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Do you know anything about Mitochondrial Disease?

(8 Posts)
mm22bys Wed 16-Jul-08 13:00:01


DS2's muscle biopsy has shown an abnormal result - slightly reduced complex i (respiratory chain enzyme). Neither the neuro muscular guy nor the geneticist we saw at GOS were able to determine if it is the cause of Ds2's problems, so we awaiting their discussions with the metabolic people at GOS.

Do you know anything about Mitochondrial disease? What is the prognosis? Did your DC improve?


jimjamshaslefttheyurt Wed 16-Jul-08 17:13:02

I know its been implicated in regression following the MMR and autistic like symptoms.

THere are lots of different mitochondrial disorders though.

Check out carnitine (ask your paed). It can be helpful in some cases of mitochondrial disorder.

FioFio Wed 16-Jul-08 19:27:36

Message withdrawn

FioFio Wed 16-Jul-08 19:28:05

Message withdrawn

mm22bys Wed 16-Jul-08 21:50:24

Thanks, DS2 has been behind with his immunisations, but he only has the MMR to go, which if he's well he'll have in the next month (as will DS1, decided for them to have them at the same time).

The neuro guy at GOS said that it was only a little below the lower extremity of normal, so he didn't know if all DS's problems are down to it.

I have found some really sad stories on the web (as you do...) but hopefully we will have some answers within the next month or so.

From what I've read the only "treatment" is therpay, diet and supplements like carnitine.

The ped we saw at the CDC was very negative when she saw him back in September last year - we haven't had a review since then, but we have to see them in a month, we hope she will see some progress.....


PipinJo Wed 16-Jul-08 22:36:27

Message withdrawn at poster's request.

jimjamshaslefttheyurt Thu 17-Jul-08 22:26:27

this is a bit a nothing/pointlss article

The person to keep an eye on for information is David Kirby. He gets a lot of stick from many involved in the autism community, but his blog is bang up to date with any developments. He cites the references so you can go directly to the source and check what he's saying.

PipinJo Sat 19-Jul-08 23:59:41

Message withdrawn at poster's request.

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