When Katarina was around 3 months old we noticed that her body sometimes - especially when she had just woke up - suddenly jerked. Those jerks appeared in series, a few at a time. We asked different doctors what they might be, but received no specific answeres. Someone said that all infants use to jerk, especially when going to sleep or waking up, but our local pediatrist at least put her up for consultancy with a neurologist.
At eight months of age Katarina caught pneumonia and faced prominent breathing difficulties and was admitted to ICU. There she stayed put for several months and finally the nurses noticed the jerks and an EEG was ordered. It showed very small abnormalities and Katarina was put on a low dose of Fenobarbitals.
Katarina was put up for a follow up EEG, which was performed when seh was 14 months, one month after she got back home from her four-months period in hospital. This EEG led to immediate admittance to hospital again, for tests and treatment. Because now the EEG showed a significant hypsarythmy, an EEG characteristic for infantile spasm - West Syndrome - BNS-seizures. Gloomy disease got many names...
Eventually we gripped the full consequences of Katarina's new diagnosis. We had barely risen after the dramatics connected to her breathing problems and the tracheostomy and had Katarina admitted to her home and now it was time for new Serious Disease.
We were facing a two week treatment: daily ACTH-injections and frequent bloodtests. At best Katarina would respond to treatment - get rid of the seizures - and thus not having to face, or just face minor, effects on her psychomotoric progress. At worst she would develope a lifelong, complicated epilepsy which would significantly affect her progress negatively.
Katarina did not at all respond to the first two weeks of ACTH-treatment and had to continue treatment for another four weeks on an increased dosage. Her seizures became a bit less frequent but her EEG did not improve much and we were at the doorstep to "The Bad Scenario".
Treatment now continued with Valproat. EEG improved but Katarina was in a terrible state. Her tracheostomy caused massive mucus-build up and the medicine tasted like sh*t. She cried and coughed and not seldom threw up mucus, medicine and food when we had finally succeeded in getting food and meds down her throat. The ACTH had made her body swell up and our tiny baby, formerly very thin after her long illness, had, as you can see in the picture, turned into a soccerball. Valproat in the form of crushable pills became our saviour. We mixed crushed tablets and foods and the horrible meals improved radically.
But the seizure-situation changed again during autumn. Katarina had series of 50-80 seizures at the worst and no day was seizure-free. Her early intervention-programme was basically meaningless. I remember us sitting at the table, Katarina in her chair, me trying to make Katarina focus a toy and continue to focus while I slowly moved toy from side to side, up and down... Soon as we had caught her attention it went bang in her head and her body jerked forward in yet another strong seizure. It was as if every straining of her overloaded little brain trigged a seizure.
Finally Katarina was on a very high Valproat-dosage and was free of seizures. But it cost. She had closed the door to herself, she moved and reacted in slow motion and her vision was dim. She made no developmental progress what so ever.
Katarina developed a myochlonic epilepsy that went up and down. Valproat was her main medication but during a short period she was put on Acetazolamid to go with the Valproat.
At age five Katarina was taken very ill: pneumonia with both lungs affected and she was once again admitted to ICU. Suddenly her bloodtests were alarming, a state which may be caused by Valproat. Hypothesis was that the severe infection had made Katarina stop tolerating a drug she had used without problems for four years. The only way to save her life was to immediately take her off the Valproat.
It worked and her bloodtests improved - and to the astonishment of her neurologist there was no seizures. And her EEG was clean! There was no sign of any epileptic activity!
Katarina was seizure free more than a year and she came out of the fog. Progress came in big steps, she opened her eyes to the world and started smiling at it.
It has been explained to me that a very severe infection may affect the brain in such a way that seizures no longer start, or no longer spread. But considering that it takes a close-to-death-situation I do not recommend pneumonia as a method to get rid of a seizure-disorder...
Seizures came creeping back after a year but disturbances were not as prominent as before and the Lamotriginum that became Katarina's new medication did not affect her as much as the Valproat. Well, at times her sleep-pattern was a bit odd, with late and short nights, but we definitely preferred that to drooziness. Yet a year later she developed a new type of seizures and was put on Clonazepam to go with the Lamotriginum. But she still was not very affected and was free of seizures her last months.
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