Consider This Before Making Changes to Your Child’s Recovery Interventions

April 28, 2016

Have you ever come across an interesting article talking about a new angle on an underlying cause of your child’s disorder? Or have you read a killer blog post that took you down a rabbit hole of research about the next great nutrient, diet, therapy, gadget, (fill in the blank here)? I have, and more times than I’d like to admit. Before you go all Alice-in-Wonderland and change things up with your child’s routine, let’s take a step back and consider this before making changes to your child’s recovery interventions. Let's talk about how to figure out the best ways to determine when is the right time to make a change or implement a new therapy or protocol for your child.

Consider This Before Making Changes to Your Child’s Recovery Interventions

Five Things to Ask Yourself or Your Practitioner Before Making a Change

1. Have you documented your current protocol and tracked the changes in your child? I have to admit, I’m not always great at tracking consistently, but I have always found that I get the best results and make the best decisions when I do. That’s why the first thing I did when I started My Child Will Thrive was to put together a few key tracking tools. When you have an organized and consistent method of tracking your child’s journey, everything becomes easier.
2. What are the objectives and outcomes that you expect from starting this treatment or therapy? Writing out the objectives and potential outcomes of each intervention helps to shape your perspective when starting something new or considering a change. Often, when a new change is suggested by our practitioners, we jump at the opportunity in hopes of further recovery, but we don’t stop to ask what changes we can expect. What are the symptoms that your child is currently having that could be resolved by the current or changed protocol? Knowing first-hand what changes you can expect will help you set a benchmark for progress.
3. How long will it take for the new intervention to evoke a noticeable change in symptoms? Discuss the expected timeline up front with the practitioner who recommended the treatment or therapy. Sometimes therapies can actually make symptoms worse before they get better (an unwanted surprise that might shake your confidence). For example, a Herxheimer reaction, or a “healing reaction,” can occur with many diet, nutrient, and biomedical therapies. This reaction can actually make it look like the protocol is making things worse for your child. If you know upfront that a Herxheimer reaction is possible, and you have a practitioner who you can contact to discuss how the new intervention is impacting your child, you will get a more accurate picture of how to proceed. Refer to your tracking tools and discuss patterns and trends in your child’s symptoms to help determine whether the reaction is part of the healing response or an adverse effect and whether you need to push forward, slow down or stop altogether.
4. How do you measure progress with each treatment or therapy? Measuring progress is probably one of the toughest aspects of the recovery process. Sometimes the gains are obvious (like when the cloud lifts and a nonverbal child becomes verbal) and measurable (like when you perform lab tests and can repeat them to see that a gut infection has been resolved). However, much of the progress our children make is gradual and subtle. The slow and steady gains are to be celebrated equally and, over the marathon of the healing journey, they make a mountain of difference. The hard part is measuring them.
   This is where if we have to get creative. Outlining the objectives and potential outcomes from a particular treatment (see above) is your starting point. Once your outcomes are listed, choose the appropriate indicators, signs or symptoms that you can track. Take copious notes. Capture pictures or videos at regular intervals to help to track the progress. When progress is expected to be more gradual, enlist the help of a friend or relative who only sees your child periodically. I can’t tell you how many times friends or family tell me about changes they notice in my daughter between visits—changes that I haven’t fully grasped because I am with her every day. Gradual changes are essential to success, so finding ways to track, account and celebrate them are essential.
5. How consistent have you been with the current intervention? Be honest with yourself here, but don’t beat yourself up. We all have periods when we aren’t as consistent as we intend. Are the lack of results a reflection of the treatment choice or possibly just that you have been unable to incorporate the plan as it was intended? If there have been obstacles, what were they and how can they be overcome? When making a choice about a new treatment, it’s easy to get so excited about the possible positive outcome that we take on too much. You want to do everything to help your child, but you also need to take an honest look at your constraints to see what you can reasonably accomplish.

Decision-Making Tools

1. Protocol Review Worksheet: First, download our free Protocol & Therapy Review Worksheet to help organize the information you need to make a decision about whether your current protocol is achieving the objectives you set out.

Grab Your Free Protocol & Therapy Review Worksheet Here!

2. Photos and videos: Use your phone to take photos or videos of your child at regular intervals to help document visible signs of their progress.

3. Evernote: Evernote is a free app that you can access on your smartphone or computer that allows you to keep a digital notebook of just about anything and everything you want. It is my favourite tool to help keep all my ideas and records in one place. I will soon be creating a blog post and mini-training on Evernote Hacks for Special Needs Parents, so if you haven’t already, sign up for updates to the blog.

4. Practitioner: Talk to your practitioner once you have documented all information you have. Your practitioner is one of your most essential tools (although they may not like to be referred to as that!).

5. Your gut: I’m a big believer in the gut feelings of parents when balanced by a thorough review of information and a conversation with your trusted practitioner. A well-informed gut feeling will give you all the information you need to make the best decision for your child.

Let me know in the comments below how you make a decision to change your child’s protocol and what trips you up when making this decision.