Forced Normalization?!! Are you kidding me? What other weird conditions is Bethany going to have to endure? Hasn’t she suffered enough torture already?
I received a call from Bethany’s Neurologist Friday. He informed me that although her medication blood level for Depakote was slightly high it was still in the normal range. In fact, all her medication levels were in the normal range. Apparently, the ER physician was erring on the conservative and safe side when he advised us that she might have too much medication in her system! However, we are still reducing her medication dosages slightly just in case!
So….now what? Why is Bethany so fatigued that she sleeps until 11:30 am, lays on the couch in a fog all day, and then wants to go back to bed by 6:30 pm? Why does she swerve, stagger and stumble her way back and forth from the bedroom to the couch and back to the bedroom again? Just last evening when I gave her a shower she nearly fell flat on her face. If I hadn’t caught her she might have gotten seriously hurt. Why is her speech slurred? Why has she suddenly stopped eating hardly anything at all after eating so much that she gained nearly fifteen pounds in just a couple of weeks? Why does she still think she is having seizures even though she has not had one in six weeks? My Inquiring mind wants to know!
It could be that as the good doctor (Neurologist) suggested, she may be suffering from a strange phenomenon call, “Forced Normalization“. The way he explained this strange condition to me is that sometimes people who have had intractable seizures (seizures that don’t respond to treatment) for a very long time, and then suddenly do become seizure free, well their brains just don’t quite know how to respond to this strange new state of being. These suddenly seizure free brains can’t handle it and kind of shut down and become depressed or psychotic!
Isn’t that lovely! It’s scary to think about, but this explanation actually makes more sense than any other explanation we’ve gotten for her behavior so far. But what do we do about it….That is the question! I have been googling it all day. So far I have only come up with vague and frightening definitions of the condition but no real suggestions on how to treat it. I guess I’ll be googling a little more!!
If you would like to read a little about Forced Normalization just click on the links below!
Forced Normalization Phenomena in Out Patient Clinic For Epilepsy
Alternative Psychoses (forced normalisation) In Epilepsy
While we have never really expected that Bethany would ever become totally cured of all her “excentricities”, we have always held out hope and been under the impression that when and if we were ever able to get the seizures under control that her quality of life would dramatically improve. Sadly, that does not seem to be the case for Bethany :(. Really…just how much does she have to go through?
Yet somehow we still hold out hope for a better life for Bethany someday. God can do anything! He can improve her quality of life! Heck, He could completely cure her if that’s His plan for her! We will not give up the good fight! We will continue to pray for a miracle while at the same time we will also pray for endurance and the strength to accept whatever may come!
But…on a more positive note, we do have some not so insignificant good news to share for a change!!! While we were in the ER they did a CT scan of Bethany’s brain and although she does still have a very weird and damaged brain there was NO sign of tumor regrowth which of course we are very elated about! She has been acting EXACTLY how she acted when she had brain cancer (minus the vomiting) so we were slightly worried that perhaps the cancer had returned even though we knew that after twelve years of being cancer free it would be very unlikely. So we do have praises for and thanks to our Heavenly Father despite our angst and uncertainty, and we will carry on!