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High vitamin B1 and B6 and biotin doses, for CP or other conditions?

(14 Posts)
minipie Mon 09-Oct-17 23:28:17

DD is 4 and has mild CP. We recently saw her NHS neuro consultant and he wants her to start taking high levels of vitamin B1, B6 and Biotin (B7), as well as omegas. He says he has been giving these vitamins to patients (I believe mainly abroad) and has had excellent results, including improvements that can be seen on MRI scans (!!)

Has anyone tried high dose B vitamins? Any feedback if so?

Kanga59 Tue 10-Oct-17 22:53:30

My child has a different disease and takes v high doses of a couple of vitamins including riboflavin. There's no peer reviewed good double blind clinical trials in this area so it's a case of suck it and see

minipie Wed 11-Oct-17 15:44:44

Thanks Kanga. Do you think it has helped?

I'm willing to give it a go but worried about possible negative side effects - the consultant said none in his experience but google brings up a few rather nasty possibilities.

minipie Wed 11-Oct-17 15:46:54

Forgot to say - the main thing I'm trying to help DD with is sleep and relaxing generally so may apply to conditions other than CP

Kanga59 Wed 11-Oct-17 17:18:45

He really dislikes the riboflavin taste so I don't give it regularly.

The only thing he takes that I think is having some sort of positive effect is CoQ10 (ubiquinone). Research shows that it helps rid the body of reactive oxygen species. My son is certainly clearer since starting it

Have you considered Hayley's Hope?

Usernamealreadyexists Sun 15-Oct-17 08:42:12

Message withdrawn at poster's request.

minipie Sun 15-Oct-17 21:05:16

Thanks. I hadn't heard of Hayley's hope, I will look it up. Also will look into Co q10 as I have read that is connected to sleep (I think?)

Username the doses are 1000mcg biotin, 100mg B1 and 50mg B6.

He did also mention B12 but didn't think that was so important. DD eats a lot of meat so hopefully should have a fair amount of B12 anyway.

He also said she should take omegas but she already has those.

She also has magnesium (annoyingly I can't get her to accept zinc due to taste) although after further research I'm going to switch to the glycinate form which is meant to help specifically with sleep. I've ordered a magnesium glycinate supplement which also contains fairly high B1 and B6 so let's see how that goes...

Usernamealreadyexists Mon 16-Oct-17 08:14:18

Message withdrawn at poster's request.

minipie Mon 16-Oct-17 10:20:21

Just to clarify I haven't actually started DD on the B vitamins yet - that's what the dr has advised but I'm unsure about it. Haven't found brands yet but I know some forms are much more easily absorbed than others.

Magnesium, she's been taking Natures Plus Animal Parade magnesium for kids, chewable tablets, but that's magnesium citrate which is well absorbed but not specifically connected to sleep. The one I'm going to switch to (if it ever arrives!!) is Swanson timed release magnesium glycinate with B1 and B6. She'll have to swallow these.

Jigsaw brand also does slow release mag glycinate, they do one with added B6 and B12, and one that's just the mag glycinate alone. However those tablets looked huge!

Zinc, again we have the Natures Plus chewable one for kids but she hates it and won't take it!

minipie Tue 17-Oct-17 08:51:59

Humph. The Swanson magnesium has arrived and the tablets are enormous. DD can't swallow them - I would struggle myself. Can't recommend them!

Usernamealreadyexists Tue 17-Oct-17 10:08:54

Message withdrawn at poster's request.

minipie Tue 17-Oct-17 15:31:37

I could but I think the timed release effect only works if they stay in one piece (and I really want that effect as it's early mornings I'm trying to sort)

Usernamealreadyexists Tue 17-Oct-17 17:24:05

Message withdrawn at poster's request.

minipie Tue 17-Oct-17 21:00:17

Thanks! It won't be timed release but worth a look - I will have a google

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