Please remember that we are not doctors and the sole purpose of the information is to chronicle our little Bethany's journey and to relay information that has been of assistance to us during this time. 

Seizures are a common occurrence for children with Lissencephaly and although they can begin at various ages, the only real conclusion is that they will begin sometime.  We held out hope that Beth might never have any, she was going so well, but the Lord had another plan.

Seizures can manifest very early on from a few weeks or a couple of months old through to much later - one child we heard of didn't have seizures until they were seven years old.  From discussion with other parents with liss children, it appears that the most common time for seizure to manifest is at or around 6 months of age. There is no clear reason why at this time, although seizures are often "triggered" by something - people suffering epilepsy can be triggered by flashing "strobe" lights - however in the case of liss, we have heard of tiredness, stress, growth spurts, weaning off the breast, weather and many others as triggers.

Seizures are essentially uncontrolled electrical activity within the brain.  Messages are transmitted around the brain as electrical impulses, however in the case of a seizure, these messages get all mixed up.  Seizures can manifest in many different forms, from "absent" seizures where the person simply becomes entirely unresponsive;  "staring" seizures where the person stares  for a period but may still be able to move limbs; through to the commonly known "grand mal" and "petit mal" seizures where one or more limbs trembles,  jerks or spasms; and "drop" seizures where the person looses all muscular control and falls to the ground like a faint. Each of these types of seizures may or may not impact breathing to some extent as well.  In general seizures are termed "epilepsy".  A cause of the seizures may or may not be known, in this case the lissencephaly is obviously root cause.

We were worried about when they were going to occur and would we recognise them etc, but seizures are pretty much unable to be missed, except perhaps in the very early stages. The key thing about detecting seizures, particularly in infants, is that it will be a abnormal behaviour, and it will be repetitive.  Often they may start out as short times but will then increase in either frequency or duration.

Seizures obviously don't help the child as they disrupt brain activity and also often after seizures the child will be tired and sleep for a period.  It is also evident that seizures can cause a child's development to regress somewhat - i.e. acquired skills may be reduced or lost if seizures are left untreated.  For these reasons it is important to recognise them and have a plan to treat them.

You can't do much with seizures.  All we could do was reassure Beth that we were there and to keep talking to her and cuddling her.  In some instances where a seizure episode goes on too long you may be able to administer a drug to stop it, but in Beth's case this wasn't necessary.  You really do feel out of control and out of your depth with them at first.  It was a very emotional time for us to deal with.

At least with Lissencephaly, seizures don't remain the same - they can change over time between different types and severities.  Hence a lot of the stuff we hear discussed on the lissencephaly mailing list is talk about various medications and effectiveness, side effects etc.

Beth started having seizures at around 6 months old.  Her initial seizures were an absent/staring kind.  We first noticed some abnormal behaviour in that she would look up and to the right.  At first we thought that perhaps she was just interested in something - she likes looking at light and shadow etc.  But these incidences became for frequent and longer in duration.  We took her into the emergency department at the hospital and this was the start of her first hospital stay for 5 days.  They observed her and the seizures and then put her onto medication (phenobarbitol) which proved effective at stopping these seizures however there were some side effects that we were not happy with - since that point until now we haven't seen our little girl smile, which has broken our hearts a bit.

We came home, and were only at home for three weeks when another type of seizure manifested - infantile spasms - around 7 months of age.  In this case her little arms and legs clenched in, sort of like a cross between a muscle man showing off his arms and her pulling her legs up like she's going to the toilet.  She would do this repeatedly, perhaps 10-20 times each episode.  Again these started to increase in duration and frequency and obviously in this situation the medication she was on was not helping control these.  We managed to discuss this with our neuro and paed in advance, but again as the spasms increased we went into the emergency department and this began her second hospital stay.  Again they observed and this time we had a plan about another treatment with prednisone (a cortico steroid) that we had discussed implementing.  We put her onto this, but due to the dosages involved needed to have her constantly monitored (blood pressure, blood tests) so she had to stay in this time for 12 days.