Niamh's Story in Detail
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Niamh's Journey
Tests & Medications
Further EEG's confirmed Niamh was having seizures, and we were told she had epilepsy.
I don’t think at that time we really knew what had hit us - at the time that fact she had epilepsy seemed
like the end of the world.
Further MRI's, brain ultrasounds, biopsies, bloods (and more metabolic tests
than I can remember), all came back normal so we were told we just had to wait and see.
Over the next 8 months Niamh’s condition deteriorated. As time went on, EEG results became progressively more chaotic and described as "highly abnormal although not displaying typical hysparythmia".
Her seizures came in all shapes and sizes, and changed from week to week. She had absences, eye flickering & eye deviations, lip smacking & salivating, retching & vomiting, breath holding, leg and arm lifting and stiffness through to full body shakes.
We tried a number of anti-convulsant drugs including Epilim, Pyridoxine, Phenetoin, Phenobarbitone, Carbamazepine; Vigabatrin, Nitrazapam, Prednisilone, Clonazepam, and Topirimate. These drugs were changed and increased in combinations of 3 or 4 at a time and any benefits seen were short-lived.
Her rescue drugs were Diazepam, Lorazepam, Midazolam and Paraldehyde but they started getting less and less effective the more we used them. By the time we were using them on a daily basis they had stopped working completely.
After spending what seemed like a lifetime on the internet looking for "cures" for my daughter I came across the Ketogenic Diet.
I made contact with a charity called "Matthew’s Friends" and explained our situation to the founder Emma. We agreed the Diet was probably Niamh's last hope, and somehow Emma worked miracles and convinced Great Ormond Street Hospital to take us on, despite Niamh being only 11 months.
By the time Niamh hit 11 months her seizures were almost continuous and had taken a massive toll on her development.
She couldn’t sit, she'd stopped focusing on objects and would not respond to voices.
She had poor head control and most of her movements were uncontrolled (& most likely seizure related.)
She had lost her ability to suck and swallow and had 2 bouts of broncholitis and 1 of pneumonia in 4 months.
Initial Diagnosis - 1 Year Old
The next month Niamh was taken into Great Ormond Street Hospital to have Telemetry done (to help diagnose her) and to start the Classical Ketogenic Diet.
The Telemetry revealed she had a condition called "Migrating Partial Epilepsy of Infancy" A devastating neurological disorder for which the prognosis is extremely poor and for which there is no cure.
With medical support it was agreed that we stop all her anticonvulsant drugs and focus on the ketogenic diet alone in an attempt to
make Niamh comfortable and to try and improve her quality of life while she was with us.
What happened 6 weeks later was totally unexpected.
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