Thursday, January 23, 2014

So we are not a family of Asperger's and bipolar??

If you remember back to your high school science days (sorry to make you do that) you may recall some fun loving terms like theory, law, and hypothesis.  These terms that we had to memorize and regurgitate on a test were an attempt to get us all to understand one basic concept; Science if forever changing and constantly evolving.  There are only a few thing in science that we think of as a Law, or something that will not change with time.  But these things are few and far between as science advances and integrates its disciplines.  This evolving process is not just true for chemistry, physics and geology, but for medicine too, and with that come some confusing diagnoses, a non-stop trail of different doctors appointments, and the notion that you need to keep an open mind if your family member has a chronic issue. 

Yesterday, I took my son to a leading group of doctors in the Pittsburgh region.  I took him to the Autism Center of The Children's Institute in Pittsburgh which is an affiliate of UPMC Children's Hospital and works in conjunction with multiple universities including University of Pittsburgh, Carnegie Mellon, and Stanford to name a few.  As with any doctor, if you Google the name of their leading physician, Dr Faber, you will see a plethora of love/hate articles about him from multiple different sources.  You will see some people swear by him and the practice and others who swear he is the devil in disguised.  I can't tell you why that is, but I wanted to do is to tell you why we decided to try it out, our experience, and some information that we learned. 

Dr Faber's center is a team of medical doctors that tries to address autism from every angle possible.  They do things like genetic testing, auto-immune responses and processes, brain structure, nutrient levels in the blood, heavy metal concentrations in the blood, overall health and a magnitude of other things. The idea is that autism, like many other conditions, is not just a "mental health" brain issue.  It's a fully integrated disorder that can be multi-faceted.  What the hell am I saying?  Well, we parents of autistic kids know that our kids can be very, very picky eaters (Shout out to Operation IFO).  So then, maybe they are not receiving all the key nutrients they need to have a healthy immune system.  If they do not have a healthy immune system, then he can have under lying illnesses like runny noses, sore throats, etc that can then make some of the symptoms of autism highlighted.  In other words, everything interplays and is connected in the body. 

This interacting thought process completely make sense to my husband and I.  As geologists, we look at the geological processes as open systems that are influenced by everything.  For instance, the continents move, this affects the ocean currents, which affects the weather, which affects the erosion rate, which affect the continents moving, so on and so forth in a cyclic pattern.  So for us, addressing autism in this manner is a no brainer.  Are they trying to cure Autism? No.  They are trying to better understand all the process of the body that are being affect and address them so that our kiddos can have the best chance possible.  This is the why we decided to give this place a try.  Because it was the only place we could find that looked at autism in this light.  But with every positive there is a negative, right?

Pittfall...there is a nine month to a year waiting list to see a doctor in this center.  Why?  Well because they are in such high demand and because they literally are not like any other doctor's office I have every been to. Each appointment is slotted for two hours.  That's right.  You will be in their office for at least two hours and if your appointment goes over because you have questions or something else comes to light, do worry.  There is an hour gap between appointments for just this reason.  Tell me the last time you saw a doctor that did that.  But of course that means they can not see as many kids in one day.  But for me that's okay.  It means that they really get to know you and your kiddos and your family.  I can tell you that I did get our appointment in four months though.  I managed this because you can get signed up for their cancelation list, which I did.  If another family has to cancel then you can take their appointment if the time works for you.  I also called every other week to see if there was a cancellation, and sure enough I happened to call and there was a cancellation that worked for us and in we went.

The other reason as to their long waiting list, is much like our family, if you have a family with multiple kiddos on the spectrum they try to get them all the siblings in to see them within a month time frame.  That way all of the offspring with be receiving therapy/treatment at once and to not offset each other.  They feel that if one is getting help and another is not, then behaviors, illnesses, etc can be transferred back and forth.  Kind of makes sense, right?

Another pitfall, which is truly all in how you look at it, is they sort of expect you to follow through with everything they want you to do.  This can be a wide array of things like blood testing, MRIs, OT/speech therapies, wrap-around services, ABA therapies, diet changes, supplements, etc.  If you don't then they really can't say what they feel like the whole picture is being portrayed.  For us, this makes sense too and is no problem but for many posts I have read to other families it is too much.

So that is who they are and why we what did we learn.  Actually, its too much to state in one blog and I will continue to write about things as we go, but I first want to share two huge things that were unraveled for us yesterday. 

If you are in the autism community, I am sure you have heard of the new diagnosing tool DSM-V or DSM-5 changed its criteria for diagnosing autism and the reasons why people love it or hate it.  This new system eliminated Asperger's, PDD-NOS, classic autism and other such varieties of autism, instead there is only autism.  Just one big ole classification of autism, with a classification of either mild, moderate or severe.  If you are like me, this whole notion confused the hell out of me.  So, my son/sons no longer have Asperger's?  What does this mean and why then does he have this long list of other thing under his autism diagnosis?

Thankfully, this was explained in detail to me yesterday so I can fully understand my son's condition.  Why they changed it was in a attempt to address that each kiddo with autism is completely different from the next.  One might have sensory issues, the other not.  That in essence they are trying to eliminate the cookie cutter approach to the treatment of autism because it doesn't work.  Just because one child as Asperger's doesn't mean that he will have sensory issues and vice versa.  So instead, based on verbal standings, social interactions, obsessive conditions, and other such things, they can diagnose autism and then state the underlying conditions.  For instance, my oldest son has mild autism, with tendency for ADHD, obsessive compulsive, sensory issues, and high cognitive ability.  Does he have ADHD, no not necessarily, but this is how his autism expresses itself.  Does he have obsessive compulsive disorder, no, but his autism presents like that.  Advantage to this system, that no matter where my son goes, to this family doctor, to his OT specialist, to his school, they will know exactly the things that affect my child with one diagnosis, where before they just knew he had autism and figure out the others stuff on their own.  Once it was all explained, it made more sense I honestly understood what autism looks like for my child better than I did before.  I wanted to share this with you because I figured I couldn't be the only parent out there that was confused by all these changes.

The next thing that was extremely eye opening to us was that my husband may not have bipolar disorder.  A yeah, that's right, he might have autism and in fact it is quite likely that he has had undiagnosed autism his whole life.  Part of the process that this center does in genetic testing.  Now let me explain there is not a gene for autism, but instead there are genetic conditions that can really be expressed when autism is found.  For instance, there might be a deletion of genes that is hereditary that causes the body to not produce melatonin, certain hormones that control pain and fatigue and other things like that.  My son has NEVER been able to sleep for more than two to four hours before we started to give him melatonin.  He can run non-stop for hours and never get tired, and has an extremely high pain tolerance.  Remember the knife cutting stuff?  All these things can point to the fact that get might lack certain genes that make the body produce the hormones to allow his brain to recognize he is tired, sleepy, etc.  So what does this have to do with my husband?  Well, if it comes back that he and my other son have this deletion of genes, then it was passed down from one of us.  In adults, this deletion of genes with autism causes for a "bipolar" like expression.  Extreme uncontrollable anger, lack of sleep, obsessive nature on certain things almost like a mania, because the body is not producing the correct hormones that it needs to tell the brain what it should be doing.  And in undiagnosed adults, a high percentage of them are miss-diagnosed with bipolar or manic depression.  What?  That's right, it is extremely likely given my son's symptoms that if he lack these genes, which were probably passed down from my husband who struggles with the same issues, and more than likely my husband also has adult autism.  Now, they are NOT saying that autism is genetic, well not at least entirely.  Having the deletion of these genes with some other factors probably allowed the autism to be expressed.  Confusing, right?  It took the doctor an I about ten minutes of round and round questions for me to get this completely understood, so don't feel bad.  But the big deal for us is, after a few short questions my husband's bipolar disappeared and the recommendation of him to be diagnosed with autism happened.  In other words, I walked in the doctor's office with a blog name that made sense and walked out with a blog name that's one big fat lie!  And for us this makes sense.  I can't tell you how many times we have talked about how much my husband is like the boys or the boys are like my husband, we just never knew the whys and how's of it.  Now we are unlocking those and might have some really awesome answers shortly.

What a day!  It was not what I was expecting on multiple levels, but we walked out with a positive experience and have already gotten our baby an appointment to see them soon.  Whether you believe in this stuff or don't, its always good to know what's out there and to keep an open mind, so I will continue to share things we learn on this journey.  I didn't want to include in all in one post, but I also got a good list of dentists who are specialized in kids with autism around the Pittsburgh areas that I will post and share, a detailed lists of genetic tests that can be done and all the other things that we are learning about brain structure, etc.  Knowledge is the key to anything and what's knowledge if you don't share it!

So about that my blog name....we can't decide to change it or keep it, but I can tell you one thing, margaritas therapy in my home is LAW and isn't going anywhere!


@dkotucker said...

WOW! Just WOW!! You must've been exhausted (both mentally and physically).

Your explanations were very interesting. Thanks for sharing!

Oh...and thanks for the shoutout. :)

Anonymous said...

Great post