Taylor is officially 12 now and so much has happened in our lives lately but I really thought it was important to share this info with you guys because it could be really helpful to someone! When Taylor was really young we started to notice differences in her behavior and their relation to her bowel movements. She had a lot of trouble with constipation and this always correlated with crazy behavior. It seemed like for every good day we would have two bad days. There was definitely a brain-gut connection that couldn't be denied! We saw a few GI specialists and they couldn't find anything wrong. They kept telling us it was a bowel motility problem and miralax would fix the problem. Spoiler alert: miralax did not fix the problem! 😆 I honestly don't believe it was a problem miralax could fix. Taylor is now 12 and I have been searching for answers since she was 3. A little over a year ago a friend of mine mentioned this thing she had stumbled upon that had really helped her daughter with Tourette's. She invited me to a facebook support group about it and I covertly watched the posts from other moms and dads about their experiences. I am a super skeptical person when it comes to autism and any advances. I think it's because I can't stand to get excited about something that could help and then be disappointed. That thing she mentioned to me was the Nemechek Protocol. After hanging around the facebook page for a few months I decided to buy Dr Nemechek's book and make a decision for myself about his hypothesis regarding the brain-gut connection. It costs around $20 which is more than I usually spend on a book because I rarely buy books brand new but I had done enough research that I wanted to give this book a go. Dr Nemechek's book I dove in the day I got the book and let me tell you, this book made soooooo much sense! The information presented in the book is laid out in a very easy to follow format, while also giving you all the facts and science that you may not be familiar with if it's been a while since you took biology. Basically, Dr Nemechek believes there is a bad bacteria living in the guts of people with many disorders and because of this it affects their autonomic nervous system and causes metabolic inflammation but he believes this damage is reversible. During his research he actually found the key to many of the common diseases people are affected with today are actually caused by dysfunction in the autonomic nervous system. These diseases range from diabetes to heart disease but I can't speak specifically about those because this book and Dr Nemechek's practice is geared toward neurological disorders. The book lays out a variety of options for treatment. The options are basically trial and error with the inulin, olive oil, and fish oil or going to California to meet with him personally for a tailored regimen. We obviously decided to go with option number 1. Meeting with Dr Nemechek in person is pricey and he is booked way out. Fortunately, the book lays out the specifics of what dose to start with each item and he gives recommendations on the brands he prefers. These are the 3 products we are currently using. Taylor gets 2 gummies and 1 spoonful of each liquid. Pills are also available for the omega-3 but Taylor doesn't swallow pills so we prefer the liquid. When we started Taylor was about to turn 11 and Dr Nemechek states that children older than 10 typically do not respond as well to the treatment as younger children do. In this case, he recommends rifaximin instead of inulin. He really had me until this very moment and then all of the sudden I wasn't sure I was sold. We were fine when it was just a few supplements and a change in olive oil but a medication is completely different. Inulin is just a prebiotic, no harm in a daily prebiotic but rifaximin is a prescription medication. Rifaximin is an antiobiotic that fights bacterial infections in the gut and your dr will need to prescribe it to you. Unfortunately, Rifaximin has some pretty serious side effects and Taylor is non-verbal, she can't tell me what is happening in her body so it is difficult for us to give her something that may make her very sick. In addition, we try to avoid antibiotics unless they are absolutely necessary. The book also talks about vagal nerve stimulation as a proposed treatment but gives very specific warnings because this treatment can be dangerous. Vagal nerve stimulation must be prescribed and managed by a doctor. Dr Nemechek only advises this treatment if there has been little to no improvement but states most of his patients do not need this treatment. We decided to just get the inulin, fish oil, and olive oil and see what happened. What could be the harm, right? Let's talk a little about Taylor's improvements in the past year. We started the protocol in March and within a week Taylor was noticing more things. It was like all of the sudden her eyes were open and she was able to push all the other little annoyances in the world out and focus on little things but at the same time she was stimming and flapping her hands a ton more! It was like a win and a loss but I felt like we had come out ahead. A few days later, we were noticing less constipation and softer stools. This was huge for us, she has had so much trouble with constipation! In July we attended a day camp and after using the bathroom she walked right up to the sink, got soap in her hands, and washed her hands completely independently. I was so shocked I nearly cried! Also around this same time she said "purple ball" and pulled up the front and back of her pants after using the bathroom. Previously she had only ever pulled up the front and refused to acknowledge her backside hanging out. By this time, the stimming and flapping had stopped completely. I'm actually just noticing as I'm typing this that she used to do this thing with her forefinger and her thumb where she tapped them together constantly and I can't remember the last time she did that, it's been at least two or three months. It's funny the tiny little changes we have seen that were so small we don't notice until we really think about it. In August, we went to the park and Taylor took off running toward the swings. I'm used to this, she always tries to leave me places. As soon as she sees something she wants, she takes off and this is why I can't wear sandals to the park! This time she ran about 8 steps and then stopped dead in her tracks, ran back to me, grabbed my hand, and pulled me to the swingset with her. She has never really cared about others having a good time but this time it seemed she wanted me to join in the fun with her. In October, we had another exciting turn of events! She high-fived me with BOTH hands! She would only ever use her right hand for things and pretended her left hand didn't exist. After this we started noticing she was able to use the whole left side of her body more purposely, like all of the sudden her brain had connected to realize this side existed and could be helpful too. She uses her left hand to hold her plate or bowl when she eats out of it so it doesn't slip away. This has really helped at dinner time because before she would nearly push the bowl off the table and we constantly had to reposition it for her. We have continued seeing tiny improvements in Taylor since then. Taylor is now able to walk places independently without holding someone's hand all the time. She is able to sit on the couch for more than a few seconds without getting up to run all over the house. She is just a more calm person overall. She can follow two-step directions and seems to make connections to things. For instance, if she wants to go outside she will get her shoes. She also has a communication device that she uses and her ability to communicate with us seems greatly improved on it. I feel like I have rambled on and on about this and probably none of it makes any sense. It's such a huge topic and I want you to have all the information. I tried to condense a 170 page book and my personal experiences into a blogpost and I may not have done that justice but I am happy to answer any questions you have. I can honestly tell you I do not agree with everything Dr Nemechek believes but I do truly believe there is a gut-brain connection with autism and this particular protocol is worth a try. xoxo, Christy