We took Jude to the Children’s Hospital on Saturday to get some feedback on his most recent EEG and the results are not good, depressing in fact.
Jude has always had a lot of ‘activity’ going on…and not good activity. Most of his treatment so far has been to try and resolve this – first there was Vigabatrin and then a number of ACTH/Prednisolone treatments. Vigabatrin seemed to have no effect and the ACTH/Prednisolone only worked during the administration of the drug and it is not the sort of drug therapy that can be used long term.
Our consultant has effectively said that there is no benefit in continually putting Jude through such stressful treatment with little hope of long term gain. The best we can hope for is control of the seizures which have improved under the current medication regime.
We’re going to give Vigabatrin another go – not with the intention of resolving the background activity but because when he did try it in his early months it did seem to give him a lift and reducing the visible symptoms. In time, we might also look at the Ketogenic Diet.
On Tuesday we hope that Jude will have his button in place for his feeding tube – we’ve all had enough of this tube and the constant problems we’re having with it. Hopefully it won’t cause him too much distress!
In nearly 2 years of life Jude has had obstacle after obstacle placed in front of him. He batters his way through them leaving debris in his wake rather than clears them – disappointing as it is, Jude has been through so much for so little and at times we were worried we risked losing him…perhaps a different approach might bring different rewards.