Thursday, May 9, 2013

Food dyes-Red and Yellow and Blue, OH MY!

Food dyes.  They are the bane of my existence.  When I pick up a product in the grocery store and read the ingredient list, I take it very personally when I see red 40, blue 1, yellow 5 etc...

It doesn't take a scientist to realize that artificial food dyes are harmful.  The fact that the word "artificial" is in the name should be your first tip off.  Food is not supposed to be colored.  I have yet see an apple produce an electric shade of blue on its own.  Instead, food manufacturers are "adding" this to our food to make it more "appealing". Instead though, they are creating a slew of problems such as hyperactivity, behavioral problems, migraines, tumors in rats, etc...

Aidan used to consume food dyes.  I'm not going to lie. I was once one of those parents who didn't read labels until I had to.  I knew something was wrong when Scott and I would notice Aidan in either a daze after ingesting food dyes or completely off the wall.  There were several times we had to leave restaurants and outings because his behavior was so out of control there was no way to contain it.  I remember watching him stand on the other side of the room and run, throwing himself into the couch over and over again.  This could go on easily for over an hour.  It was like his brain was short circuiting every which way and nothing we could do would help.  We literally had to ride it out with him.

After looking up his symptoms on Google, or as I like to say, Dr. Google, I came across a site for "The Feingold Diet".  Here is a link:  I devoured the information on the site and ordered the materials.  Now, I'm not advocating anyone buy anything, trust me, I know times are not great for a lot of people, but the information was invaluable.  If you can swing it, it's worth the investment.  They put out a new grocery list each year but I have been able to hang on to my copy for a lot longer than that.  I just ordered the newest version last year after 4 years of using the older version.

The diet is a guide to eating and buying foods without food dyes and preservatives (BHA,BHT).  There is also a section on salicylates, but for this blog we will stick to dyes.  So what should we do?  Well, first we need to know what these abbreviations, letters and numbers stand for and look like so we can avoid buying food containing them.  So here is a little crash course.
FD&C- Foods, Drugs and Cosmetics, Blue 1,Blue 2,Red 3,Red 40,Yellow 5,Yellow 6
Below is a snippet from the Center For Science in the Public Interest:
Blue 1: was not found to be toxic in key rat and mouse studies, but an unpublished study suggested the possibility that Blue 1 caused kidney tumors in mice, and a preliminary in vitro study raised questions about possible effects on nerve cells. Blue 1 may not cause cancer, but confirmatory studies should be conducted. The dye can cause hypersensitivity reactions.
Blue 2: cannot be considered safe given the statistically significant incidence of tumors, particularly brain gliomas, in male rats. It should not be used in foods.
Red 3: was recognized in 1990 by the FDA as a thyroid carcinogen in animals and  is banned in cosmetics and externally applied drugs. All uses of Red 3 lakes (combinations of dyes and salts that are insoluble and used in low-moisture foods) are also banned. However, the FDA still permits Red 3 in ingested drugs and foods, with about 200,000 pounds of the dye being used annually. The FDA needs to revoke that approval. 
Red 40: the most-widely used dye, may accelerate the appearance of immune-system tumors in mice. The dye causes hypersensitivity (allergy-like) reactions in a small number of consumers and might trigger hyperactivity in children. Considering the safety questions and its non-essentiality, Red 40 should be excluded from foods unless and until new tests clearly demonstrate its safety. 
Yellow 5: was not carcinogenic in rats, but was not adequately tested in mice. It may be contaminated with several cancer-causing chemicals. In addition, Yellow 5 causes sometimes-severe hypersensitivity reactions in a small number of people and might trigger hyperactivity and other behavioral effects in children. Posing some risks, while serving no nutritional or safety purpose, Yellow 5 should not be allowed in foods.
Yellow 6: caused adrenal tumors in animals, though that is disputed by industry and the
the FDA. It may be contaminated with cancer-causing chemicals and occasionally 
causes severe hypersensitivity reactions. Yellow 6 adds an unnecessary risk to the food 

Now, I know that is scary.  I still shiver when I think how much of that stuff went into Aidan's body before I knew better.  However, the results we saw after we eliminated food dyes was nothing short of miraculous.  Within 2 weeks were were getting positive notes home from his teachers.  I remember one note said "I don't know what you did over winter break, but Aidan is doing wonderfully".  He still had some other issues, but we NEVER had another incident of couch tackling.  We were moving in the right direction.  To this day, I can tell when Aidan ingests food dye.  His behavior isn't what it was when he was younger, but he still becomes dazed, out of it and cries at the drop of a hat.  

So what's the cost of this food?  A lot of it is surprisingly affordable.  Things like lays chips are on the diet list as are a lot of other food you find in regular grocery stores.  However, if your kid is a poptart fan like mine is, you will have to fork over more money for organic.  I have found Trader Joe's to be the cheapest for these types of products.

So there you have it in a very condensed manner.  It really is worth checking out the Feingold Diet especially if you are new to an autism diagnosis and even ADHD. It's worth a try and it's good for your entire family, not just our affected children.

Much love....

Tuesday, May 7, 2013

Interactive Metronome Therapy-Music to my ears!

So, I wanted to share the new therapy we are doing with Aidan called interactive metronome therapy.  It has been around for a while and has had great success in children with autism and adhd, but I was unaware of it until the fall of last year.  Better late than never, I say!

As you recall from previous posts, Aidan has a difficult time with coordination.  He had been diagnosed with developmental coordination disorder prior to his autism diagnosis.  His fine motor skills are less than ideal, making things like handwriting a horrible experience for him. Additionally, skills such as riding a bike, a scooter or a big wheel never came naturally.  He just could not do it. He didn't have the coordination or balance. Today, he still cannot ride a bike well, but has improved with his scooter.

Determined to get Aidan "balanced" so to speak, we started searching for therapies that would include some type of balance/coordination treatment.  Scott called me from work one day asking me to take a look at "Interactive Metronome Therapy", and I quickly obliged.  Here is a link:

So what the heck is metronome therapy?  Well, it is a type of therapy that helps children and adults with neurological issues and poor motor function.  Here is a snippet from their website:

"IM is an assessment and treatment tool used by therapists and other professionals who work with pediatric and adult patients with neurological conditions that affect cognitive and motor functioning. IM provides an objective method for measuring deficits and for tracking improvement.

IM is an evidence-based, engaging therapeutic modality that improves cognitive and motor skills. The design of the program ensures that patients recognize progress as it is occurring, increasing their motivation toward therapy and their ultimate recovery. IM is used to improve: attention, coordination, language processing, reading and math fluency, control of impulsivity/aggression"

I quickly found a practitioner in our area, Dr. Vicki Parker, in Ballantyne who owns "The Brain Trainer"  I called and scheduled an assessment.  Aidan's results were what we expected. The metronome test results were poor.  Below are his results:

After waiting 6 months, we were finally able to start therapy.  Wait lists are LONG for therapists.  They are bogged down with more patients than they can handle, so if you are looking for a second career or are just starting out on a path to college, get into occupational therapy or speech therapy.  You will be lucratively employed.

Aidan attends therapy twice a week for one hour.  He does 30 minutes of metronome therapy, followed by 30 minutes of therapy to increase his processing speed and auditory processing skills.  So far he has gone 3 times, and we have seen small improvements at his baseball practices and games.  His moves appear more fluid and he isn't stopping to think about his next step.  He is simply just reacting like the other kids and is doing so appropriately.  He caught several baseballs that were thrown to him from the other end of the field and got a few kids out.  He had NEVER done that before.  He also hit the ball the first time, every time when he was up to bat last Saturday at his game; a new accomplishment.

So are we satisfied?  We really are.  I can't say this will work for every child, because as we know, each child is different depending on where they fall on the spectrum and how severe their impairments are, but for us, we are more than happy.  This therapy seems to really target the coordination part of the brain that Aidan seems to have been lacking his entire life. He will continue with his therapy for the next 8 months (or longer if needed), so I will continue to track his progress.

Much love....

Sunday, May 5, 2013

How it all began-Part 3 "Validation"

We vaccinated Aidan on schedule.  Whether you believe vaccines are a contributing factor or not, I feel it is worth mentioning.  I'm a firm believer that vaccines do contribute to Autism is some cases, and I also believe there are genetic, dietary (dyes, preservatives) and environmental components (pesticides, GMO's) as well.  Am I anti-vax?  No.  I vaccinated my second son, Owen, but delayed them until he was a year old, only did one at a time and consented to only those that he needed for school .  Do I begrudge anyone who is ani-vax? No.  Until someone can figure out what is causing the alarming epidemic of 1:50, I believe everything is a contender in Autism, including vaccines, regardless of what countless vaccine sponsored studies say.

We started Aidan in Charlotte Mecklenburg School District for Kindergarten.  This is where someone other than myself noticed something wasn't quite right.  Aidan was immediately thrown into countless evaluations but  unfortunately had a less than ideal school psychologist.  He disliked her with a passion and after meeting her on several occasions we could understand why.  After going through 3 different teachers by Christmas (they either quit, were fired, or got transferred) we were told to get him out of the Charlotte District and into the Fort Mill School District a few miles away in SC.  Best decision we ever made.

We decided to have him independently evaluated at Children and Family Development in Charlotte (Park Rd).  It was there that he was diagnosed with Developmental Coordination Disorder, LD (NOS) and ADHD (non-hyperactive).  We started therapy and hoped for the best.

As the years went by we had to make numerous dietary changes (future blog).  There were days he seemed okay, and days he would throw himself into things like the furniture.  Eye contact continued to be poor at times and he began to focus all his time building Lego's. The up side to this was it seemed to calm him and help his fine motor skills.  The down side; he wasn't interested in anything else.  His social skills seemed to be lacking and he was unable to play like other kids did.  He continued side by side play far longer than he should have and while he seemed to not mind being around other kids, he wasn't engaged like the other kids.

We then sought out a DAN! doctor (Defeat Autism Now) and found one in South Charlotte.  Here is a link in case anyone is looking for one that lives in the area:  Once we found our DAN! doctor things took off from there.  Aidan was reevaluated and was confirmed to have Autism, specifically Asperger's, now known as Autism Spectrum Disorder (DSM-V).  Now, this may be shocking to some, but I remember when the diagnosis was read to me.  I immediately felt this huge weight had been lifted off my shoulders.  There was much more information shared after that but I can't tell you anything that was said after, "your son has a form of Autism called Asperger's".  The next thing I do remember was walking back to my car with Scott and him asking me how I felt.  I hadn't really said anything yet.  I said, I am so relieved.  Strange, right?  Let me explain.

I was finally validated.  I knew in my gut something wasn't quite right.  I could feel it.  I wasn't crazy, I wasn't overreacting, I was a worrier.  I was RIGHT and now I could focus on getting him well.  If there is one piece of advice I hope to pass on to anyone reading this, it is to go with your gut.  If you think something is off, chances are, something is off.  There isn't a day that goes by that I don't regret listening to all the people who said, "he's fine" in an annoyingly dismissive way.  If your pediatrician says there is nothing wrong and you still feel there is, go get a second opinion, or a third, or however many you need.  Pediatricians are great if your child is healthy or has a minor problem like an ear infection.  If you think there may be a developmental problem, go to a developmental pediatrician, psychiatrist, neurologist or psychologist.  I could have had Aidan in therapy years earlier if I had fought harder for what I knew deep down was the truth.  Don't make my same mistake, but forgive yourself if you did.  It took longer for Aidan to get the help he needed, but he is getting it.  Things happen for a reason and if I did not make this mistake I would not be able to help others not to.

Much love......

Saturday, May 4, 2013

How it all began- Part 2 "Red Flags on FIRE!"

After the clubbed foot issue was behind us we started noticing things with Aidan.  First off, he was a happy little baby.  We used to call him "fat n happy" because he was a chubby little thing and just laughed and laughed.  Things were going well so far.  He hit gross motor milestones with ease, even with his brace.  He rolled over on time, sat up by himself unassisted at 6 months to the day, and even walked early at 11 months.  What was lacking was his fine motor skills.

Aidan had tremendous difficulty picking up small objects.  When he tried to use his pincer grasp, he would keep missing what he was trying to grab and had terrible difficulty manipulating small objects.  I dismissed it though.  I figured, he is young, and I don't let him handle small objects due to chocking risks and figured it would improve on its own in time.  It didn't.  As of today, his fine motor skills still aren't where they should be, but therapy and lots of Lego play has helped significantly.  He does not hold a pencil correctly and his handwriting is not the best, but he is getting better with time.  His writing hand still fatigues easily though.

Around 9 months I noticed other kids his age pointing.  Aidan did not do this.  I know they say you shouldn't compare kids, but I think comparing can sometimes be a good thing.  I noticed all the kids in his Gymboree play and learn class had this skill.  Still thinking it may not be anything to panic over, I waited.  At 12 months, he still wasn't pointing though.  I knew that wasn't quite right.

From early on Aidan was fascinated with all things that would spin.  He would stare at fans until I moved him.  He spun wheels on his trucks and cars.  I put him on a carousel for the first time and he fixated on the gear that spun around allowing the horse to go up and down.  I actually have a picture of this somewhere I will have to dig out.  

He didn't talk.  He babbled, but there was no sensible speech.  I heard what many parents in our situation hear.  "He is a boy, they are slower to talk".  There is slow and then there is SLOW.  We waited.  We waited for 12 months.  Nothing.  We waited for 18 months.  Nothing.  We waited for 2 yrs.  Nothing.  2 1/2 years.  Nothing.  Finally, around 3 years he started to talk.  I had brought this up to his pediatrician countless times when we lived in Pittsburgh   I was told it was normal. *sigh*  

Sensory issues were HUGE!  Aidan hated grass with a passion.  He would scream if we put him in it.  The feel of it on his feet would send him over the edge.  To this day he still is not a fan but he deals when needed.   As long as he has shoes on, he's good.  Sand was another obstacle.  When we put him in it, we had the same reaction.  Screaming.  We carried him for quite some time to the hard part of the sand down near the water during our yearly vacations.  Today, he still doesn't really care for it, but with pool shoes on he is okay; however we still have to sit at the waters edge.  He covered his ears a lot.  He would cover them with loud noises, walking into new situations, when he felt scared, when he felt nervous, when we were somewhere with a lot of stimulation.  He did this for years. Today he still covers them on rare occasions when there is a lot of stimulation   

Eye contact went from good to not so great.  This happened right after his second MMRV vaccine.  They no longer give the MMRV because of the side effects.  We came home from his appointment and he started to immediately throw up and he developed a fever.  I took him back to the doctors and his reaction was reported to VAERS.  It was YEARS before I could get him to look at a camera and smile.  Biomed helped with that. (will post that later).

Aidan cried at classical music.  He had a toy that played a snippet of classical music when he pushed a button.  Once he heard this, he would freeze;  then his lower lip would come out and he would become hysterical.  I tried this with other types of classical music and he had the same reaction.  Today, that no longer occurs, but he had that issue until he was 3 yrs old.  

Coordination.  Yikes!  This was and still is probably the biggest area of difficulty for Aidan both then and now.  He always appeared clumsy.  He fell a lot.  He was unable to catch a ball up until a few years ago.  He couldn't ride a big wheel or a bike.  He appeared, and still does appear awkward in his body.  Today, he still can't ride a bike but we are hoping his new therapy will help with that.  Aidan was diagnosed with Developmental Coordination Disorder prior to his autism diagnosis.  He was 5 at the time.  The label autism was not put on because again, they wanted to wait and see of he got better with age.  He did not.  Three years later we received the "A" word after very poor social skills began to emerge and academic discrepancies were noted; poor in language arts and incredible in math.  He had been teaching math to himself for quite some time at that point.

Aidan still struggles with social skills.  He got better after social skills and pragmatic speech therapy but they still aren't quite right.  He has so much trouble picking up on social cues.  When he is irritating someone he is unable to recognize it so he keeps doing what he is doing.  He still struggles with his speech volume, often talking far louder than necessary and personal space is still an issue.  He often gets too close to people when he talks which puts kids off at this age.  This is year is the first year he is getting picked on, however he isn't recognizing that either.  I get told second hand from teachers and other parents.  I'm not quite sure if he will ever get the whole aspect of social skills, but I'm hopeful.  He is back in pragmatic speech therapy.

Much love.....

On to writing the final part.... Part 3

Friday, May 3, 2013

How it all began....Part 1 (with pics)

I have been asked a lot recently how this all began.  With the rising autism rate (1:50), more and more people are becoming scared.  People want to know if anything precipitated this; most likely in an attempt to avoid becoming one of the many statistics.  I can't blame them.  Shoot, I would want to know myself.  So here goes.....

My pregnancy was BAD!  I was never one of those moms who breezed through.  From the get go I had problems.  I began bleeding in my first trimester which was later determined to be a result of very low progesterone.  To be 100% transparent, my hormones had never been right after I came off birth control pills.  I was given a synthetic progesterone pill,  Prometrium, to take for my entire first trimester.  I later discovered during my second pregnancy this was not the best option and the natural form is a better choice.

Around the 15 week mark I went in for my AFP test.  My results were poor.  It showed that Aidan had an elevated risk for a neural tube defect and I was quickly discharged from my OB/GYN in town, to Temple high risk in Philadelphia, PA.  At 20 weeks I had a level II ultrasound (this was in 2002) which did not indicate any abnormalities.  Whew!  Relief.  Then we moved to Pittsburgh, PA.

I was transferred to Magee Women's Hospital for the duration of my pregnancy.  At 26 weeks, another level II ultrasound was done.  There was silence.  Anyone who has experienced the room going silent during an ultrasound knows how horribly frightening this is.  The tech was squinting at the screen and continued to focus on one area intently. She then said, "I'll be right back".  TERROR!  A Perinatologist was brought in to take a look.  After his inspection I was told Aidan had bilateral (both) clubbed feet.  WHAT?!

From Wikipedia:
Clubbed foot is a congenital deformity involving one foot or both. The affected foot looks like it has been rotated internally at the ankle. Without treatment, people with club feet often appear to walk on their ankles or on the sides of their feet.  This occurs in 1 in 1000 births and boys are affected twice as often as girls.

I was told to get an orthopedist immediately and found a wonderful man, Dr. Jan S. Grudziak out of Children's Hospital, Pittsburgh.  Seven days after I had given birth, Aidan was down at Children's getting his first round of casts.  We decided to use the Ponseti Method to treat his feet instead of the traditional method.  Here is a link:

Aidan went through weekly cast changes for 8 weeks straight.  His casts went from the tips of his toes to the top of his thighs.  Each week the doctor would rotate his feet out a little bit more until finally at 9 weeks they looked perfectly straight   After his last set of casts were removed he had surgery on both feet.  He was put under general anesthesia and given Fentanyl for the pain while he was in the hospital.  His achilles tendons on both feet were cut and lengthened to prevent his feet from turning back in.  After, he went into another set of casts for 2 more weeks then to a Dennis Brown Bar (brace) for the next 5 years.  Aidan was required to wear his Dennis Brown Bar full time until he started to walk which was surprisingly early at 11 months.  After that he was required to wear it only when sleeping.

The process was a success.  He was walking and running just like any other kid.  Then he relapsed.  At 8 years old his right foot began to turn back in and he had to go to Levine Children's Hospital in Charlotte, NC for re-correction surgery which was another success.  Below are some pictures Scott took of Aidan while he was an infant going through his castings.  These pics have found their way on multiple sites which is really cool; even as far as Saudi Arabia! Hopefully it will be helpful for anyone dealing with this defect.  Feel free to share.
And these are on his way to surgery (me & Aidan) and after his surgery in 2010 for re-correction

Now on to part 2.....

much love......

Thursday, May 2, 2013

Celebrating the word "JERK!"....well, sort of.

The other day I received a behavioral note from Aidan's science teacher in the form of an email that most parents dread.  Aidan is a pretty well behaved child who has his moments like all other kids do, but in school he is usually spot on.  I still endlessly brag about him winning the "best manners" award in kindergarten many moons ago.  Notes are something I have come to expect with my youngest one, Owen, who is neuro typical and seems to be a 30 year old man trapped in a 6 year olds body, but for Aidan, this was definitely out of the norm.

So yesterday morning as I laid in bed after my alarm so graciously awakened me at 6am, I checked my email from the day before and there it was.  I could already see the first few words in the email and knew it wasn't a "we just love you and your whole family" email.  The main point of the email read:

"Aidan called another friend from the class a jerk"

First, I had to chuckle a bit at the polite way his teacher interjected the phrase "another friend".  If name calling is flying around, I doubt the friendship is intact at the moment, however I appreciated her optimism under the current circumstances.

I went into Aidan's room where he was slowly getting up himself and asked what had happened in science class yesterday.  Aidan being Aidan fessed up right away.  He doesn't lie.  Like most kids with Asperger's they just tell you the truth whether you want to hear it or not.  Sometimes that can be a great attribute and other times, not so great.  What had instigated the science class showdown was a piece of notebook paper.  Aidan had asked the kid next to him for a piece because he was out but was told "NO!" That response then precipitated the verbal assault; "JERK!".  Immediately after Aidan let that word fly so eloquently out of his mouth, the same kid went to the teacher and told on Aidan.

Now me being a very sarcastic person by nature, I immediately asked Aidan what any mother would.  "Did you then call him a narc?"  He didn't know what that meant but it seemed to be the next relevant follow up question.  Then I got to thinking.  This was the first time Aidan had shot back verbally at another kid besides his brother.  He was able to recognize that this kid was in fact being a jerk, and expressed it. Although Aidan is able to sometimes know when he is being picked on, it is definitely a skill we are still working on.  Like most ASD kids, Aidan struggles with picking up on social cues and teasing from his peers, but this time, he was spot on!  I did a little happy dance then ran to tell my husband (Scott).  We both took that moment in the wee morning hours to stop and appreciate Aidan's recovery process.

Of course I ended up doing the "mom" thing over breakfast and told Aidan he can't call people names, even if they are being unkind.  He understood and promised me he wouldn't do it again in that," mom you are boring me to death with this speech", voice.  However, I have to admit, it was a proud moment being able to celebrate the word "jerk", even if I had to do it quietly.