For the infantile spasms Bethany was put on a course of prednisolone.  Initially a high dosage of 10mg four times a day was administered for a week and her blood pressure was checked every 6 hours and key levels of potassium etc in her blood was checked every two days.  At the end of this we did not have any significant change in spasm activity so the dosage was increased to 20mg three times a day for another week.

We did start to notice some improvement after this, however we did also start to notice some side effects related to her feeding - she would wake up crying in hunger, which she has never done before, and on the higher dose she would sound very gurgley and wet, and she would cough and splutter a fair amount of milk up through her nose, something she had not done since very young.

We know that prednisone is used for a lot of other things, such as for asthma suffers to relax their airways, as an anti-inflammatory and as a immuno-suppressant. Although due for her 6 month immunisations, we could not given them to her as with the prednisone these would potentially mean her immune system could not fight them off, as weak as they are.  We also needed to avoid contact with colds and flu and other infectious diseases as if she caught anything it would potentially mean she could catch a more serious case of it.  As it is an anti-inflammatory, it cannot be taken with some ibuprofen based pain killers, such as neurofen out here in Australia.

We conjecture that the muscle relaxant properties had an effect on Beth's larynx and swallowing ability as well as on her head control which has regressed a little.  We hope she will get this back as we come off the medication.  It is also possible that the spasms themselves have caused a level of regression in her development/abilities.

After a few days on the highest does we were let out of hospital and are now weaning her off it.  We are roughly halving the does every 5 days, so have gone from 20mg 3 times a day , to 20mg twice daily for 5 days, now 10mg twice daily for five days and finally 10mg once a day, then off completely.