Here are some suggested organisations that offer expert advice on SN.
taurine and epilepsy(11 Posts)
been some evidence to suggest taurine supplements can help
not a scientific article. I'll find those later
Hmmm interesting, wonder what quantity of Taurine?
Wonder if its worth trying some Red bull down the tube? In the privacy of your own home of course, might get some horrified looks out in the street!
dunno. I sprinkly a third of a capsule into dd's food when I remember. Completley unscientific but as a veggie she might be lacking a bit. While her seizures come from her brain injury maybe taurine lack might make them worse?
We're having a go at removing gluten from DS's diet fololwing a post on here - maybe I should add some taurine too! Would be interested in reading more about that Riven. We are still waiting for a third blood test on DS' biotin levels as the last two have been borderline. I will be very if that is a cause of his seizures as it's over a year that they first tested him, then they lost his results and none of the drs seem remotely interested chasing them.
that link had a link to scientific papers on it.
Doctors are rarely interested in any links between diet and seizures/behaviour. Such a shame as the ketogenic diet is being shown to work for ASD as well. And gluten free has also had good results.
I am also watching my ds taurine after reading good things about it. My ds got quite fed up with blood tests, so we try to do non-invasive like urine these days.
In the spring (urine aminoacids) he was found taurine deficient. After reading more about it, we stepped up on meat (he was almost vegeterian) and added B complex (B's are frequently deficient but rarely tested).
6 months on we retested urine and it has now got into "normal" range (only just). I am sure it would be OK to supplement, although I just wanted to see if he was able to make it (it's made with the bile and has some imapct on absorption of fat-soluble vitamins).
My ds urine aminoacids are almost all either deficient or boderline deficient. I am now working on his histidine, which is also extremely interesting subject, becuase it's to do with maintaining healthy myelin, production of histamine and neurotransmitters.
Also found out that Zn is extremely important for all sorts of enzymes in the body. I had my ds hair tested and he was borderline low in Zn. From my reads it looks that you can't cure Zn deficiency, you just have to supplement to maintain healthy level (I expect this may have something to do with the gut damage before we went gluten-free). Zn & histidine work together, again, I am only suplementing Zn for now (not histidine) and will retest urine in the next few months to see if there is any improvement in histidine absorption from foods as well as maybe other aminoacids. I also give him occasional enzymes to help with breaking down foods better.
The amazing thing is that once I saw improvement, it's such a boost to continue. In one health lecture I heard a dr saying that all cells need all nutrients, so I am now reluctant to supplement mega-doses of anything and do it slowly and gently.
FZ, let me know how things go for you. I haven't looked into biotin, I will have a look what it's about and I will also check if it ever appeared in our tests in the past.
how did you get this stuff tested? dd recently had a blood test and I sneakily ticked B12 on the way to the clinic so we geta clue.
dd has a multi-vit and mineral supplement because her very abnormal diet (ketogenic) is deficient in all sorts of things.
hi Riven, my ds B12 was OK, that was tested by the same neuro who did the gluten gene test. I looked up biotin AND it is one of the B vits (B7)! B12 is made by gut bacteria, so often probiotics can help.
We do tests with help from our paed, I managed to establish an excellent relationship with him over the years. I had told him in tears on one of the early occasions that I was not willing to give up even if everyone else had and desperately needed his help as maybe there was something we could do. A few years later when I came across gluten research, I started looking into it in depth.
The urine test we have had is called Urine Amino Acid screen. There could well be other useful urine tests too, I am still looking into it. I am also looking into a test for pyroluria, which would pick up issues with B6 & Zn deficiencies/borderline results (pyroluria can be also linked with some types of epilepsy).
Now, as and when I find out about anything relevant and worth checking, I write to our paed and ask for the tests. GPs have changed so much here that I wouldn't have hope or time to explain what and why. We still go to the hosp in London but we also see our paed 6-12 monthly for a catch-up chat. For us he is a lifeline where I know he won't fob me off. My ds had some blood tests in the past too, but I am now happy with a maintenance approach and address issues as and when.
Unfortunately, with most tests, we never get any commentary, more often than not it just says "no significant abnormality", so I am just left researching it line by line myself. Quite often if one or two substances were deficient, the overall result was still called "normal" and only when I worked out significance of them I got going on what could be done - and it wasn't at all "normal".
Like with histidine deficiency, this appears to have some effect on hearing and blow me down, my ds does have a slight high-frequency hearing loss, I am hoping that by fixing Zn he might at least stabilise; Zn acts synergistically with histidine and I think with taurine too, it's all like a big jigsaw puzzle. Also omega 6 are good for improving histidine.
I read some great reports on keto, both diets are not that far apart to be honest (gf less precise), we also try to keep low on carbs and good fats are good for health anyway.
yes, I know that omega 6 in excess increase inflammation etc, but omega3 and omega6 need to be in balance approx 1:4 (omega3mega6). Even though the general opinion is that we have more omega6 than 3 in the diet, my ds was actually deficient in omega6 (blood test) and also in arachidonic acid (for me this is maybe a clue to test him for pyroluria). I think it might be to do with how he processes fats (bile etc) as he was deficient in all fat-soluble vits anyway. Still working on this though.
how that grin got there - I really don't know! I see, it was a colon & o for omega - oops!!
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