What types of seizures does your child or young adult living with TDD have?
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Hanna had her first tonic clonic seizure at age 16 (she is now 29 years old); she began using lamictal and later keppra to prevent the seizures however she continued to have one or two tonic clonic seizures a year. They were brief seizures lasting less than a minute. In her early twenties she began having myoclonic seizures, which looked like “arm jerks” usually in the morning. She continued to have the arm jerk/myoclonic seizures despite the keppra for several years. She has been on a mito-cocktail with B9 and B5 vitamins for 2.5 years and has not had either type of seizures since.
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Yuito has developed tonic-clonic seizures. He hadn’t had a seizure for a while, but he has had six in the last month, so we need to be careful. The seizures last about two minutes and Yuito falls asleep.He has been taking Rivotril.
@saori1989JAPAN is Yuito on B-vitamins? If so, which ones and what is the dosage? I know you had mentioned B-5 but what about the other B vitamins?
Yuito has been taking vitamins prescribed by him doctor. Specifically, he takes 0.3g of Panvitan powder and 0.05g of Biotin powder every day.
I calculated the intake amount.
Vitamin A 833.3IU, Vitamin D 66.7IU, Vitamin E 0.4mg, B1 0.3mg, B2 0.5mg, B3 3.3mg, B6 0.3mg, B12 0.3µg, Vitamin C 12.5mg, Folic acid 0.2mg, B5 1.7mg Biotin 0.1mg
In addition to this, he is taking 250mg of B5, which I mentioned the other day.
panvitan powder: KEGG DRUG: Retinol palmitate, thiamine nitrate, riboflavin, pyridoxine hydrochloride, cyanocobalamin, ascorbic acid, ergocalciferol, tocopherol acetate, calcium pantothenate, nicotinamide and folic acid
biotin powder: KEGG DRUG: Biotin
Please let me know if there are any vitamins I should increase the amount or add.
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Thank you for sharing! This is helpful. @KMorris24 your thoughts on this and whether she should add B9? I know we don’t have specific guidelines yet but was wondering what you have seen what you and other parents do.
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@anngeff @saori1989JAPAN Folic acid is another name for b9 so your child is getting .2mg of that. That’s not very much. I would talk with your doctor about increasing that one. Ryan takes 50mg of b9 (folic acid, folate) each day. Some research has shown that b9 can correct heart arrhythmias associated with TANGO2. Folate as a potential treatment for lethal ventricular arrhythmias in TANGO2-deficiency disorder
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@KMorris24 @anngeff
Thank you for your reply and sharing the information. I will ask our doctor about this at our next appointment. I will also look for over-the-counter B9 supplements. Yuito is 3 years old and cannot take pills, so I need to look for powder or liquid B9. For reference, could you tell me what brand of B9 Ryan has been taking?
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