Little JP update, Thursday March 29th

Hi everybody, a quick update on little JP.

Since the good news of last week, things have kind of settled a bit, although we did get word that while his EEG didn't have any hypssarhythmia, it did have a bit of other irregular seizure like activity (waveforms in his brain, not ACTUAL seizures that we can see). While we knew very well that he will always be prone to other seizure types now, this news confirmed that while the infantile spasms are now controlled, there is potential for him to have other seizures essentially at any moment. It's possible he may not have any ever, or it could be tomorrow that he has several. We simply don't know. All we do know is that day by day we try to appreciate the fact that he is not seizing, and that is a good thing.

We are currently trying to figure out whether we can treat this irregular brain activity or not. Pediatric Neurologists are split on whether to treat these irregular brain waves even if there isn't actual seizures going along with it. Our Neurologist is on the side of not treating the abnormal EEG findings unless there is actual seizure activity along with it. For now, we'll be monitoring him closely as normal.

This EEG finding really reminded us clearly that we are on thin ice at the moment. We hope to get to more solid footing at some point with a true clean EEG that doesn't show abnormalities. It may take awhile but we hope we are there at some point.

As we are currently weaning him off of the ACTH (the steroids),  his personality is coming back just slightly, as we are catching a few smiles here and there and seeing more of his personality. It's very refreshing as we really haven't seen much of that for nearly a month. He only needs 5 more injections of this medication until we are finished. He will continue to stay on his Vigabatrin indefinitely as this point as that is the medication that controlled the spasms.

That's it for now. Take care everybody!
The Seivane Clan