My son has epilepsy

It started when he was a newborn.  He was ambulanced back to the hospital at 2 days of age because he stopped breathing.  He was having grand mal seizures.  They put him on a breathing/heart monitor and Tegretol for 6 months.  Then then took him off the meds.  He seemed to be doing fine so they just said it was "fluke."  At 18 months he started having seizures with a fever.  Ped neuro said to give him Valium with any febrile illness.  I did that for awhile, then stopped as they didn't seem to come back.  Over the years I noticed strange jerky like movements (like a baby's startle reflexes). I was the only one to notice them.  Everyone else thought I was crazy...just imagining them.  I insisted that something wasn't "quite right" with my son.  Doctor suggested maybe it was a benign movement disorder and nothing to worry about.  Finally last year (he was 7) I put my foot down and insisted we get him tested (I should have done it a lot sooner).  My husband thought I was being silly...wasting our time and money.  I told him I didn't care and that he was my son and I was doing it with or without his support.  Well, I convinced his pediatrician to order an EEG (he wouldn't give me a referral to a neurologist, but agreed--to humor me--to order an EEG).  The EEG was very abnormal.  He was having a seizure almost once per minute.  They weren't grand mal...just slight little jerks...but they would last 5 or 6 seconds each time.  I got my referral to the ped neuro the next week.  It really explained so much.  My son was in 1st grade (end of the year), yet could barely read, couldn't write.  He was at the bottom of his class...because once a minute his poor little brain would just shut down.  He couldn't hear the lesson...he couldn't learn.

They tried him on Zonegran.  It increased his seizures to every 15 seconds.  He was then tried on Depakote.  It completely stopped his seizures.  He has been in special ed this school year and is almost up to grade level now.  His last EEG was completely normal.  I'm so glad we got him diagnosed and started him on treatment.  He is taking Depakote 375 mg in the a.m. and 375 mg in the p.m.

Next May they are going to take him off his meds to see if he still needs them.  I'm praying he won't...but if he does, he does.

There are a lot of great online support groups for parents/grandparents with kids who have seizures.  If you'd like to e-mail me, I'd be happy to share them with you.

Kiss your grandbaby!  You're a great grandma!

Chickadee

• Could use some personal input on infant seizures. sm - Gram
  • seizures - 2 hours long - kathkeane
  • My son has epilepsy - Chickadee
  • My son HAD seizures.....(SM) - AzMT
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