Tuesday, January 31, 2017

Nutrition Research

Pondering, praying, and researching about autism and nutrition for my presentation in March.
Here are some key facts and conclusions:


In 2016, the Centers for Disease Control's Autism and Developmental Disabilities Monitoring (ADDM) reported that approximately 1 in 68 children in the United States has been identified with an Autism Spectrum Disorder (ASD). This rate remains the same as in 2014, which is the first time it has not risen.  --taken from a Google search. 

1 source indicated that globally, autism occurs in 1 out of 160 children--WOW!

Some speculate that the increasing number of children with this diagnosis is due to 1) improved awareness, 2) better diagnostic tools, 3) expansion of diagnostic criteria.

A genetic component and environmental effects such as air pollutant exposure, prenatal infections and dietary composition changes are reviewed in the literature as possible risk factors for ASD.  I was recently told by a psychiatrist that is rare to see a child with an ASD have 3 siblings without the same diagnosis.

The DSM-IV stands for the Diagnostic and Statistical Manual-Fourth Edition.  It is published by the American Psychiatric Association to provide diagnosis criteria for autism and related disorders.  The criteria changed in 2013 to no longer include the "labels" Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).  Autism is now diagnosed as "Autism Spectrum Disorder" with different "levels of severity." 

Autism is defined/diagnosed by 3 different characteristics: 1. lack of social and emotional reciprocity, 2. limited verbal/non-verbal language skills, and 3. presence of stereotyped and repetitive behaviors.  

 Abnormalities of brain structure and function are found in people with ASD.  ASD alter the way nerve cells and their synapses connect and organize info processing in the brain.  It is not known exactly how or why this occurs.  Therapy includes applied behavior analysis (ABA therapy) and sometimes SSRI's, antipsychotics like Risperidone, Occupational Therapy, Physical Therapy and/or Speech Therapy.  

Although NOT required for diagnosis, atypical eating behaviors, limited food selectivity, food refusal, and behavior problems at meal times are COMMON.  Research has been conducted on how this affects nutritional status (vitamin/mineral intake, macronutrient intake (carbs, proteins, fats) and the affects of special diets (i.e. GF/CF, SCD, and others) on behaviors and health.  

Here are my "takeaways" from the research:

*It is very challenging to conduct research on outcomes of special diets.  1) limited funding, 2) limited sample size (some had only 14 children participate), 3) high probability for intakes outside of the testing parameters (i.e. did the kid sneak a piece of cake at an event or get "cross contaminated" while eating away from home?)  Too many variables to expect the subjects to adhere to 100% GF/CF diet for 6 + weeks. Hence, why research on this topic is underfunded and the conclusions are inconsistent.  Celiac disease occurs in 1 out of 110 people, with 6% of the population having some form of gluten sensitivity.  Of course, the study with 14 children didn't yield results!  The sample size was just too small to provide answers.  Double-blind and controlled, it still won't provide the answers we are looking for.  

*Many research studies on typically developing children and those on the autistic spectrum found that nutrient intake (vitamins/minerals, macronutrients) are similar DESPITE limited food selectivity found in children with ASD.  Some research indicates lower intakes of vit D, calcium, iron and fluoride in children on the spectrum.  Others didn't find a difference between the 2.  Keep in mind, these are children who ARE NOT FOLLOWING A SPECIAL DIET SUCH AS THE GF/CF diet.  From my perspective as a Dietitian, that research stands like a red flag to me.  What about the kids who are on a CF diet?  What about their vitamin D and calcium intakes considering any source of dairy is not allowed/tolerated?   Let's look at my son.  Aiden's primary source of fat, calcium, vitamin D, and protein comes from MILK and his vitamin D was LOW despite drinking 2-3 cups each day.  Something to think about and check for!

*Omega 3's--a review of the literature in the Journal of Herbal Medicine, 2015 suggests that "there is limited evidence supporting the use of omega-3 supplementation in clinical practice for the treatment of behavioural symptoms in children with ASD.  However, some studies do show potential for this treatment option in a limited range of behvioural outcomes.  Further studies are required."

From the same review of 6 studies: Omega 3 fats play a vital role in the functioning of the brain and central nervous system.  They make up part of the structure and function of cell membranes.  They are essential for brain growth and development and cognitive function.  An imbalance of omega 6 to omega 3 fats (I will add, this is the "typical" American diet) is associated with neurological and pscychiatric disorders as well as behavior abnormalities in adults and children.  1 study found that 1 gram (380 mg EPA and 180 mg DHA) supplemented in children (age 4-7) for 12 weeks saw improvement in test scores (33%), but the sample size was small.   Further studies have also been critized for their small sample size, low dose of Omega 3, and severity of autism diagnosis.  "Statistically non-significant improvement in hyperactivity and stereotypical behaviors."  "No clinical gains on behavior or developmental outcome measures."  "No significant improvements in autism symptom severity."  This is from 6 peer reviewed clinical, controlled studies/research over the years.    

*Here are MY conclusions based on 16 years in the field of nutrition + a son with ASD:

--Look at the child as an individual.  Does he/she have eczema, chronic constipation, diarrhea, bloating, stomach aches, headaches, symptoms that aren't medically explained?  If yes, get him/her tested for IgE allergies and for CELIAC disease.  If you have autoimmune disease in the family, testing for Celiac disease is a MUST.  The 2 are different tests (IgE and celiac testing)!  If things come back negative, and you still suspect an intolerance, find a local professional who specializes in food sensitivity testing.  He/she can help you navigate the ins and outs of meal planning and see what foods work best for YOUR child.

--If your child consistently misses entire food groups, doesn't tolerate or drink milk, and/or has a very limited selection of foods he/she will consume, get their vitamins/minerals checked.  Again, Aiden was a little low in vitamin D and iron DESPITE eating fortified cereal every morning (high in iron) and 2-3 cups of milk a day (a rare source of vitamin D).  This is a blood test and we had to do it twice :(.  I also had Aiden's protein level checked, which I expected to be normal given his intake of milk (24 grams protein daily) and nuts (7-14 grams daily).  It was :).  Remember, kids don't need as much protein as adults because they have less body weight, and protein calculations are based on weight.

--A daily multivitamin without iron is appropriate and safe for most kids.  High doses (>100% DV) can cause GI upset and diarrhea in some, so please read nutrition labels.  Avoid food dyes and processed soy, wheat, and corn in the vitamin you choose, especially if your child has food allergies/sensitivities.  If your child doesn't get adequate calcium, they will need to take a separate calcium supplement once or twice a day. If the vitamin/mineral intake blood testing is low, your doctor will prescribe higher doses of that vitamin/mineral supplement as needed.  Please don't do it on your own.  Again, high doses can cause GI upset and intolerance, and some are stored in the body and completely unnecessary--or harmful--to consume in high doses. 

--Although we all need carbohydrates, protein, fat, vitamins, minerals, and water, how we obtain them can very, very different for each of us.  Do some investigating, and figure out what is best for YOUR CHILD.  For my son, an unrestricted diet with a daily vitamin/mineral supplement + Omega 3's is what is best.  For yours, it may absolutely be a gluten free, lactose or casein free diet that is free of dyes and other food additives.  Keep in mind, the more restricted the intake, the LESS likely he/she is getting the vitamins/minerals they need.  If your child is growing adequately on the growth charts, it is likely they are getting adequate macronutrients/calories, but they may still be missing those vitamins/minerals that help our body function at its best :).

--If yous child is losing weight, fluctuating in weight, has chronic diarrhea/constipation/GI symptoms, it is time to see a professional.  Nutrition affects growth and development, and chronic, severe depletion may have lifelong consquences to health (like my former roommate who still has bone pain related to severe restrictive eating patterns that lead to depleted bone minerals).  



Thursday, January 26, 2017

Educational Autism

Mentally done.  Physically done.  Breathe Marian just breathe.

Here I am sitting around a table with 6 other women and trying desperately not to weep.  We are in a good place with Aiden.  We don't live and breathe autism anymore.  Yet today, as I heard the psychiatrist talk about Aiden's struggle to fit in during gym class as she observed him, I lost it all over again.  I was that kid who felt alone and awkward in school--like I didn't quite belong.   Today, Aiden was that kid.  Gratefully, a confident kiddo took Aiden and said, "Come on Aiden.  You can do this!"  Shouldn't we all be like that?  The person who makes everyone feel like someone that matters?  I wish I knew the kid and his parents.  Perhaps I do.  If names could be exchanged, I would be calling that mom asking to hug her son and tell him how much I appreciate him for what he did.  

So that is how the meeting started.  Aiden is struggling to fit in, he is struggling to learn how to read, he is struggling with math, he is struggling.  What do I do now???

Yesterday we officially said "goodbye" to three years of therapy.  The therapy I worked so very hard to get for Aiden.  Yet, it was the right direction.  Seasons change.  Needs change.  Life CHANGES.  This change was right for right now.  So, what is next?  Will a tutor help Aiden?  Will additional help in school make a difference?  That was the purpose of our meeting today.  What is next for Aiden?  What does he need in place to LEARN?  

The boys were with me today.  The meeting went long.  Avery pooped and started writing all over the place.  He was tired because he didn't get his nap.  I put too much on our "plate" today.  I was pretty tired myself.  I haven't been sleeping well.  So much change.  Ashton started to talk back.  Austin was rude.  Nothing got resolved at that meeting, and I walked away feeling defeated and lost.  

What good came from THAT?!  Wasn't Aiden supposed to get an "educational" diagnosis so he could receive more help at school?  Why in the world is that necessary when he has a medical diagnosis and document after document that says he has autism.  Teacher "speak" went over my head and I was lost.  Too tired to fight back.  Too overwhelmed with my kids behavior.  

Stick a fork in me I'm done.  For now.  This momma doesn't quit!  Tomorrow is a new day!  

Sunday, January 8, 2017

Transitions

2017 is another year of change, and I'm happily embracing it!

Abe and I fasted and prayed today about the next stage of our lives.  We've had a life changing event every single year of our marriage, and we knew this year was NOT going to be the exception.  We knew there were changes ahead, and we wanted some guidance.  Specifically, about our home.  

11 years later, we are going to sell our home.  It feels right.  After the challenging years we've faced, it feels like a healthy new chapter for us.  And change #2....

Due to our rising income, we are now obligated to pay a co-pay for Aiden's therapy.  Since discovering this, we have decided--after 4 years--to discontinue therapy sessions.  It was the right time.  Aiden's struggles continue to be academic and sensory, and I just don't feel like the hours Aiden spent in therapy were accomplishing the things we were hoping for anymore.  I'm so grateful for the first 3 years we had.  Aiden flourished quickly.  He learned to speak, communicate, and socialize through that program, and I'll never regret how hard we fought to get him the therapy in the first place.  It was worth it!  

So, we move on from after school hours and continue to work with the School District to help Aiden learn the best he can.  This month we have an appointment with the school psychologist to determine what is best for Aiden academically.  I pray that Aiden will get all the help he needs to be successful, to catch up on reading, and learn basic math.  

In the meantime, Aiden is starting to take more responsibility for helping out with his siblings, holding doors open for people on his own, and overall, being a genuinely super great kid!

I have faith as we move forward!  I'm actually really excited for what is to come!