Infantile Myoclonic Epilepsy and Neurotin and Honeymoon period

[Paul-Copeland]

  Hello from Australia.
  Dear doctor, you have kindly responded to my 3 previous posts and I would
  like some more advice from you. Thank you.
  Our foster child Grant started having seizures 36 hours after birth.
  He was diagnosed as having Infantile Myoclonic Epilipsy with
  developmental delay. He is now in a wheel chair, cannot speak
  and is totally dependent upon us for his needs. He is now 10 years old.
  About 5 weeks ago he started on 300 mg capsules Gabapentin/Neurontin
  3 times daily. He is not on anything else.
  He went without a seizure for 20 day!! (we were thrilled) and since then
  has had 2 seizures at 7 day intervals :-((
  You mentioned a honeymoon period with a new medication where a medication
  may work well when initially introduced and then lose its efficency.
  My questions are.
  1.  Would it be possible for Grant to have the Neurontin for say 5 days
  and then be off for 2 days (so as to reduce the amount of Neurontin
  in the system)? Perhaps the honeymoon period would last longer
  if we kept him off medication for a couple of days each week.
  2.  Sometimes we can sense that a big seizure is not far off. This happens
  when Grant's small seizures come closer together. Would it be useful at
  this time to give Grant say 600 mgs of Neurontin in the hope that the big
  seizure wouldn't occur? (Our neurologist says that we can't give Grant
  rectal Valium at this time as we may need it if Grant has the big seizure).
  
  Thank you for your continuing assistance.
Dear Mr. Copeland:
Sorry to hear of your son's break through seizures.  We are not really sure what causes the honeymoon period with the addition of new medications.  It may have something to do to receptor density or just the responsiveness of the abnormal neuronal connections causing the seizures.  I really don't think that with-holding the neurontin then giving it will have much of an effect.  Neurontin was one of the first designer medications for epilepsy, it was made to be a GABA agonist and bind the GABA receptor, therefore tuning down the excitatory responses inducing the seizure event.  However, for some reason it doesn't act in the body in that manner.  By the literature, it does not have a good response to controlling myoclonic seizures, but I guess your son's seizures did not read the literature.  I am happy that neurontin has somewhat controlled his seizures.  The dose that your giving Grant is a relatively small dose, as we have used up to 4,000 mg per day in controlling some seizures.  I am not sure what to tell you.  I guess you could try your plan, but it hasn't worked with other patients in the past.  But then again, neurontin isn't suppose to control myoclonic seizures and your son has done well.  You may want to ask your doctors about raising the dose.  Neurontin has few side effects so giving an added dose wouldn't induce more side effects and worry.  I wish I could tell you of some great new discovery but outside of the ketogenic diet, we don't have much to control infantile myoclonic seizures other than what you have already tried.  Have a happy new year and keep in touch.
Sincerely,
CCF Neuro[P] MD, RPS