1 year later…

It’s hard to believe that it has been one year since we posted Sara’s Recovery Video.  I am even more amazed that it has been viewed over 20,000 times since it was posted!  The response to the video has been incredible, and we have received emails and messages from people around the world thanking us for sharing our story.  Specifically thanking Sara for being so willing to share such a personal journey with the world.

We get a lot of questions and the most common one is “How is she doing now?” So we created an update video to recap the incredible recovery that has occurred since our last update:

There are a few other frequently asked questions, and I will try to address some of those also.  One thing people often ask is whether or not Sara is still on a GF/DF diet and the answer is no!  We gave back dairy right away.  It was never really an issue, and I was mistaken when I thought that the small bits of dairy she was having made her so sick again. In fact, it was the introduction of the probiotics, but I was unaware of that at the time and assumed it was the dairy.  It took us a full three months before Sara could consume Gluten again, but she now eats both regularly and has no food intolerances.  So many kids just like her are having the same success!

In the video, we mention that she was on inulin, fish oil and olive oil but we did eventually switch her to Rifaximin due to her age and our ability to access it.  But the recovery that was captured in the video was all obtained by inulin, and while I was a big fan of sticking with inulin for its ease of use, I wanted to ensure that we gave Sara the best shot at recovery and we switched to Rifaximin some time ago.  We have no way of knowing if she needed to switch, or if she could have gotten full recovery from inulin alone, but rest assured she got amazing results from inulin!

Additionally, people want to know if we were patients of Dr. Nemechek and if they need to book an appointment with him.  The answer is no, we have not met him in person, and we started Sara on the protocol when there was just a blog post!  Soon after, he released his book The Nemechek Protocol for Autism and Developmental Disorders and the book is so comprehensive that MOST people can get all the information they need to get recovery from the book alone!  If you have a medically complex case, you might want to consider a Skype session, but most people will be able to get recovery simply by following the book.

Lastly, people want to know if I consider her 100% recovered.  Though Sara would no longer meet the criteria for her long list of diagnosis, she still has some minor issues.  Relapses still happen, which means we still occasionally see the minor flare-up of the symptoms that indicate relapse for her, and though her brain came “back on” and she no longer has cognitive issues, brain fog, ADHD etc, she missed a LOT of school, and valuable learning skills and education.  During the 2-3 years that Sara was at her worst, she missed out on crucial learning strategies like time management, good study habits, how to prioritize tasks and a lot of curriculum.  For that reason, she still has an IEP in place while she catches up and she is still identified as a child with needs in classroom settings.

Seeing Sara so sick, for so long, it is sometimes hard to turn off that worry in your head. There are times when Sara has a headache, or is tired or she does poorly on an assignment, that I panic and worry that it means she is not recovered.  I over-analyze and fret and worry she is sliding into relapse, and then I take a breath and realize that my son also has days were he has a headache, or is tired or sucks on a test!   So yes, we consider Sara to be recovered but in a transition phase as she catches up on missed time, education, and life skills.

I often refer to The Nemechek Protocol as the most complicated, simplest thing EVER, and having a support system in place while you get recovery is really important.  This is long-term recovery and progress can be slow and sometimes difficult to navigate.  For that reason, I always encourage people to join The Nemechek Protocol Autism and Developmental Disorders Support Group on Facebook! It is an international group with 30,000 members from around the world all in various stages of recovery.  It is a great resource for people who want to connect with others also on this journey!

For those not on the Facebook platform, or for those who don’t want to get lost in the sea of 30,000 members there is also The Nemechek Protocol VIP Support Group.  Members of the VIP Support Group have access to 4 Support Coaches (myself included), who will take the time to work with you one on one, and help you make sense of what you are seeing. The Support Coaches have extensive knowledge of this protocol, have achieved recovery themselves, and are dedicated to helping you get the same results.

We also want to say a quick thank you to everyone who took the time to send us a message and share how the video has impacted your lives.  We are truly amazed by how many people have been impacted by our story, and we hope that each and every one of you achieves the same recovery that we did!   Keep spreading the word! 🙂

 

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