Hey can you please send me the original research that showed the evidence that having b vitamins in iv’s is important. Am going to see if i can get this added to Tabby care plan. Bonus if you can send me the dosage added as well.
Thanks
Hannah
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To my knowledge at this time there is no single, well-established, original research study that specifically focuses on the importance of B vitamins in intravenous (IV) treatments for TANGO2 patients, as research on TANGO2 deficiency disorder (TDD) is still emerging. However, there is growing clinical evidence and recommendations based on case studies and biochemical insights into mitochondrial and metabolic diseases, which help inform treatments for TANGO2 patients, including B vitamin supplementation. Clinicians/Researchers/Others please weigh in.
@Cmiyake @Farah.Ladha @HdeCalbiac @cosmo @samuel_mackenzie @jmeisner @seemal @nicolasabreumd @Majoarredondo @linaghaloul
Check out a TANGO2 publication from the Mackenzie lab on b-vitamins here
Check out other TANGO2 publications on b-vitamins on the T2RF website here
The above link on B vitamins from the TANGO2 clinical advisory committee has the following language: “For all patients with TDD in metabolic crisis, nutritional support with multivitamin or B-complex supplementation, inclusive of vitamins B5 and B9 (at least RDA dose), should be started as soon as possible after the onset of metabolic crisis. Early initiation of parenteral nutrition with vitamins (preferred) or intravenous fluids with vitamins should be started if enteral nutrition is not tolerated (level of evidence 3b).” As a clinician, I interpret this as B vitamin supplementation is important to start through whatever means necessary. However, only when individuals cannot receive medications by mouth or a tube through the nose or stomach should intravenous supplementation be considered. This does not suggest that intravenous B vitamins are superior to oral B vitamins. Intravenous administration is not feasible or appropriate in the majority of people with TDD.
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Thank you thats really helpful.
We are in the process of updating T care plan.
We often end up in hospital with vomiting episodes when she is not tolarating her sos20 through her PEG and are put on a drip with added sugar.
She is not in crisis at the time but we are preventing crisis.
Should at this point b vitamins be added into the drip. She is not having anything else orally or through PEG? Is there ANY reson why it would be a bad idea to add B vitamins
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Hannah -
When Ryan had Lyme Disease two years ago and was unable to eat, the doctors did introduce the B vitamins into the IV - with the key here being he was not able take them orally and we all agreed given the stress his body was under, he needed them . I know @Cmiyake and others are working on disseminating more specifics around TDD and hospitalizations.
In Ryan’s case, with the severity of the illness and immediate vomiting of any food or liquid, he essentially went about 48 hours without food of any kind. Kasha and I both believe it was the B vitamin supplements in the IV that prevented him from tipping into crisis. He was VERY VERY sick, but his body was able to fight the virus with the help of antibiotics.
In short, I think the important point from my parent perspective is that we know B vitamins play an important role in keeping our children healthy and out of crisis. If they’re hospitalized or otherwise can’t take them orally, it’s even more critical that they be administered somehow.
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