Searching for answers

As they say, “The answer is out there”…. I’m not so sure all answer’s are out there, at least not yet, and frustratingly I have been searching for understanding, techniques and interventions to help our son.

Following a recent review we have been looking anew at how our son is being affected by his complex disabilities, in particular his Epilepsy and Autism. To assist our sons neurologist we track, types of seizures, duration, frequency, after effects, side effects etc. When it is charted, we can clearly see a deterioration in his condition and a significant increase in seizures. Coupled with this, is additional work done to track behaviour for his Psychiatrist. Moods, appetite, interest, interaction, and timing in relation to seizures etc.

I have learned that there is a relationship between seizures and anxiety, which can lead to a diagnosis of Epilepsy, when actually it is more linked (in our case) to Autism. ‘Non Epileptic Attach Disorder’ it is called and even has an acronym, ‘NEAD’. Trying to find help to understand how to distinguish between the two has been so far impossible, even though a very comprehensive document has been written.

My belief is that we should seek interventions by which we can ease our sons anxieties and through this, reduce the higher level of seizures which are not being managed through medication. My search has taken me to the USA and Australia and through my continually asking the questions and posing und our position, I have been helped, not with distinguishing the differences of basis of the seizure, but in trying to address some of the anxieties he has.

I have subscribed to a course of ‘Cognitive Behavioural Intervention’ (CBI). This is a modification of CBT aimed at those with Autistic Spectrum Disorder (ASD). Will it help? I don’t know yet, but I am hopeful, as I am a firm believer and one time user in business of CBT and NLP. I listened to a radio interview today with a leading neurologist who was saying that we just don’t know enough of Autism or Epilepsy and no great steps forward have been achieved, with very few people taking up neurology as a profession. This may explain why we have just been prescribed an array of medication and are no further forward in helping our son.

My challenge is to find a way to help our son understand what we will be working on together that will make sense and help focus and calm his fears. Maybe if we can do this, we will see a reduction in the number and frequency of his seizures, and then maybe, the medication can treat more successfully that which remains.

The answer is out there, maybe, just maybe, I may find it ourselves!

6 thoughts on “Searching

  1. Well written, Paul.
    If any one can find the answers by research, by prompting medical specialists with relevant and persistent questions it will be you. I know your dedication and believe that your pushing for answers will bear fruit and help in Marc’s case and other similar cases.

  2. Hi Paul,
    This must be very frustrating for you, because just reading this gives me anxiety. I don’t know if you have heard of the drug Topamax. I take it everyday for a preventative for migraines and as one of my drugs cocktail for my mental heath problem. But this drug was/ initially for people with epilepsy /and or seizures. It works wonders for my mood. I’m just curious if you know this drug? The drug is also called topiramate.

    Lots of Hugs Diane

    1. Hi Diane,
      Yes indee! Topiramate is an anticonvulsant that we have also tried. Sadly it did not reduce the seizures and other unpleasant side effects suffered did result in our stopping it and trying others.

      Thank you for asking and your suggestion


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