Ryan is a 22 year old male, approximately 150 lbs and currently taking slightly over 500 mg of B5 each day (as part of a B5-specific supplement, a B50 Complex and a multivitamin). He no longer has spells or bouts of extreme fatigue and is in general good health.

Ryan’s Journey with TDD
Ryan, is a loveable, funny 22-year-old young man who has TANGO2 Deficiency Disorder (TDD).  It was more than 20 years ago when we first noticed that a Flintstones multivitamin helped alleviate some of the spell-like symptoms Ryan was suffering from. It was this observation and those from other parents that helped drive the Natural History Study of TANGO2 and the discovery that B vitamins are extremely beneficial to our kids.

Current Focus and Collaborative Efforts
Throughout our TANGO2 journey, we have discovered that new information often brings new questions. The most pressing question that many families are now asking is “How much of the B vitamins should I give my child?” This question is now a priority for the research team at Baylor College of Medicine leading the TDD Natural History Study (NHS). In the near future, this research team will contact NHS participants to ask specific questions about B vitamin dosages and their effects on your children or young adults.

Research Insights and Key Findings
While these doctors gather evidence-based data to determine dosage recommendations, it is up to families to collaborate and use the available information to develop the best possible recommendations. Below are a few of the facts we know from research (you can use this link to see the full list of research on TANGO2 Deficiency Disorder)  followed by what our family has chosen to do for dosage of B vitamins for Ryan. And, because of the support from our donors and fundraisers, we have made tremendous progress in our research efforts and are able to learn what is helping our children and young adults.

• Research is very clear that B5 (Pantothenic Acid) is very important for those who have TDD.
• Multiple animal models and information reported from families in the Natural History study show that B5 specifically helps prevent metabolic crisis and in some can help improve energy and reduce the TDD “spells”.
• B9 has corrected heart arrhythmias in TANGO2 animal models and heart cells.
• It is unknown if there are other B vitamins that serve a critical role in the health of individuals with TDD.
• The current recommendation from the TDD Clinical Advisory Board is for children and young adults to take a multivitamin or B complex that has all 8 B vitamins that are at least the Recommended Daily Allowance (RDA) from the FDA.

Ryan’s Dosage Strategy, Experience and Results
Ryan was taking a B50 complex from 2019 – 2020. However, he still suffered with daily spells, extreme fatigue and poor quality of life. His experience and our families takeaways from existing research on TDD led us to believe that Ryan needs more B5 than the FDA’s recommended daily allowance that is geared towards a healthy person who has functioning TANGO2 genes. Our feeling is that our kids most likely need a lot more than this minimum. We have increased Ryan’s B5 to over 500 mg daily and plan to add even more if he is sick or shows any increase in fatigue or “spells”.  Although this dose of B5 is over 100 times the RDA amount of 5 mg, B5 is water soluble and not known to build up in the body which makes us comfortable in our choice to raise it. Ryan is thriving on a higher dose. He no longer has spells or extreme fatigue. He is an adult over six feet tall and 150 pounds taking 500 mg of B5.

There are reports from families of younger children who saw noticeable improvement in energy when the dosage of B5 was increased from 5mg to 100mg.