After weaning of the prednisone, Beth continued to have infantile spasms, although greatly reduced.  We have not seen as yet any more of the 10-20 minute seizures, what we do see if generally 1-2 minute or less episodes, at about the same frequency.  So in that sense the prednisone was effective.

To supplement this and to try and gain further seizure control, the neurologist has put Beth onto vigabatrin.  We initially steered clear of this drug due to the known side effect that after prolonged use it leads to peripheral vision loss.  Apparently this effect occurs after approx 2 years of use, and is not dosage dependent, but duration dependent.

We started Beth on a low dosage (125mg twice daily) but with no significant effects. Over the following month we increased the dosage, and now she is upto 750mg twice daily, with a small improvement, but it has not stopped the seizures totally.

During this time we were also able to wean Beth off phenobarbitol, which has been a real victory - Beth is now much more alert and responsive once again.  This appears to be a good thing concerning vigabatrin - there does not appear to be any major mood altering or drowsiness or other side effects that we have noticed for Beth.  We have also even started to get a couple of small smiles back which has been great!

Our neurologist has outlined a plan about where to go from here, and that is to look at other drug options such as valporate (Epilim) to add to the Vigabatrin.