Hi All,
My son is 5 weeks old today, on day 3 he was admitted to intensive care and lived there up until last Thursday when he was transferred to a regular childrens ward.
In the first few days at home we noticed occasionally he would shake, look 'distant' and then hiccup. We initially took this as him needing winding as otherwise things seemed fine. We were more concerned about the amount of sleep and lack of hunger in him which resulted in many phone calls to the midwife. Our first child was always hungry and never slept, so in our minds either he was the total opposite or something was not quite right.
On day three my wife was on the phone repeatedly trying to have a midwife visit, at this point he was in my arms when his eyes rolled up into the back of his head, he went bright red and his body curled up into a ball.
He was rushed into A&E and on to intensive care. He underwent CT scans and EEG scans to try and pin point what was wrong. Initially they thought his quick birth (bathroom floor in 15 mins) caused a swelling and bleed on the brain which in turn was causing the seizures and that hopefully this would heal and our baby had a good chance of recovery. Unfortunately this was not the case.
To fast forward... after under taking further CT scans, MRI, multiple EEGs , being hooked up for a week to a continous basic EEG machine, 3 lumber puntures, uncountable blood tests and a biopsy for muscle tissue the doctors now believe there was no swelling or bleed on the brain. The nuerologist called it either 'catastrophic' epilepsy or i believe he said Early Infantile Epileptic Encephalopathy.
He has been on 5 different drugs, none of which appear to have helped althoug hhe has had ups and downs - some days fitting every 45 minutes, other days going up to 5/6hours. Today he is fitting every 30 minutes. When he fits he really really stuggles to start breathing again, usually requires oxygen, sometimes manual intervention.
The latest they have tried is Vigabatrin, which has done little but kept him slightly more awake than the others (= more cuddles though).
As of tomorrow he is starting a ketogenic diet.
The doctors were blunt several weeks ago about his chances of survival and his life quality if he does survive. I find it hard to take as he seems so normal inbetween his seziures - he crys for cuddles, waves his arms and legs around with good strength.
I would be grateful to hear from anyone who maybe has been through similar, or just anyone wishing him well.
Love to All,
Jon, Nina, Nathaniel and Rafferty.
My son is 5 weeks old today, on day 3 he was admitted to intensive care and lived there up until last Thursday when he was transferred to a regular childrens ward.
In the first few days at home we noticed occasionally he would shake, look 'distant' and then hiccup. We initially took this as him needing winding as otherwise things seemed fine. We were more concerned about the amount of sleep and lack of hunger in him which resulted in many phone calls to the midwife. Our first child was always hungry and never slept, so in our minds either he was the total opposite or something was not quite right.
On day three my wife was on the phone repeatedly trying to have a midwife visit, at this point he was in my arms when his eyes rolled up into the back of his head, he went bright red and his body curled up into a ball.
He was rushed into A&E and on to intensive care. He underwent CT scans and EEG scans to try and pin point what was wrong. Initially they thought his quick birth (bathroom floor in 15 mins) caused a swelling and bleed on the brain which in turn was causing the seizures and that hopefully this would heal and our baby had a good chance of recovery. Unfortunately this was not the case.
To fast forward... after under taking further CT scans, MRI, multiple EEGs , being hooked up for a week to a continous basic EEG machine, 3 lumber puntures, uncountable blood tests and a biopsy for muscle tissue the doctors now believe there was no swelling or bleed on the brain. The nuerologist called it either 'catastrophic' epilepsy or i believe he said Early Infantile Epileptic Encephalopathy.
He has been on 5 different drugs, none of which appear to have helped althoug hhe has had ups and downs - some days fitting every 45 minutes, other days going up to 5/6hours. Today he is fitting every 30 minutes. When he fits he really really stuggles to start breathing again, usually requires oxygen, sometimes manual intervention.
The latest they have tried is Vigabatrin, which has done little but kept him slightly more awake than the others (= more cuddles though).
As of tomorrow he is starting a ketogenic diet.
The doctors were blunt several weeks ago about his chances of survival and his life quality if he does survive. I find it hard to take as he seems so normal inbetween his seziures - he crys for cuddles, waves his arms and legs around with good strength.
I would be grateful to hear from anyone who maybe has been through similar, or just anyone wishing him well.
Love to All,
Jon, Nina, Nathaniel and Rafferty.
