Regular readers will know of our fun experiences with ACTH last year. It’s a double edged sword – it works, but boy does it cause problems and one very unhappy little boy.
The results of his EEG were not encouraging – I have forgotten the exact terms used in the letter but Jude has multiple seizure types with an EEG showing slow wave form in the background and intermittent spikes – a pattern characteristic of Lennox Gastaut Syndrome but they haven’t said anything to us yet so it is guess work on my part. Even if it is LGS, it makes no difference – it’s just a label.
ACTH is used in Infantile Spasms as a first line treatment and it cleared up Jude’s IS last year on two occasions. When Jude relapsed last summer and the IS returned it was pretty obvious. He became flat, unresponsive and we saw the specific type of spasm associated with IS. Now, Jude isn’t flat and unresponsive and I’m going to be pretty down on myself if the IS has returned and we missed it. But (and thank you google again), ACTH can also be used to treat myoclonic siezures so maybe that’s the reason.
Google says I should also ask the doctor. Shows how much google knows.
Due to Jude’s past history with ACTH they are going to do it as an inpatient at the Childrens Hospital for a week and then continue with prednisolone for a few weeks (I assume at home).
They say they don’t want to start it for a few weeks to give Jude a rest after his recent traumas………I think they might look at Rachel and me and think it’s us that needs the rest more!
Jude is probably going to be discharged tomorrow but the next few months are going to be busy – as well as the ACTH therapy there will be further surgery in 3 months or so to make his feeding tube a button which will sith much closer to his abdomen. Depending on the result of an upcoming xray they may also do some surgery to deal with Jude’s reflux. And there is an appointment with an eye specialist – possibly to do the EEG that measures how/if he processes visually.