horrid habits we are like clearing our plates or eating food just because it's offered. Kids eat on the "pregnant woman" diet. They, being naturally more in tune with thier bodies, want to eat what thier body is telling them to and balk at or refuse food that thier body is telling them not to eat.

So now I had 2 clues. It was my job to put the puzzle together. What was my child telling me was the problem? What was in commercial soaps and un "natural" foods that my child was telling me he couldn't tolerate? Preservatives.

But why are autistic children seemingly fine until toddlerhood? They are exposed to preservatives in some form pretty much since birth? Well, in my opinion it works on the same principal as the alchoholic who doesn't destroy his liver with his first drink, but rather over a period of months or years of chronic drinking. Children who are sensitive to preservatives don't damage thier brains the first time they are given a bath with Johnson's baby wash, but rather over months and years of exposure to preservatives. It makes sense to me since Autism is a seemingly progressive disease, it doesn't generally happen overnight but slowly, over a period of time. The changes are impossible to detect early on, but as time goes on they become more apparent as they increase in severity. It is our job to put the clues together. What is my child sensitive to or allergic to? We have to do our own scientific experiments and LISTEN to what our children, whether they can speak or not, are trying to tell us.

Just some food for thought. Moving on.

SIDS. It's a 4 letter word that strikes terror in the hearts of parents. We all likely know someone who has put thier perfect, seemingly healthy baby down for a nap or to bed for the night and woke up to find thier little lifeless body in the crib. SIDS is so terrifying because it strikes babies seemingly at random. Sneaking into the nursery and snatching them from thier dreams. Autopsies show nothing out of the ordinary and no cause can be determined. How can this be? How can that child have died and every body system be perfect upon examination?

But there is one organ that can play these sick little tricks. One organ that you really can't know if it was working properly after the fact. The heart. I believe that SIDS is actually a heart condition called Long QT syndrome. Long QT syndrome simply means that for some reason there is a delayed time frame between the Q and the T activities of the heart during the beat cycle. It does not cause any murmurs, it does not cause any blood pressure abnormalities, cyanosis, sweating, chest pains, or any of the symptoms of heart trouble. People with Long QT syndrome sometimes live into thier teenage years or even adulthood only to be found dead in thier beds without having ever been sick. Why? People with Long QT syndrome are at great risk for fibrillation for no apparent reason. The heart, deciding that at this moment to finally realize that the distance between the 2 waves is too long tries to compensate by beating fast and irradically. Soon, it can't keep up with itself and goes into what is called Fibrillation. Erratic, non productive beats. Finally, unable to right itself it simply gives up it's fight and stops.

I truly beleive that most children who die of SIDS could be saved with something so simple as an EKG at birth. An EKG takes less time than the hearing test all newborns in this country get and can detect Long QT and other irregularities in a couple minutes, start to finish. Children diagnosed with Long QT could then be fitted with internal defibrillators, devices that sense when the heart starts acting erradically and step in to give it a mild shock back to reality.

Doctors seem to be catching onto this possibility as recently, when I took Nathan for his echocardiogram I was asked in the history questionaire if there was a family history of SIDS or unexplained death. I asked why and they said that there was a heart problem that can cause this........ Long QT.

If you have a baby, ask your pediatrician to do a simple EKG. It can be done in the office in a few minutes. Even if you have to pay out of pocket, it's worth the knowledge.


katie said...

I totally agree that ADHD is over diagnosed- esp. in schools today. Schools that do NOT provide the correct outlets for children to release their energy seem to have more children labeled as ADD or ADHD. Face it, some children are more energetic and rambunctious than others; and without the proper outlets and mechanisms to release all that pent up energy, sure, they're going to figet and not concentrate well. I truly believe that maybe half or more children diagnosed with ADD/ADHD truly do NOT have that condition, just little enviormental factors that need to be tweaked- just like your making the saop.

Since you've done your reading on Autism (Kathryn isn't vaccinated because of that. we're waiting until she's five! but I tend to freak myself out by doing too much research-first time mom syndrome), is there ever a safe zone? Like, if they havent' been diagnosed by a certain age then the chances of them having it drop?

maureen said...

As a primary school teacher in Ireland I agree with all you've said re. Autism and ADHD. I've worked as a special needs teacher for the last sixteen years in mainstream schools. These problems are the same throughout the world and will only be rectified by pressure from concerned parents.
Your comments re SIDS are very true. I lost my wonderful seemingly healthy athletic 21 year old son 4 years ago and almost his younger sister last July (SHE WAS SAVED BY HER ICD)to Long QT Syndrome. His post mortem examination was completely normal. It was only through family screening that we discovered that his father and younger sister have LQTS. She has been assured that her babies will be tested at birth.
It shouldn't take the death of a child to guarantee this test. I agree that an ECG should be done at birth though the medics will say that not all cases will be picked up.....I know that the QT prolongation can be intermittent.
Most studies suggest that LQS or other Channelopothies may be the cause of 20% of SIDS deaths. Without testing how can we know?
At least we know the cause which is not the case with Autism or ADHD. I will never stop working to try to save others from going through the horrific devestation that has happened to us.
Although I'm still grieving the death of my son I'm grateful for the wonderful 21 years we had together and rejoicing in the presence of my daughter She has just turned 20. To think we could quite easily have lost them to SIDS......!!!!

Cordell said...

Actually, Long QT syndrome affects more than just the heart; LQTS patients frequently suffer from epilepsy as well. It also predisposes patients for autoimmune diseases like lupus or type 1 diabetes. Something akin to LQTS can be induced metabolically with no associated genetic channelopathy, brought on by acute physiological or psychological stress such as sustained hypoxia/metabolic acidosis, infection or maternal deprivation. A paper will be published later in 2008 explaining the mechanism behind SIDS and how to prevent it. This paper may shine some light on the mechanism behind autism too. Interestingly, the dry, itchy skin of your autistic child is consistent with this explanation.

Rcktgirl said...

I came across this page because my daughter was diagnosed with ADHD in early 2008. Her first 5 years of school were a total nightmare and it was during the 4th grade after years of nightly battles to do homework, stop losing homework, turn in homework that was done but mysteriously got lost in the car on the way to school, etc etc (this list is much longer) that I sat in my bedroom one night and had a moment of clarity. I realized that it could not possibly be true that in every household in america a parent spent every evening engaging their children in tearful and emotional tirades just to do regular daily tasks, then collapsed into bed exhausted wondering where they went wrong as a parent. So yes, you could say I do get tired of defending my daughter's diagnosis to the many, many people (friends and family included) who believe that she's just "being difficult" or "lazy" like her 4th grade teacher suggested... the same people who believe that there is really no such thing as ADHD.

But, the real reason I am commenting is because after the diagnosis, our pediatrician performed an EKG before prescribing any medication. He ensured us that the "extra beats" he found were probably nothing, but referred us to a cardiologist to be sure. After several appts and many trips downtown, we found that she has a Prolonged QT Interval. The Electrophysiologist confirmed that she does not have LQTS but her QT Interval is on the borderline between Normal and LQTS. She currently takes calcium and potassium supplements to increase her electrolyte levels because she does not eat dairy and only gets calcium from supplemented food that I buy. She had previously suffered debilitating leg cramps quite often which several doctors dismissed as "growing pains." Maintaining the electrolyte levels decreased her QT interval nearly 90 milliseconds, which brought it to the borderline stage and it completely stopped the leg cramps.

I agree with your opinion on SIDS after the intense research I did about Long QT Syndrome. My daughter plays competitive sports and having a QT Interval at 540 milliseconds (normal is < 440ms and anything over 460ms is considered dangerous) made her a walking time bomb. We would never have known had it not been for the ADHD diagnosis that led to the first EKG. I do believe that all parents should have an EKG done on newborns, even if they have to pay out of pocket. Additionally, LQTS is a hereditary condition and if found in a child, all immediate family should be tested.

Because my daughter has a Prolonged QT Interval, the doctors recommended that she not take any type of stimulant medication for her ADHD. We are managing her issues with private school (extremely small class size), counseling, herbal supplements, and competitive sports that allow her to get her energy out. I'd also like to mention that knowing is half the battle. Now that she recognizes this is just her life, it makes it easier for her to recognize when she is having a particularly bad day. She's in 6th grade now and is able to tell me when she's struggling with attention or her mind is racing.

I always remind people that no one knows the children like the parents. I get frustrated when I think back on the many doctors, teachers, and even family members that just dismissed my concerns and told me that I simply had my hands full. 2008 was a difficult year dealing with new diagnoses of ADHD and Prolonged QT Interval, but our life now is actually peaceful each night. My daughter gets personalized attention in school and has teachers who keep a mindful eye on her distracted behavior. She has made the honor roll for three straight quarters... something no teacher at her old school would have ever believed when they threatened to have her repeat 4th grade because she was failing more than half her subjects.

No one knows the daily struggles of ADHD like the parents on the front lines. So please reserve your judgement about ADHD kids. And though behavioral and environmental modifications have helped tremendously in our case, the Electrophysiologist acknowledged that the day may come when she will need medication and we will have to weigh the risks vs the benefits with her heart condition. I think that there are probably some parents out there who medicate their kids because it is easy, but I think that is rare. I believe most are parents like me who have tried every other conceivable idea to help their kids just make it through the day and find themselves at the end of the rope. I used to be one of those judgmental people who believed the parents wanted an easy out. I secretly shook my head at a co-worker who had 3 kids all on medication. I had no idea until my own struggles exactly how real of a problem it is. And it never occurred to me that my brother who 35 years ago was told he was hyperactive and nearly taken out of school, probably had ADHD also. We realize now, it is very prevalent throughout our family and it is a very real disorder.