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Advice on diagnoses please

(2 Posts)
Lucyb88 Tue 05-Jan-16 15:25:34

Hi my 5 year old has been under investigation for 3 years with numerous test carried out up the evelina in London. He has mobility problems, speech and language and swallowing difficulties, and what seems like a 100 other problems. So the tests that have shown things are his MRI scan which showed 'white matter changes' in the brain, they say his got leukodystrophy but are just linking it to his diagnoses of SPG7. An EEG which showed his brain waves were slow for his age and he has a tendency to seizures. His genetics showed that he has hereditary spastic paraperesis (SPG7) but he only has this on one long arm of the chromosome which means that for it to have any affect then he would need it on both long arms. It really frustrating me as we know it's a progressive condition and just lately like the past few weeks he has barely been able to walk. He started on trihexyphenadyl and baclofen 5 weeks ago, could anyone who knows anything about these meds please tell me if there is any chance that this could be the reason for the rapid decline in mobility? I'm hoping it's the meds and not his condition deteriorating. Thanks in advance.

Anomia10 Tue 05-Jan-16 21:33:33

What dose baclofen?

I take 30 - 50 mg a day as an adult. At that dose, it has no effect on mobility, although I understand if you take enough of it, you are unable to hold yourself upright - as its a muscle relaxant! I don't know anything about any of the other stuff you talk about with regard to dc.

The main side effects I experience are disturbed sleep and tiredness. It enhances the effects of alcohol by about 6 times, not that will be a problem for dc. If I run out and come off it abruptly, my mind goes haywire!

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