Everything Trevy

Trevy's Seizures - if you suspect your child is having seizures I cannot emphasize enough the power of a video clip!  Also remember the intensity in person is 10x what can be captured with a simple video clip, so while it may seem that his seizures aren't too bad from your angle...from ours they were devastating our life and stealing our son. 
  • Original Clip - Trevy was 7 1/2 months old
  • Original Clip II - same sequence
  • Relapse Clip - his relapse of spasms was SO subtle the chief of pedi neurology at our local hospital thought it was just a sort of tic...my heart knew better
  • Vigabatrin Clip - Trevy's seizures intensified to the point that he would almost be knocked off his feet 
  • Right-sided Clip - at times Trevy's seizures would be very right-sided which was a very important piece of data during the surgical committee's meeting 
  • Lip Smacking - Trevy would often smack his lips and pick at things during clusters.  We learned in Detroit that these were complex partial seizures.

Trevy in the News
  • Drug Money - by Russ Mitchell
  • The High Price of a Rare Disease - ABC news 
  • JEC testimony - I was asked to testify on Capitol Hill before the Joint Economic Committee regarding Questcor's price hike of Acthar and how it effected our family 
  • Fall River Herald - Trevy made a cover story of our local news as part of a new Special Olympics program in our area! 

Trevy's Team - looking back from here...it's easy to see how all the right people were brought alongside us for this journey.

  • His Family - Daddy, Mommy, amazing big brother Toby, adorable big sister Bristel, babysitters extraordinaire Grams and Pop pop, inspirational Africa dwelling Bibi...and our very rambunctious puppy, Callie. 
  • Dr. Neuro - she's been with us from the beginning and has been a huge advocate and encourager of hope.  She makes herself available via email...which is a big bonus! 
  • Dr. Pedi - we have been through several pediatricians since Trevy's diagnosis.  I feel passionately that we need someone working with us who understands what we're living with as much as possible.  
  • Dr. Genes - it's rare to find a doctor so passionate about their patients...we consider her a true gem!  She was a huge part of the reason our insurance approved Trevy's radical surgery with a hospital SO far out of our network.
  • Dr. Rockstar - It didn't take me very long to learn about him.  He's a bit of a legend in the IS community.  And somewhere along the way...I started referring to him as Dr. Rockstar.  Truth is...there's no easy way to sum up how we feel about Harry Chugani of Detroit Medical Center.  Undoubtedly we owe a large chunk of our heart's gratitude to this man.  October 9, 2009,  we entrusted our heart...in the form of our two year old son...to the leadership and direction of him.  Dr. Chugani recommended Trevor for  the most radical brain surgical intervention science offers today - a Hemispherectomy.  If you have a child with Infantile Spasms and are considering surgical intervention...I recommend contacting Dr. Chugani for advice.  Not every child with IS will be a surgical candidate.  But Dr. Chugani is by far one of the most agressive and experienced in the field.  During Trevor's recovery I thanked him personally on behalf of the IS community for making himself available to field our questions via email .  He responded, "I deeply believe no family should have to live with catastrophic epilepsy alone".  I wish there were more Chuganis in the world of neurology.  
  • Dr. Developmental Pediatrician - she follows his development and makes recommendations for therapies and testing   

Trevy's Meds - starting from current (green) and trailing back to the beginning, including dosages, effectiveness and other thoughts 

  • Trileptal (generic 5.5mls 2x daily) - this was introduced during surgery and we've stayed with it.  At times I've wondered about it's efficacy but we had some recent seizure breakthroughs and when we increased the Trileptal it seemed to do the trick. 
  • Dilantin (generic 3mls 2x daily) - also introduced during surgery.  
  • Topomax (generic 75 mgs 2x daily)  - I don't fully understand but Dr. Neuro claims Topomax is a neuro protector and therefore will not agree to wean him off even though it was fully ineffective in controlling his spasms.
  •  Acthar - After battling insurance for week over coverage (one 5ml vial of Acthar costs approx. $30,000 - Trevor needed 5.  I have a lot to say on this subject.  To read my thoughts click here.) Trevy was started on a high dose course of Acthar.  75 mls once a day administered via intramuscular injection.  The treatment was initiated in-patient where we stayed for 3 days.  Once home we had the assistance of a visiting nurse for the first week.  I'll never forget that first home injection.  I laid across my little 7 month old son to hold him still...while my husband drew the gel into a VERY large syringe, sterilized the area, and tears streaming pushed the thick gel into our screaming son's thigh.  It was such an emotion charged moment that even the nurse wept with us.  That first round of Acthar achieved remission.  Neurologists use the term remission because there is no cure for epilepsy.  Trevy had minimal side effects...cranky, clingy, elevated blood pressure which was controlled with Enalipril, increased appetite and did have a raging ear infection which required intravenous antibiotics to control.  Trevy was seizure free by the fourth injection and for 8 additional months following that first round of Acthar.       
Topiramate - 75 mgs AM & PM
Clonazpem - 0.125 PM
B6 - 100mgs AM & PM
Meds we've tried -
Banzel - max dose 300 mgs am & PM
Vigabatrin - max dose was 1000 mgs AM & PM
ACTH (11/07-12/08) - 5 weeks @ 60 units per injection
Enalapril - 1x daily to control BP while on ACTH (peaked at 155/91)
Zantac - 2x daily to prevent GI bleeds (among other tummy issues) while on ACTH
8 months seizure & med free

ACTH (09/08-10/08) - 5 weeks @ 75 units per injection
Zantac - 2x daily
Zonisamide (09/08-12/08) - max dose 75mgs AM & PM
EEG - Trevor has had 5 and each one has shown abnormal brain waves which appear to be focalized in his left hemisphere
MRI - Trevor has had 2 w/o contrast - no abnormalities were found
3T MRI - @ Boston Children's revealed PVL
PET Scan - left temporal & frontal lobe abnormalities

Therapies -
EI Speech Therapy - once weekly
EI Physical Therapy - once monthly
EI Occupational Therapy - twice monthly (focusing on Trevor's right sided reflexes & other fine motor issues)
Play Therapy - once weekly (focusing on appropriate toy exploration & eye contact)
Groden - weekly play group