Re: Seizures - Cerebral Atrophy

Posted By Mark on June 21, 1999 at 09:04:31
Hi,
My name is Mark and I come from Dublin, in Ireland. I have a 18 month old son who was born with severe celerbral atrophy. He suffers from regular seizures (lasting up to one hour), he is blind and unable to walk but is sensitive to touch. The doctors can't seem to regulate his seizures with medication. I don't even know if you are the right people to contact but I need help and more information about the condition because the doctors don't seem to be telling us much. If there is anyway that you can help by way of contacts or information it would be forever appreciated.
Thank you for taking the time to read this.
Mark

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on June 21, 1999 at 14:12:55
Dear Mark:
I am very sorry to hear about your son.  My the wording of your posting the atrophy is gobal, meaning that it is everywhere in the brain.  What was the etiology of the atrophy, was there severe hypoxia at birth, infection, etc.  When your son's doctors look at the MRI, do they mention leukodystrophy(demyelinating process)? The etiology of this might also be important to your family if you are considering other children.
With the total cerebrums involved, it is difficult to control seizures (a process that your are familiar with already).  I am not sure what medications he has been tried on, likely many.  If the atrophy is localized to one hemisphere, one can consider epilepsy surgery.  However, if there is widespread atrophy in both hemispheres then this type of corrective surgery is not possible.  There is the ketogenic diet, this diet is high in fat and low in carbohydrate and protein that your epilepsy doctors might have mentioned.  This might help.  There are always new medications being tried.  One that seems to have benefit in intractible seizures is vigabatrin or Sabril.  It is not available in the US but in Europe I think it might be available.  Lamictal has also been found
beneficial in some types of intractible seizures.
I wish you God's grace in dealing with your son.  Raising children is difficult at best and when your child has a devastating problem it makes it extremely hard on the family.  Hang in there and love your son as best you can.  Let us know what questions you have.
Sincerely,
CCF Neuro[P] MD

[Rose__0]

Posted By Rose on June 22, 1999 at 16:01:15
Dear Doctor;
   I am sorry to have to tag on to someone elses question, but I am a little desperate.  My mother has seizures like the child in the above post.   For the past month we have been in the emergency room at least once a week, sometimes two times a week.  The medicines (neurontin) are not doing her any good.  Her last seizure lasted approx. 8 hours before she woke up.  She did not wake up this morning so she is in the emergency room now.  She is in the last stages of alzheimers and is being cared for at at home - she has no other life-threatening illnesses.  Her doctors (primary care) has basically told us not to bring her to the emergency any more - that she is old (79) and to just let her die in peace - but this is Mom - and we want to do anything we can for her.  
   My questions: 1. She was scheduled to see a new neurologist on tomorrow (which we have to cancel) but would it be beneficial to show him your above post regarding the medicines? 2. Can these medicines be used for my mother as well as for this young child? 3. Are these seizures typical for alzheimers?  Do you think we are overly concerned and should just relax (the doctor's suggestion)  What is your suggestion as to what we should do when she has one of this long-lasting seizures (we usually wait an hour before we call fire-rescue).

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on June 22, 1999 at 18:08:39
Dear Rose:
Sorry to hear about your mother.  The type of seizure medication depends on the type of seizures.  Neurontin is basically an add-on medication for partial epilepsy type seizures.  Most of us do not use it first line but if the reason is sufficient and other medications are not indicated for some reason, we have used neurontin as single agent therapy in the past.  However, most of us think you have to increase the dose to 2400 and above to get success.  
I would recommend seeing a neurologist.  For one thing, he could give you medications to stop seizures so you wouldn't have to bring your mother to the ED.  There is a rectal prep of valium called diastat that would do the trick.  Second, it would help to define what type of seizures your mother is having.  If they are focal or generalized and then get her on the proper medication or at least up the neurontin dose.  
Even with Alzeheimer's I wouldn't allow my mother to seize away for hours on end.  Although one has to weigh the balance between how far along her disease is and the side effects of the possible medications.  I still think that you and your family plus a neurologist should evaluate the above together and make a plan of attack.
Sincerely,
CCF Neuro[P] MD










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