Friday, September 13, 2013

Our Journey With Eva



I am writing my story here on my blog. In my search for answers over these past few years, I have found it so helpful to read the journeys of other moms. There is so much mixed advice out there. The doctors and medical professionals who say there is no connection between diet and behavior, and then there are the passionate stories of mothers who say that there are things that can be done to help your child. The road is different for each of us, but it is my hope and prayer that others may be encouraged by some of the things I have discovered along the way- things I wish I had learned and been able to put into practice much earlier...

We've been traveling down a hard road with our 4 year old. Although as a baby she was similar to the other children (natural birth, breastfed, no vaccinations), sometime after her first birthday, my mother's heart became concerned. Eva was different. The biggest difference we saw was Eva's delay in speech. At age 3, she still wasn't talking. She had trouble falling asleep and staying asleep and always seemed to sleep in a restless state. She would wake up extremely agitated. Because she couldn't speak, she had to show us what she wanted, thus getting into lots of trouble, and I mean lots. She also developed eczema patches all over her body, particularly on her face, from infancy on. She has always been a good eater, although she tends to shovel her food in and doesn't spend too much time chewing.


She walks to the beat of her own drum. She doesn't like clothes touching her skin, or hugs or kisses for that matter. She snips and shreds and tears and takes things. If you can't find it, just check one of Eva's many bags she lugs around- it's sure to be there! She exhibits toe-walking and w-sitting. She either loves people or greatly dislikes them. She thrives on routine, and we generally manage okay at home, but take her to new surroundings, and she melts. Her senses become overly stimulated and a different child emerges- one that babbles, drools and falls apart or becomes a little wind-up toy that cannot be stopped.

In God's providence I met a new friend (all the way from Indonesia!) who had a son with similar symptoms. She opened up my eyes to see that Eva had a lot of sensory integration issues. I still didn't know what was causing it, but it pointed me in some direction. I really wanted to have her tested, but didn't know where to go. No one seemed to be able to give me any answers.


At age 3 1/2 we put her on Juice Plus because our whole family began taking it, and we saw a lot of improvements in her speech as well as her eczema clearing up a lot, although not completely. (I later learned from Dr. Sears  that high levels of antioxidants are very beneficial in treating autism/behavioral issues). A few months later, we had a family over for dinner and they brought store-bought cookies for dessert. While the older children played outside, my little girl was given several double stuffed mint Oreo cookies to keep her happy. The next 3 days Eva didn't talk. It broke my mother's heart. She was back to pointing and nodding. It was like she was locked up inside of her head and couldn't express herself. After doing extensive research on the Internet, I realized that she was extremely sensitive to food dyes. We already knew that sugar made her aggressive, now I had another piece to the puzzle... Food coloring is found in so many products, even hand soap (think of the pink soap in all public bathrooms!). Thankfully we don't consume these products often, but now I am even more vigilant.


Fast forward a few more weeks, and I was visiting another friend who's children have some severe food allergies. I mentioned to her my struggles and how I feared that Eva might have autism. She pointed me to some books she had where children with autism and behavioral issues were healed by going on a gluten free, casein free diet. Although I had researched gluten allergies, I had only come up with stomach issues and digestion problems. Now I had new things to look into. I was excited to finally be closer to some answers.


I  read everything I could get my hands on at the library on autism. I began by looking on Amazon and reading the reviews people wrote, then tried to find them at my local library. I highly recommend the book "The Autism Book" by Dr. Robert W. Sears. (It is also very reasonably priced for what you get). I really like his biomedical approach that focuses on diet changes and supplements that often cause dramatic improvements. His book is a very thorough, easy to read approach to treating autism and related behavioral issues- steps parents can work through without a prescription.  I came away realizing that nutrition plays a big part in developmental and neurological/behavioral disorders.

According to Dr. Sears, the single most common medical problem shared by children with autism is food allergies. Most children are helped by going on a GFCF (gluten free, casein free) diet. According to this theory, there are 3 distinct ways that food proteins can contribute to autism: 1. through direct allergic irritation of the intestines 2. through internal allergic stimulation of the immune system and 3. through chemical effects on the nervous system. (The Autism Book by Robert W. Sears, MD FAAP, page 178) He describes all of these in much more detail in his book.


After reading Dr. Sears' book, we placed Eva on a gluten free, casein free diet- cold turkey, no easing into it. I figured if this was causing her behavior problems to be worse, we'd just get at it. Needless to say, the next week was probably the worst week I ever had with her. Apparently she was having die-off symptoms, where the gluten/casein was actually being released into her bloodstream. She also had the worst flare up of eczema I had ever seen on her. I stuck with it, and a few days later a much sweeter child emerged. We were used to a monster child every morning and about a week after the diet changes, Eva walked into the bedroom where I was nursing the baby, smiled and kissed me on the cheek. I was shocked! Another thing we noticed shortly after this is that she actually left her sleeves down. This may not seem like a big deal, but all of her life she had been either taking her clothes off or hiking up her sleeves as far as they would go up. Overall, she was much more sweet and compliant. Her speech also improved, as did some of her cognitive skills. For the first time she recited colors, some letters and even learned how to write Eva and Mom. I was thrilled! Her eczema has completely disappeared as well.

Another mom got talking to me at church a few weeks later and told me about a place called Brain Balance, a place a friend of hers was using with her son. She emailed me a coupon for a much discounted rate and I called immediately and made an appointment. At Brain Balance they do extensive testing on 2 different days, one on sensory-motor skills and the other day focusing on cognitive skills. After that we met with the director for over 2 hours, going over the results they found. I was so grateful to finally be in a place where someone understood what was going on with my daughter. Although they don't like to label your child with a diagnosis, we came away realizing that she fits the criteria for PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). This means there are enough autistic symptoms and developmental delays to warrant therapy, but things aren't bad enough to actually diagnose autism yet.. It's on the same spectrum. Although she is 4 1/2 years old, she was testing at a 2 year old level, in some areas even lower. She has retained many of her primitive (infant) reflexes, has weak core muscles, has heightened sensory issues, auditory processing issues, and many visual processing delays. We came away feeling overwhelmed, but at the same time very hopeful that all of our daughter's problems could be worked on and resolved, given the proper therapy. And yes, therapy comes with a hefty price tag! I was also very pleased with the fact that they will do blood work for Eva to test for food allergies and that nutrition is a huge piece of their therapy. I am hoping she is not allergic to eggs, nuts and /or corn, which are the other common allergies seen in these children.

I came home and read the book "Disconnected Kids" by Dr. Robert Melillo, which I found very insightful. He is the doctor that founded Brain Balance and set up their program. Dr. Melillo encourages parents to try many things at home. I am slowly beginning to work with Eva, although it hasn't been as easy as I had hoped. She is very easily distracted and has a hard time doing what I ask. One of the things she has to do is wear an eye patch to strengthen the weak side of her brain, building up to 2 full hours a day. I'm lucky if I can get her to keep it on for 5 minutes! The one thing Eva really enjoys is the mini-trampoline. Physical exercise is very important for all of our children, but especially for those with developmental delays.

Having children has stretched me in ways I didn't think possible. I see before me a beautiful little girl with so many strengths- she is focused (although not always on the right thing), she has a compassionate spirit that hates to see others hurt or sad, and she has an exuberance about things that she loves- like bags, play-dough and frozen cookies. But there are also many days filled with heartache and tears, frustration and exhaustion. We pray daily that the Lord will heal her completely so that she may come to know and love the Savior. We long to be able to break through the wall that so often confronts us. For now we are encouraged by the slow progress Eva is making. And so our journey continues...

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