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Ian is a special boy who has a brain malformation called Lissencephaly (he has a smooth brain) as a result he has epilepsy and is profound development delay. Ian does not have food or medications orally it is all done via a button (called a mic-key). Ian cannot support or assist himself and has poor neck control, can be very floppy. Tiredness, colds/infections and stress can trigger Ian?s seizures. Sometimes there is no obvious cause. | ||||||||||||||||
| This is Ian's story. | |||||||||||||||||
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| Ian was born on the 16th of May 1997 at 12.35pm, weighing 2920grams and for the next few months everything progressed more or less normally.� It was not until Ian was about four months old before the first hints of trouble, Ian was not feeding very well and not sleeping no more than a few hours at a time. We were assured that it was only colic.� Ian was progressively getting he would tire easily but would still only sleep for a hour at a time, feed very slowly and was not putting on weight. The weeks before Christmas 1997 Ian was showing sign of not developing such as he was very little head control. | |||||||||||||||||
| On Christmas Eve 1997, after Ian was restless all night, by the morning Ian was ridged and was not responding to anything. So we to the emergency department of the local private hospital. While breast feeding Ian went into a grand mal seizure. For the next couple of days Ian would have a grand mal every three hours this was until the epileptic medications reached their proper levels. During this period Ian had a C.A.T. scan we where told Ian had a slight brain malformation probably Lissencephaly(the Doctors avoided telling us what it meant. An EEG was also done and it showed consent unusual brain activity and he was further diagnosed with a condition called infantile spasms (a severe type of epilepsy). | |||||||||||||||||
| In Febraury1998 Ian was officially diagnosed with Lissencephaly. Up until Easter 1998 Ian seams to be going very well eating three large meals per day. Ian was happy and contented and gaining weight smiling and quite connected in his own world. Nevertheless, by Ians first birthday he was having grand mal seizures again. This lead to numerous hospital visit and eventually reoccurring chest infections. In June 1998 Ian had a M.I.R. PET. and EEG. The M.I.R. showed severe malformation of the brain. Eventually by September 1998 he was started on nasal gastric tube. | |||||||||||||||||
| By July 1999 Ian had a g-tube inserted and by April 2000 this was replaced by a button and now this has recently been replaced by a Mickey button. | |||||||||||||||||
| After Ian had the g-tube inserted he had less seizures for a couple of months during this period Ian started to roll over and lift his head up. Then just before Christmas 1999 Ian has had recurring chest infections and bouts of increased fitting. | |||||||||||||||||
| During the past year Ian has had many stays in hospital and multiple bouts of pneumonia. This has also lead to Ian losing the little abilities that he had. In the last few weeks Ian has started to giggle again. | |||||||||||||||||