How effective is Baclofen pump? What ... - Leukodystrophy Su...

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How effective is Baclofen pump? What are its risks?

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Last week, a family got in touch on Facebook requesting advice and support about Baclofen pump. Before going ahead with the treatment, they would like to hear your views on how effective Baclofen pump is, or whether Baclofen pump is risky.

If you have anything you would like to share, please respond below.

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NickiGivin profile image
NickiGivin

Hi, I remember being offered a baclofen pump for my son Shea. At the time it seemed like the answer to all our problems but after weighing up all the pros and cons we decided against it. Our wishes are to spend as little time as possible in hospital and we thought having the pump fitted may lead to more and more hospital admissions. I think it depends on what your wishes are. Our

consultants were good and worked with us to increase Shea's baclofen to a level that suited him. Children with ALD cannot be text book and neither can their medication.

If you want to contact me to talk anymore, then ask Sara for my email and I'd be happy to stay in touch x

wayne01 profile image
wayne01

Instead of using the baclofen pump,what medication do you use?my boy is on 10ml baclofen 4 times a day but doesn't seem to relax him..

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