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ITB Intrathecal baclofen update

(3 Posts)
zebrafinch Thu 17-May-12 13:09:24

Had a request for an update in Cp thread but posting here as may be more visible. DS16 years had IBT done november at Bristol. he has severe spasticity, quadriplegia, very strong extension pattern, was almost unseat able. We were pushing him around outside on a lying down three wheeeled buggy, he spent most of the day inside on an acheeva bed. The operation went very smoothly, no problems. For DS ITB has been a good success. We now have him sitting in a customised wheelchair for a good part of the day, the lying buggy has been ditched. He is much more relaxed and happy and the severe arching has definitely decreased. He wakes up from sleep smiling and happy before he used to wake up crying so I think now he is much much more comfortable. We are very glad he has had it done. The only downside is 3 monthly trips to Bristol to top up the pump but this is a minor inconvenience when viewed against he benefits. Obviously any procedure you are considering must be a decision based on your childs particular needs , for my son ITB has been a success and I wish now We had had it done sooner.

Antiopa12 Fri 29-Apr-16 04:22:50

have name changed
update
IT is now 4 years later.
my son has developed a very very severe scoliosis and I am now reading reports in the scientific press that intrathecal baclofen may be a factor in promoting scoliosis in young people who have not a mature skeleton.
PLease if you are considering ITB for your child fully discuss this with the doctors. It is too late for my son to have rods inserted for his scoliosis and he has chest complications that are life limiting.

Antiopa12 Fri 29-Apr-16 05:52:07

it may be that my son's scoliosis would have progressed this far without the baclofen pump. our children have unique medical histories and you must be guided by the clinicians who know your child . Yes research the benefits and risks of any intervention but get expert advice on how these apply to your child.

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