mitochondrial disorders & autism- are there enough of us for a thread

[saintlydamemrsturnip]

I've just read this month's autism file and the box about mitochondrial cytopathies stood out- my son has many of the symptoms. If there's enough of us I'll give the box and his score.

We are under a neurologist who agrees that it is a possibility and has suggested some simple tests and potential supplements that might help. As there's no agreed clinical treatment plan yet we have all agreed we don't want to go for a muscle biopsy at the moment but that it might need to be considered in the future.

However, reading the suggested treatment it struck me that it's all (AFAIK) fairly safe stuff, so I was going to try and find out more about the treatments and write to the neurologist asking about the 'giving it a go' without doing the invasive tests first approach (my impression is that if there is limited risk of side effects he might be open to the idea).

Just wondering where everyone else has got to and whether you are doing anything and if so what.

PipinJo, great to hear that he enjoys his keyboard. I am sure that soon you will be the best SCD or GAPS cook in the country
You're right it is like cooking as they used to do it. A lot of the things they say are good for us nowadays, aren't really.

Thanks Pipin....

PJ, yes, I give my ds occasional B complex (apparently they are better absorbed when all Bs are present). But did you know, Bs are made in the gut by the bacteria that help to digest meat, I am so glad I managed to get ds to start eating meat. There are so many things you can be deficient in when low in protein.

nightcat,
Have you seen this interesting article on the SCD diet.
www.pecanbread.com/gottschall_veritas.pdf
At the bottom it includes a list of foods that are beneficial and not beneficial. The GAPS diet is based on SCD.
The original SCD book contains the science that it is based on
www.amazon.co.uk/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=sr_1_1?ie=UTF8&s=books& qid=1265369872&sr=8-1

I've looked at it in a bit more detail, and now think that maybe the GAPS diet is easier to implement and use, since it is more flexible, and possibly easier to prepare. Also I don't agree with some aspects of SCD for example where they allow one aspartame fizzy drink per week once healed. I prefer the GAPS where they disallow all aspartame, also the GAPS has a good emphasis on foods such as sauerkraut, and am not sure that SCD does the same. But I think the underlying science in the SCD might be of interest to you.

Also have you seen the 6 video interviews with GAPS founder, Dr. Natasha Campbell-McBride on youtube. Part 1 of 6 is at the following link
www.youtube.com/watch?v=nLP0Ijo2CK4

claig, I am familiar with SCD, read the website but not the book. I personally think that GAPS picks up where SCD (original) left off and I am so glad that Natasha CMcB has updated it in a way.
Will watch the links you sen later!
For me GAPS book was a revelation, coz she explains why.. love it. We are not 100% GAPS (don't bake and don't make own yoghourt/mayo), but the way I look at it is do what you can, b/c even small steps help. She also explains why gf/cf is not enough - now that was a revelation too. Wouldn't knowingly go near artificial sweeteners and generally make most effort in the kitchen - it has paid off so far.
Also, with GAPS there are shortcuts, you can get sauerkraut and brine preserves in most continental delicatessen (my mum used to make own, maybe I might try one day). And many of them don't contain preservatives, just salt. I try to avoid vinegar. Just bought kefir to try out. You know, I think it's the processing that's a problem, b/c most of traditionally made produce (eg kefir, yoghourt) would be using natural enzymes and time, it's all been so speeded up now, with no regards to natural processing and alsthough basic ingredients appear the same, the breaking down of molecules hasn't taken place, some of them may have been taken out/removed.
A funny mopment, I make soups quite often, our extract is adjacent to next door path, my neighbour often says, oh I so like when you cook your soup, it reminds me of my mum's cooking..
And now I have been reading about Brain Gym exercises and am taking it next step (physical, not puzzles), that includes me.

exactly right, small steps are better than none, and flexibility is important otherwise the diet becomes impractical. As you say, being able to buy the sauerkraut is a great time-saver. Agree with you about avoiding vinegar, the SCD seems to allow it, am not keen on that. Mum's cooking is always the best and the healthiest. For years we have been told that eggs, animal fats, salt, butter etc. are not good for us, when the truth is the opposite.

claig, I so much enjoyed the youtube link!!
U know, I got appendicitis when we were switched from u/ground water to chlorinated, just as they said!
ALso, my ds was badly deficient in arachidonic acid, but noone until now explained the significance!!
Some comments on epilepsy in part 5 of 6 too, very interesting.
Lastly, I didn't know until now that Natasha is of Russian origin, that explains a lot in her approach.
Even tho I read the book, I still learnt some interesting stuff, recommend the youtube and the book (which has more practical info on foods etc).
thanx claig!

nightcat, glad it was of use. I also tried typing in "specific carbohydrate diet" in youtube. Tons of stuff comes up, including some scientific lectures. If you get the time to follow it up, you may be interested in that as well.

You might find that if you're trying to follow a GF diet that vinegar will cause a problem as it has gluten from barley in it. Same for tomato ketchup & baked beans unless you use Heinz which is made with spirit vinegar which is GF.

Did the comments about epilepsy say anything about the fact that eliminating artificial sweeteners can help to lessen the severity of each seizure and lower the actual ^amount of seizures by any chance?? Aspartame and saccharine are neurotoxins, and build up in the body...

Loudlass, agree with you about aspartame and saccharin. She doesn't specifically mention them but your point about them being neurotoxins fits what she is saying. She says that most epilepsy is caused by a build up of toxins in the brain, and when the level of toxins is too high, the brain sends one electrical discharge to destroy the toxins. She says that the epileptic fit is a cleansing process for the brain. She says this in the first 1 minute 40 seconds of the following video
www.youtube.com/watch?v=naFmpsSXbnE&feature=related

LL, agree on aspartame et al, you are not alone! yes, white or apple vinegar in theory should be gf, but I honestly think that commercial vingear belongs in detergents section (window cleaner?), although I have to say I find it hard to avoid.
Have you considered probiotics? Only after reading the book I understood what that was all about. It could be that the toxins from bad gut bacteria are still causing toxin buildup for your dc? We have been using probiotics ever since.
The lecture also says that eventually (after approx 2 years or so), the body should be able to handle some occasional contamination as the gut would have recovered. I know my ds can now have dairy, but I don't overload him - and would never knowingly give him gluten, it's noticeable when he gets contaminated.
I think aiming for 100% GAPS is ideal, however I also thing that 80/20 rule applies, once you hunt down the most offending items in turn, you are close enough to ideal.

Claig, are you SCD or GAPS or somewhere in-between?

nightcat, I came across the diets because I was looking to help a relative who has irritable bowel problems. I am starting to eat more of the foods that they consider to be beneficial and am cutting down on the ones that they recommend avoiding. But I don't apply it 100%, I still eat pasta and chips, but in smaller quantities than before. I think they are both great and very similar and as you say because of the 80/20 rule, either of them look very beneficial. It seems to me that Dr. Haas, the original founder of the SCD, and Elaine Gottschall did all the ground-breaking scientific work in explaining how and why this diet works. The GAPS diet has made use of all that knowledge, added a few things and applied it specifically to autism.
So I agree with you that it looks like the GAPS is probably a better choice, but they both seem like very good diets.

I found that my irritable bowel condition cleared up entirely after treating myself about 6 months for Pyroluria. Here is a copy of a previous post to someone who was not sure Pyroluria is real, hope you find it helpful.
Hope your child improves.

Pyroluria is a "medically unrecognized" but very real disorder & easily provable as real. In my opinion, & there is good evidence, it has been ignored, dismissed, & suppressed since it's discovery in the early 1960's because it explains & leads to inexpensive natural treatment for a large number of highly profitable disorders from ADHD, Panic, Phobia, to Alcoholism, eating disorders, & Osteoporosis.

One must remember that the huge Medical/Pharmaceutical industry is a business whose first priority is making money, second is controlling health information & regulation, & third is helping sick & injured people.
While individual health practitioners can be warm & noble minded individuals, in all organizations, the higher up you go in the pyramid of authority, the more decisions are based on Corporate & Industry profits & less on what is best for the peasants below.
The never ending scandals in politics, big business (Banks), & most recently with Mr Murdoch illustrate this well.

The good news is that Pyroluria is definitely Not genetic, but a (poor) diet/weakened & immune system- initiated, multi-resistant Infection which is easily treated & slowly reversed with vitamins & inexpensive natural foods. One can feel, or even more easily observe in another, a calming of anxious feelings & behaviors such as ADHD, obsessiveness, Phobia, & even the strong urge to self medicate uncomfortable feelings with food, sex, alcohol, or shopping, in less than One Hour.

Research well Pyroluria symptoms & Pyroluria Infection on your own for the health of your family, because Drs are not taught inexpensive natural remedies that interfere with the Almighty Revenue Stream.

All very interesting. Have got gaps book and it did make sense. Ds with delays and asd does have odd bloods and is currently under a metabolic paed but no dx let alone treatment. We do none of the diet_even went to mcdonalds today but ds does have a pretty healthy diet of meat veg fruit and homemade bread most of the time.

Are you doing gaps and supplements pipinjo? Any impact?

Thanks pipinjo. so overwelming. have decided to try to at least get omega into him. He will eat mackerel once a week so would probably only have to do a small amount of supplementing to have an impact. He hates the fruit flavoured oil supplements - can you buy just ordinary cod liver oil to diguise say in a meat gravy?