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.
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
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..
Is there any aspect of your condition where you would support? 
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I hate to ask but i need to know…how long after the disease sets in do male children have before they lose the battle with this disease?