Outlook bleak with more fitting

I’m afraid that once again the latest news about Abigail is not good. A week after Abby was re-admitted to hospital following a routine consultant appointment, the prognosis for her is if anything more bleak than before. Over last weekend Abby seemed to be fitting more and more and despite the fact that she was back on a general anti-convulsant drug, she also had to have several courses of an immediate anti-convulsant administered by injection during some episodes. The vast majority of Abigail’s feeds are now by naso-gastric tube again, although the occasional one has been managed orally.

On Tuesday Abby was taken up to King’s College Hospital in London once again for an EEG brain scan that would determine that specific area of the brain that was fitting and therefore be a guide to what medication might more readily bring the episodes under control. We got the results of that EEG today (Thursday) and Abigail’s consultant has also liaised with an neurological consultant from Guy’s Hospital in London about possible courses of action concerning her medication levels.

Nix and I have been very low this last week as we’ve watched Abby helpless and in a lot of distress through her frequent fitting episodes. The better news is that doctors feel although Abby’s fitting is more of a challenge than first envisaged, they do think they'll eventually get her medication right so that her episodes are much more under control. The bad news is that with Abby now over seven weeks old and showing few signs of making much ‘normal’ developmental progress, the outlook for her seems to be getting bleaker.

The EEG results showed that in addition to her outward fits, she is experiencing many sub-clinical fits which do not manifest themselves externally at all. The upshot of this is that Abigail is fitting pretty much all the time. Although her fits are not causing more brain damage, they are now seriously impeding her child development and doctors feel that not only might she be heavily delayed in reaching her ‘milestones’, she may well never reach some of them at all. Her sight is a particular worry and we do fear that she is not seeing properly at the moment, if at all.

Finally, we did ask Abigail’s consultant about the prognosis on her life as a result of all this. She said that although doctors are not overly concerned for her at this stage, the outlook for Abby is not very good and notoriously difficult to predict with any certainty. She said that she had seen children with similar problems to Abigail who had not made it to their first birthday and others who were in their twenties, but that it was certain that she would not live to ‘normal’ old age. This is more attributable to her fitting (probable epilepsy) than to cerebral palsy or any specific mental deficiency.

As you can imagine this has been incredibly difficult news to digest and we really do feel very low indeed. We feel torturously torn between wanting our daughter to live and experience life and all that it (and we) can offer her, and the awful thought of not wanting her to suffer as she so clearly is at the moment. We are hoping that the doctors can alleviate at least some of the burden of these energy-sapping fits very soon. We’re also having to face telling our other two children, Rebekah (4) and Joshua (2) much more about the seriousness of Abigail’s condition than we previously wanted to.