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.

You see, the sweet smelling breath is always at it's worst when he is just about to have an 'asthma attack'. He was dxd as having asthma at only 7mo, as he had had 3 very severe ones that he almost died because of already by that age. He was the youngest patient in our PCT area ever to have been dxd with chronic asthma. I'm now wondering if his 'asthma' is something else, as I've never been fully convinced that it's asthma, as he gets too...phlemy(sp?). And I was shown to do cupping on him for when his asthma is really bad to get all the gunk out. But I have asthma, and am never 'gunky' with it IYSWIM. He is admitted to hospital regularly (3-4 times minimum a year, even at 6yo) with this.

Loudlass usually your body will burn sugars in prefernce to other substance - your brain needs sugar for example.

If for some reason it can't - eg someone is on a very low carb diet then it burns fats. The pear drop smell comes from a by product of this procesd called ketones.

The first thing I guess is that the doctor should check whether there are ketones being produced. Then tale it from there. There are lots of differet reasons why ketones may be produced but I guess the first step is to check fir them.

Don't they check for ketones using a urine test? (vague memories from having hyperemesis gravidarium). I shall book an appt. for him asap now.

PipinJo, as far as I can tell the GAPS diet is a leter variation of the SCD diet, so it is based on it, but differs from the original SCD diet in that it makes use of supplements.
www.breakingtheviciouscycle.info/elaine/dr_natasha_campbell_mcbride_and_scd.htm
gapsguide.com/2008/12/05/differences-between-scd-gaps/
www.gaps.me/
gapsdiet.com/Home_Page.html
the doctor who runs the GAPS diet is originally from Russia and is now based in Cambridge, England.
I don't think the SCD diet advocates the use of probiotics. The SCD is more of a natural diet

*later

PipinJo, I'm no expert but I don't touch soya, I have heard it is dangerous. It is often promoted but if you look up the negatives you'll see that it mimics oestrogen, which can lead to cancers
www.guardian.co.uk/lifeandstyle/2004/nov/07/foodanddrink.features7

I tend to prefer natural diets and food over supplements, because I am not sure I believe that supplements can be properly digested, there are so many different factors in real foods that aid with digestion and real foods provide a natural balance to help the digestion.

I always try to watch out for anything that is too much of a business where they are in it to make a profit, which is another reason that I like natural things which anyone can do and where they are not making a profit off of me.

In the SCD you don't need to use the goat's milk etc. you can do it without the casein to start with. The SCD says that after a while the gut will be healed at which point casein can then be used. Yogurt is a very healthy food but again it is not necesssary. I would buy the SCD diet book, it explaons the science, but I don't think it gives detailed diet help unfortunately. I think there are US mailing lists for the diet.

I don't know, but I think it could very well help your son, particularly as your son is still young and if his gut heals and his immune system becomes stronger, his brain can form new pathways at such a young age.

Not sure about the water, but I do know that Americans are very big advocates of water filters. Tap water is no good due to all the chemicals in it, I use mineral water. I've thought about filters but have never spent enough time looking into it.

buy the GAPS book as well, it will probably be a similar diet to SCD

I hope and pray that it will work for your son

I shall try the pee sticks myself then. Cheers.

PipinJo,
you have probably found this already, but there is a UK support group for SCD
www.scduk.co.uk/scd.htm
also I think I am wrong about SCD not allowing probiotics, it seems that certain ones are allowed, but SCD is quite strict as to which ones. But that is not an area that I really understand anything about.

PipinJo, final point, I promise
SCD is the 2nd most populat diet for autism after GFCF
www.goarticles.com/cgi-bin/showa.cgi?C=1436909
but, since GAPS, is heavily based upon SCD, I think that choosing GAPS would also be a very good diet to use

PJ, you can make chicken soup into any veg soup, really easy (I make it twice a week), I think it should be a good start for your ds. I try to keep close to GAPS diet, although don't make yoghourt and don't bake. I end up shopping mainly in fresh food parts of supermarkets.
PJ, it might be that your ds can't detox metals if he has no aminoacids, the theory behind soup is that it contains aminoacids from meat in liguid so very absorbable.

Saintly, pear-drop smell, I think u could try liver/pancreas enzymes test; afaik it's the liver/pancreas enzymes that digest carbs (also saliva), so if those are low, u can't digest carbs and would be burning fats.

Where do I ask for the autism A panel in UK? Is it only via DAN? Can this be done on NHS (or elements of it)?

sorry, I think I mixed up Saintly & Loudlass

PipinJo, to help with creating new pathways in the brain, it might be worth trying music. Classical music helps with all of its harmonies.
www.educationoasis.com/resources/Articles/building_babys_brain.htm

Most young kids don't have the patience to play a musical instrument, but it might be worth trying out a cheap keyboard for him, he might emjoy the sounds he makes
www.argos.co.uk/static/Product/partNumber/5400564/Trail/searchtext%3EKEYBOARD.htm#tabrev

I think any new experience will create new pathways, some dyspraxia advice also talks about trying to use the weaker side more, hands, feet etc; agree with music, apparently Mozart is particularly good.

nightcat, agree with you
"some dyspraxia advice also talks about trying to use the weaker side more, hands, feet"
I think that is very true as it strengthens the pathways dealing with the weaker side. I think probably learning to write with both hands must also help. Maria Sharapova started out left-handed, but taught herself to play right-handed from the age of ten. I am sure that has benefitted her by creating pathways on both sides of the brain.

GAPS diet basics (we do a fair bit of it but not everything) - for PJ

GAPS

Thanks for that PJ, I will look into those tests; funny enough the electronic test (SCIO) picked up active MMR (I know some people say they are not very reliable, but the test also picked up valid issues that I knew about, so in our case it was spot-on);
Saw your other thread on touch etc, I am reading a book Smart Moves and it makes a lot of sense, I am going to increase touch (my ds also reacts - negatively - to touch!). The author says to concentrate on arms, legs and face, any touch is better than none, so I am just going to experiment. Also, she says physical activity is v important for brain development.