At Least They're Healthy?

My husband and I often sit and have this conversation.  At least the boys are healthy.  And then we look at each other. Well, they are aren’t they?  We, as a community, are discovering more and more that autism is caused, or at least exacerbated/triggered by other physical issues, issues that need to be addressed, so I guess in that way, no they are not healthy.  But autism is not life threatening.  And that is what we are focused on when we have these conversations. 

Something I feel compelled to share is just how well aware I am of how much worse it could be.  My job reminds me of this daily.  I am a transplant coordinator for an insurance company- and yes I know this may sound kind of hands off, but I assure you, it is not.  I work with Medicaid patients, many of whom are pediatric, even infants, and I form strong bonds with their parents.  I work hard to make sure these little guys have what they need, authorization to get to and from their appointments, to receive their lab work, their scans, their transplants, their follow up care, their medications, equipment, you get the idea.  That is the technical part.  On the other side of that is the part where the moms recognize my voice the minute they pick up the phone and start talking, or crying, so fast that I can barely get a word in edgewise.  The part where the parents are looking for, or begging really for reassurance that their little ones will be ok.  Or in contrast, parents who are dealing with the stress through anger and yell at me, telling me I have no idea what it is like to have a child with challenges.  The blessing in all of this for me is that I am on the phone, not in person.  The phone gives me the distance I need to do what I need to do;   to explain the difficult things sometimes- that they will need to wait, or move their child to a different facility, or change medications.  In the end, these children get what they need- they are ill, there is an established treatment for their conditions and once medical necessity is shown, the insurance pays for it.  If it is an experimental treatment it can be a bit more complex, but often the study will actually pay for it, and if not, the insurance does at times cover it. 

And I understand that these are life threatening conditions.  Ok, I get that.  I go through the medical histories, the lab values, the scans, all of it on a daily basis and make medical determinations based on my clinical judgment.  Here is what irks me- this is not even an option for ANY of the medical treatments available for my children for their autism.  How can this even begin to be appropriate?  HOW? 

I believe with all my heart and also with my brain (which, not to brag, but it’s pretty good) that future generations will look back on this period of history with shame.  Well, for many reasons, but particularly when it comes to the autism epidemic and the lack of action taken to help those affected.   Treating autism as a purely psychological condition is not going to just sweep it under the rug and make it disappear.  The numbers keep growing, and it is not being addressed, not by a long shot.  Google autism definition

1.    au·tism/ˈôˌtizəm/

noun 1.    a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Now, I was happy to see at least habilitative services become mandated in our state this year- ie OT, PT, speech, and supposedly ABA.  HOWEVER, because ABA has not been covered by insurance ever in the past guess what??  There is no licensure for ABA’s in our state.  So even though in theory, ABA done by licensed certified therapists is covered, there are no licensed therapists, therefore, none of the kids can actually have it.  Clever, huh? 

Currently, Board Certified Behavior Analysts (BCBA) are not licensed in the state of Maryland (they are certified nationally). However, a licensure Bill for BCBA’s was passed by the Maryland General Assembly during the 2014 session. It is expected that the state will begin issuing licenses to BCBA’s beginning in 2015.

http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland

see?  Isn’t that nice of them?  Baby steps. 

Anyway, let’s step even beyond that.  Into the space where autism is being acknowledged as a medical disorder.  You know the space where most autism parents live.  Only now are the mainstream treatments listed above being covered by insurance, and let me assure you, that alone is still a battle- when we finally got the boys’ insurance company to acknowledge that they needed to pay under the heading of habilitative services we both almost cried- it took months.  Even the oral medications that are mainstream medications (used off label for studies) we have tried have been covered by the studies we participated in- we had to pay for Jack’s medication out of pocket when we continued it temporarily after the study ended.  Other interventions that are being used in autism- they are considered experimental for sure, but can’t that be said for many oncology therapies?  So to list a few, mitochondrial cocktails, vitamin B-12 shots (well, we got these covered with a nice small $70 copay), hyperbaric oxygen treatments, IVIG, chelation, supplementation, special diets, glutathione, colostrum, you get the idea.  And what about the homeopathic treatments I have been using with the boys since April- we have seen MARKED improvement in Nate, no question, but the costs are killing us.  These are the “options” given to autism parents.  Other than of course symptom control, such as anti-psychotics, antidepressants, anti-seizure medications, etc.  Those are covered by insurance.  To me, it just seems like it would make more sense to treat the problem at its source than to run around putting out fires (symptoms) all over the place.  But parents are limited in what they can do by their finances.  Parents are asked about their finances before they are presented with treatment options.  There is no insurance coverage for any of it, so if you can’t pay, well, you’re screwed. 

So though it may be so that my children are “healthy” in so much as they do not have a life threatening illness, they do both have a condition that severely impacts their quality of life.  It does affect their physical health.  And unlike any other condition out there, medical necessity is not something that can be proven as of yet, because a cause has not been identified, and medical treatment has not been acknowledged as legitimate. 

Once again I ask, how can we limit treatments for a disorder when we cannot prove what is causing it?  How can we call a disorder “mental” when associated symptoms include GI disturbances, immune dysfunction, eczema, food allergies, and seizures to name just a few? 

Autism- Hate and Judgement From a Surprising Source- Other Autism Parents

Autism awareness month is over.  And I really haven’t had much to say this year.  There is a reason for that.  The reason is that I am burnt out, and frankly disgusted with much of the autism community.  I have had nothing nice to say about autism awareness this year, so I chose to say nothing.  It’s funny to watch my progression through autism awareness month- the first year after Nate was diagnosed I took him to the Roar For Autism done by Kennedy Krieger and gathered as much information about traditional treatments as I could find.  The next year, John and I attended the TACA conference, and gathered as much information about cutting edge, non-traditional therapies as we could find.  And this year?  We went to Autism Awareness Day at Sesame Place.  And that’s about it in a nutshell.  My own thought processes do not fit into either Kennedy Krieger’s idea of autism therapies or TACA’s ideas of autism treatment.  I am blazing my own trail, like so many other autism parents.  

And once again why is this?  Because no one can really help us.  No one can really tell us what has caused our children’s autism, or how we can assist them most effectively.  That doesn’t stop people from trying, or judging.  I am sick of it.  I wrote about my disgust with the general population’s lack of autism awareness earlier in April, and received so many responses from other parents who felt just the same way.  And yet, here is the most shameful part.  In many circles, the people who are really attacking each other are autism parents who do not agree with one and other.  Or, on the other side, autistic adults who do not agree with parents “treating” their autistic children at all.  And you know what??  I call bullshit to each and every person who has criticized a fellow autism parent.  We all feel very strongly about our beliefs- of what is causing autism, whether it can be treated, whether it should be treated.  But unfortunately at this point in history our opinions are just that- beliefs.  There is not one definitive answer out there.

See, here’s the thing, I disagree with many people’s beliefs about autism.  I choose not to "go after" them or criticize them for their ideas- although today I will mention them to make my point.  For instance, those who say it is a solely genetic “condition”, one that makes an individuals’ brain different and not less, and that this should just be accepted.  I ask you this?  Why have the statistics progressed in this manner?

How much of a jump is that?  And do you REALLY think that this much of an increase is due to increased awareness?  I mean really?  Because I can promise you that if my boys had the same issues and behaviors and were born 15 years ago, I would have known to have them assessed and get them help.  I found out what aspergers was when I googled Jack's symptoms because I was worried.  So once again, I think that theory is a bunch of crap.  I will say it one more time- there is NO SUCH THING as a genetic epidemic.  Genes take hundreds and hundreds of years to change.  There is no way, if this is solely genetic that we should be seeing this degree of an increase.  Right?  So guess what??  To those who think this is genetic (only), a difference in a person, and that it does not warrant any treatment, but only therapies, I disagree with you, sorry but I do. 

And that is how I do feel, that both genes and environment are at play.  And I feel very strongly about this.  However, I do not shove these beliefs down anyone’s throats.  If you have children with autism sitting next to mine eating a big cheeseburger on a big gluteny bun and washing it down with a big glass of milk (packed with hormones) I don’t lean over and say you are a bad parent and what you are doing to your child is inexcusable.  I keep my mouth shut.  Because it is my BELIEF that nutrition has a huge impact on many kids with autism.  BELIEF.  And it is your belief clearly that it does not.  We both have so called studies we could reference, so let’s not waste our breath.  We don’t have a true answer yet.  Although, of course I think I’m right, ha.

The same goes with supplementation, and other treatments- I don’t tell you that ABA/speech/OT/special education are not enough because there are clearly other physiological problems that need to be addressed as well.  That new studies are coming out on these issues daily and that I feel very strongly that you might look back one day and regret not trying these other interventions.  Nope- I run around my house like a madwoman every day getting the boys’ supplements together while making them a GFCFSF breakfast, and intermittently saying, here swallow this, and here, drink this, and praying that I am helping the boys in the long run.   I don’t tell you “shame on you” for NOT doing this, so why oh why are there autism parents and autistic individuals out there shaming parents who are trying these methods, telling them that they should accept their children the way they are and that we are insulting them by “treating” them. 

I hear stories of kids who have shown tremendous progress with these interventions daily telling their moms (now that they can) “thanks for never giving up”.  This means something to me.

So I am pissed off.  Really mad that the autism community has become what it is.  I don’t just blame us parents, I blame the huge amount of conflicting information that we are all handed and asked to interpret.  We all have to draw our own conclusions because no one else has been able to figure it out.  And we all do this differently.  And that’s not our fault- we are all individuals.  And this is a scary damned thing to have to face, every single day, when no one can really tell you what the right thing is.  What I can blame on us parents is the JUDGEMENT.  We all know what it feels like to be judged to be “bad parents” when our kids misbehave, or have meltdowns, hit themselves, cover their ears and yell, or try to run away from us.  And we know these are behaviors associated with autism and NOT our parenting skills.  Can we maybe agree to disagree about autism causes and treatments for now, and band together and build each other up rather than tearing each other down?  Maybe stop calling autism treatments that are not, as you say “proven”, quackery and persecuting  parents who are truly trying to help their children?  It’s my understanding that in order for a treatment to be ruled out, or considered quackery, one needs to know the cause of the disorder first.  Maybe that’s just me.  We are all doing our best, and we all deserve respect for this.  How can we expect others to become “autism aware”, to have respect for what we all go through, when we can’t even do that for each other?    

The Tightrope That Autism Parents Walk- Treatment Choices and Conflicting Ideas

It is so difficult to know what is right.  Or if there even is a “right” thing.  I am talking in terms of treatments for autism.  It is true that for many medical conditions there are multiple modalities of treatment available.  But autism is unique in the fact that a “cause” is not yet agreed upon.  At all.  We have so many theories- genetics, environment, gut imbalances, vaccines….and then a million other ones that I can’t even begin to name. 

I remember when I had Jack and was still in the hospital.  I felt so conflicted- the lactation consultant wanted me to offer Jack nothing but the breast, the pediatrician told me he needed a pacifier for “non-nutritive sucking”, and the OBGYN that I had at the time told me that I was starving him by not offering a bottle, and that that was why he didn’t stop crying for 24 hours straight (I went to a different doctor for Nate).  Between the contradictory ideas and the hormones I could have punched someone in the face.  I remember thinking, how can it be that complicated, and how can professionals who do this on a daily basis come in here and offer their very different ideas to a brand new mom?  Don’t they know how confusing it is?  Eventually we found our way- pacifier free the whole time, no bottle until 4 weeks old, and once my milk came in, things were a bit better.

And I thought THAT was complicated.  Navigating the available treatments for autism is like walking through a minefield.  We have the behavioral approach, the traditional medical approach, and the “MAPS” or “DAN” approach.  And they are night and day different.  Do we choose ABA solely?  Do we medicate?  Do we give supplements and change their diets?  Do we dress them in weighted clothing and spin them in swings for sensory input?  Who is right?  Thus far, I have chosen a combination of all of these, and honestly, I am pretty comfortable with that.

I think I may drive the boys’ practitioners  a bit crazy.  I know our “DAN’ doctor was like, really, a drug trial- when I told him I had enrolled Jack in his current study.  And when I spoke with the study physician from NIH on Friday and asked her about restrictions on other treatments while on study- she said, why, there are no other treatments known to actually help reverse autism, only medicines to help control behaviors.  Which is true in traditional medicine- ADHD drugs, SSRI’s, risperdol- it’s all symptom management.  I told her he was on B-12, the mitochondrial cocktail soon, the fluconazole, flagyl, etc.  She told me that none of this should matter as it’s not affecting his brain chemistry.  I get where she’s coming from, she even said that St. John’s Wort would not be ok because it could alter brain serotonin levels.  And Nate couldn’t take memantine, the medicine Jack is currently taking- risperdol and stimulants, etc would all be no-no’s.  Fortunately, we have not gone down that path with Nate, as there is no need.  He does not demonstrate any aggressive or dangerous behaviors at this point, thank God. 

So while it annoys me a bit that she didn’t acknowledge that anything we are doing is worth squat, it also works out to our advantage.  Because while she doesn’t consider these treatments worthwhile, she also doesn’t see them as a threat. 

As you know, I am a nurse.  And before I was a nurse I studied biochemistry.  Even though this is an extremely emotional process for me, of course, I do approach treatments from a very scientific perspective.  If I read about something, and the mechanism of action makes sense to me, and it isn’t potentially harmful, I am willing to look into it further.  The bottom line is that the research physician is correct.  Most of the interventions that are being used at this point do not have any “double blind”, formal studies pointing to their effectiveness.  However, many of them do not have any such studies pointing to the idea that they are useless either.  Don’t even get me started on vaccines.  Yes, formal research has indicated that vaccines do not “cause” autism.  But few to no studies have been completed looking at the current theories of how vaccines AFFECT children who already have or are predisposed to developing, autism.  In my opinion, walking around saying vaccines have no effect on autism is just as irresponsible as saying that they cause it. 

What many people fail to realize is that autism research is really in its infancy right now.  I don’t think that anyone has the answers, but many people have many different theories, and because it is an emotional issue, debates become very heated.  We are not at a place where we can point to one treatment, or even cause, and say “Aha!”.  Therefore, my choice remains that I will not put all of our treatment eggs in one basket.

Is It Really #Autism?

This post has been brewing for quite awhile, but with all of the hoopla over vaccines, the "causes" of autism and possible other conditions with a similar presentation to autism I feel like it's a good time to share this.

So here's the thing about autism- there is no absolute test for it, right?  The diagnosis is made by assessment of behaviors, deficits, communication problems.  Parents are urged to complete the M-CHAT which is a comprehensive list of questions about their child at specific ages, and if red flags are there, further assessment is completed by a developmental pediatrician.  Having your child assessed by the school system is not adequate.  They can give your child a disability "label", but this should not be confused with a diagnosis. 

Because there is not a blood test that gives you a definitive diagnosis, people at times question if a child "really has autism".  The bottom line is, if they meet the diagnostic criteria, they have autism.  Could "autistic" behaviors be caused by something else? Good question.  Right now, we treat the behaviors, not the cause- or at least the medical community at large does.  And some children respond to alternative treatments, some do not.  Some parents have seen their children regress into autism, and others have seen the issues all along.

Why is this?  Is it possible that maybe not all cases of what is diagnosed as autism are autism at all?  I think that this is a very real possibility.  I also think that the idea that autism could be an autoimmune disease or at least be regulated by a similar mechanism, makes a lot of medical sense.  So many people with autism have other autoimmune problems, either themselves, or within their families. 
http://www.autismspeaks.org/science/science-news/association-family-history-autoimmune-disease-0

I know that we, as a family, have a history of crohn's disease, rheumatoid, autism, and other chronic autoimmune bowel conditions as well.  I cannot tell you how many other families we know fit this pattern.  This is one possible way to understand the huge increase in autism in recent years- what other disorders have increased?  Crohns, rheumatoid, fibromyalgia, diabetes, celiac, lupus.  These are all autoimmune disorders right?  It also goes back to the idea that there is no such thing as a genetic epidemic.  http://www.medicalnewstoday.com/articles/246960.php

"With the rapid increase in autoimmune diseases, it clearly suggests that environmental factors are at play due to the significant increase in these diseases. Genes do not change in such a short period of time."

http://jcn.sagepub.com/content/14/6/388.short

So if autism might be an autoimmune problem, it makes me wonder, are there other autoimmune disorders that cause symptoms of autism.  For instance....celiac
http://www.celiaccentral.org/Celiac-Disease/Related-Diseases/Autism-and-Celiac-Disease/37/    Is this why the gluten/casein free diet is life changing for some kids with autism and not others?  Could there be underlying celiac disease?

Celiac Disease-Autism Link

• Category: Blog, Signs and Symptoms
• Published Dated: February 18, 2010
• Writen by: katymchenry

The latest statistics say that 1 in 91 children have a diagnosis of autism. At the same time, it is now estimated that 1 in 100 individuals has celiac disease. Both of these conditions have paralleled each other in their increasing diagnosis over the years and recently, parents have been making the link, putting their children on gluten/casein free diets. However, what is behind the association between gluten and autism? Is there a link? Several studies say there is.
An association has been observed between children who have gastrointestinal symptoms and a family history of autoimmune disease as well as language regression (Valicenti-McDermott, McVicar, Cohen, Weshil, Shinnar, 2008). The study included 100 children with autism spectrum disorder. According to their parents, those with language regression more frequently suffered from abnormal stool patterns (40% versus 12%) and 24% of the children with language regression had an increased family history of celiac disease or IBD while none of the children without language regression did.
A smaller study of only 21 patients with autism found that 9 of the participants had an increased intestinal permeability compared to the control group (D’Eufemia, Celli, Finocchiaro, Pacifico, Viozzi, Zaccagnini, 1996). The study does not mention celiac disease, but it is important to note that it is a well known cause of increased intestinal permeability.
We are fairly certain that yes, a link between celiac disease and autism is there. But has it been shown that a gluten free diet might help ease the symptoms of autism? A 5-year-old boy diagnosed with severe autism and suffering from gastrointestinal symptoms was placed on a gluten free diet and given nutritional supplements in a clinical study (Genuis, Bouchard, 2010). Not only did his GI symptoms quickly resolve themselves, but his symptoms of autism also progressively subsided.

And now a little more to make your head spin....
http://www.ncbi.nlm.nih.gov/pubmed/16917400

Untreated celiac disease may be associated with hyperhomocysteinemia caused by a combination of vitamin deficiencies and variants in the MTHFR gene. Abnormalities do not consistently improve with gluten-free diet.  The abnormal findings could result from vitamin deficiencies or variant MTHFR status. Possible clinical implications for patients with celiac disease and hyperhomocysteinemia are reviewed.

Huh, so these people with celiac only improved when folic acid was added to the gluten free diet- and this was due to MTHFR variants.

I just don't know what I think about this yet.  What I do know is that based on some of the genetic issues I have read about with regard to autism, this seems to start tying a lot of things together, at least for me. 

If you recall from past posts, MTHFR mutations have also been suspected as a possible cause of autism.  My son's both have them.  This is confirmed.  (http://jackandnatesmom.blogspot.com/2012/10/more-answersmore-questions.html)
This is why I hold fast to the idea that the medical community is as of yet clueless about what is causing autism.  There are leads like these out there....it feels to me like people are either ignoring or discounting them.  Oh, and look at this....nothing definitively said, but it is something to think about.
http://www.ncbi.nlm.nih.gov/pubmed/15196997

I know many will disagree with me on all of this- but this is not even my opinion so much as me reading data that is readily available.  From reputable sources.  And this is just one of many theories.  That being said, I can see the logic.  Can you? The biochemist and nurse in me just can't let this go.