everything infantile spasms

My recommended resource list…


My recommended reading for family and friends –


My recommended virtual support groups…


Therapy sites I love…


My recommended testing to pursue – (I cannot emphasize enough how important it is to make sure the doctor treating your child has 1) experience with Infantile  Spasms complemented by knowing when they’re over their head and will refer you to someone with more 2) compassion 3) availability…one of the first questions I ask is Can I reach you By email?)

  • An EEG –  Chances are your child most likely had an EEG prior to a firm Infantile Spasms diagnosis.  But I strongly urge you to ask for an EEG mid-way through your course of ACTH.  And two weeks following the final injection.  Even though it is not fully understood how…ACTH calms the chaotic brain waves and can reveal a hidden focus/foci.  Those post ACTH EEGs played a vital part in Trevor being approved as a surgical candidate.  Which is why I passionately urge parents to beg…if need be…to have EEGs during their course of ACTH.  
  • An MRI –  An MRI will reveal an structural anomalies that may be the cause of seizures.  I recommend asking for either a 3T MRI (which is a higher resolution) or an MRI with contrast.  Of course making sure that there are no contraindications specific to your child.  There is no “protocol” in neurology…but I find most children receive an annual MRI.  
  • A PET Scan –  A PET scan differs from an MRI in that rather than revealing structural problems it reveals metobolic issues.  Damaged areas of the brain will metabolize or process sugars more slowly than healthy brain tissue.  Again…this is a good test to indicate if surgical intervention is possible.  
  • A MEG Scan –  The MEG scan is becoming a powerful tool in neurology and is thought to be as effective as an invasive EEG.  For those who may be unfamiliar – an invasive or intercranial EEG is when the skull is opened and electrodes are placed directly onto the brains surface.  The information can reveal precisely where the seizures are originating.  The MEG scan is a MUCH less invasive test – which can provide very similar data.
  • Genetics – for us genetics solved a huge piece of the Trevy puzzle.  His ARX gene had a mild unknown change and when they studies the pathology of his brain tissue we found grey matter heterotopia (a form of cortical dysplasia).  Brain malformation is linked to ARX changes.  If your child does not have a clear underlying cause, genetics can be helpful.   

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