Last week we hit a new turn in Mollys journey with the onset of seizures. Although she had a bout of seizures earlier in the month they were provoked by an infection, this time there didnt appear to be a reason? We decided its time to medicate Molly.
Strangely, I had accepted the concept that Angelman Syndrome almost always comes hand in hand with seizures - I just hadnt grasped the reality of it.
This has (is) a hugely emotional stage for all of us, especially Molly. Reading information on the different drugs available and their side effects is necessary but horrifying. We know that seizures in Angelman Syndrome can be hard to treat, in most cases needing multiple drugs and lots of trial and error. Our first experience with drugs has already ended badly adding further trauma for everyone involved. With the help of an amazing network of Angelman Syndrome families we have been able to research into a drug that we hope will work as successfully for Molly as it has for others.
This experience is another reminder of the lack of understanding into this debilitating Syndrome.
As we travel down this new road it strengthens our resolve to find a cure for our angel.
