Justin & Eric’s Story
After battling years of strep throat infections with escalating psychiatric symptoms like OCD and tic disorder, Eric, Justin’s dad, first learned of PANDAS, a relatively new pediatric disorder. Together, they sought medical assistance and went through a lengthy and expensive process of defining what worked. Eric wants to share his family’s journey as there was so little available when he started this process.
Justin’s treatment plan was refined through a collaborative effort between our family and Dr. Rob, a Wellness Specialist and Chiropractor. Working the treatment plan consistently, every day, has made hugely impactful changes in suppressing the tics and other compulsive symptoms. We are so thankful for Dr. Rob’s guidance and encourage anyone dealing with PANDAS to reach out to him – his website is here.
Positivity & Perseverance
Justin started experiencing minor PANDAS symptoms around age 5 or 6 like twitches and a rash around his face which eventually became disruptive to his life.
Like most concerned parents, John went through a lengthy series of doctor visits which started with their Pediatric Primary Care Physician. The discovery of the Pandas Disease opened the door to learning a lot about a relatively newly founded disease – going back only about 10 to 15 years.
John walked Justin through a process that seemed to be constantly changing until they finally found some solutions and routines that are working!
Daily Routines & Rules
Our daily routine includes:
Certain supplements, diets, exercise, militant-like routines, staying positive, and family collaborative efforts were all taken into consideration. We worked hard to create an environment where we constantly adjusted in a positive way to overcome any hurdles we faced.
Through continuous small efforts, we went from difficult and scattered to militant-like routines that made a huge difference! Positive reinforcements in the form of attaboy charts, and yes, even bribes to keep the momentum up. We included family, school, and friends in with our efforts and goals to continue the extended efforts of routine and positivity as we adjusted to the daily hurdles.
This is not a magic bullet with quick results. We worked the plan for about 90 days with little results in the beginning, but we persisted and the changes started to show. A year and a half later we are in a good and rather effective routine. So, don’t get discouraged!
Again, we are so thankful for Dr. Rob’s help and recommend him to anyone searching for help with PANDAS. His website is here.
We worked the plan for about 90 days with little results in the beginning, but we plowed through and then the changes started to show.
1.5 years later, we are in a good and rather effective routine. So, don’t get discouraged!
Note that Dr Rob stakes no claim to any curing of Pandas.
Fun activities & exercises that helped
Everything we do is to help reduce inflammation and detox. We’ve made the process more enjoyable finding activities that are more fun for Justin! Staying active really helped but there was also calming acitivites as well.
- Foot bath soak for detoxifying that was done while playing on his iPad
- Salt pool activities at home
- Dry sauna at home for about 10-15 minutes
- Swimming & walking
General Avoid List
Some observations we made:
- Avoid certain imitation sugars found in many foods and even in medications like Claritin-like products and toothpaste, to name just a couple. CHECK LABELS! We only use cornstarch- based pills.
AVOID FOOD LIST – SPECIFICS
Reduce inflammation and detox is our goal so we made a general avoid list to help with that:
- No Dairy
- Avoid fake sugars that can even be found in gum, foods, medicines, and toothpastes like Aspartame, Sucralose, and Sugar Alcohols
- No caffeine
- No gluten
- No bread or yeast at all
- No peanuts
Supplements & Diet Plan
We have found that most prescriptions have fake sugars and ingredients that can cause symptoms. We have switched to supplements primarily and rarely take any over-the-counter or prescriptions unless it’s completely unavoidable.
- Magnesium liquid
- Probiotics & Restore Gut Health
- Oxicell SE
- Para Solve
- Vitamin D & Vitamin A drops
For a complete look at a supplement list, we consulted with Dr Rob, a Wellness Specialists who helped give us insight to what has helped for supplements and diet.
Main Food Rules
There’s no food that’s particularly good for PANDAS. The main point is nothing in excess.
For example, Jack had problems with coconut briefly when he consumed coconut based products multiple times per week. It’s fine now because he eats coconut in smaller quantities.
Diet Goals: Consume inflammation-reducing foods, consistently do what works, and have a list of foods to avoid.
Eats lots of fruits and primarily eat paleo style diets – lots of nuts but no peanuts.
A food allergy test helped us understand what gluten and sugars to avoid.
Bison is a better option than beef. Don’t overuse chicken as a protein source. Clean meat, fruit, and vegetables (organic or local is better).
- There are no “super foods” that are particularly good for PANDAS.
- The main point is nothing in excess. We discovered, for example that Justin had problems with coconut briefly when he consumed coconut based products multiple times per week. It’s fine now because he eats coconut in smaller quantities.
- Diet Goals: Consume inflammation-reducing foods; raw and organic, no preservatives, or processed foods.
- Consistently do what works and have a list of foods to avoid.
- Eats lots of fruits and primarily eat paleo style diets (basically avoid processed foods) – lots of nuts but no peanuts.
Avoid Food List
Reduce inflammtoin and detox is our goal so we made a general avoid list to help with that:
- Avoid fake sugars that can even be found in gum, foods, medicines, and toothepastes like Aspartame, Sucralose, and Sugar Alchols
- No caffeine
- No gluten
- No bread or yeast at all
- No peanuts
“Routine has been the key. We found what worked and we stick to it every day. We are a team and we’ll get through anything together.”
– John, Justin’s dad
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