Jeg ankommer igen til Børnemodtagelsen, hvor jeg bliver taget venligt imod. Jeg bliver henvist til en anden afdeling, som jeg forstår det, er det en afdeling, hvor de er specialiseret i epilepsi.
På afdelingen tager overlægen imod mig. Han er omsorgsfuld og fortæller omhyggeligt hvad der skal ske. Han fortæller, at han godt kan forstå hvis jeg er bange, da min søn jo er meget lille. Han følger mig ind på en stue, hvor en dame (kender ikke hendes stillingsbetegnelse) venter mig.
Damen vasker Arthurs hovede, mens jeg holder ham. Hun finder en badehættelignende hue med små plastikdutter i. I midten af hver dut, er der et hul, de ligner på en måde perler. Huen er alt for stor til Arthur og damen fortæller, at han er den yngste patient hun har haft. Hun henter en ny hue i depotet, men også denne hue er for stor. Med plastertape, får hun klistret huen fast om Arthurs hovede. I hver af de hvide dutter, fylder hun med en sprøjte, gele i. Derefter sætter hun en ledning i hver enkelt af dem. Jeg lægger forsigtigt Arthur i liften, han falder straks i søvn. Damen retter et videokamera til, så vi kan se Arthur på skærmen.
Få minutter efter, får Arthur et anfald, anfaldet begynder, idet damen rør ved Arthur. Kort efter får Arthur endnu et anfald. Begge anfald varer få sekunder og stopper idet jeg tager Arthur op for at trøste ham.
Det er ikke nødvendigt at optage mere, Arthur skal dog beholde huen på til næste undersøgelse, der foregår på en anden stue. På gangen møder jeg igen overlægen. Han har set optagelserne og forklarer lynhurtigt, at der ikke kunne ses forandringer i Arthurs hjerneaktivitet under anfald, hvilket der kan hos epileptikere. Han fortæller, at han har set tusindvis af forskellige former for epilepsi. "Jeg ved ikke hvad din søn fejler, men jeg kan garantere dig for, at han ikke har epilepsi". Som den første, har han lagt mærke til, at anfaldene begynder ved stimuli i form af lyd eller berøring.
En del roligere, sætter jeg mig med Arthur på den nye stue, hvor to damer venter os. Arthur er helt vågen og følger nysgerrigt med, mens han igen får ledninger klikket i huen og bliver tilkoblet et apparat EEG apparat. De slukker lyset og starter et stroboskoplys, men Arthur reagerer slet ikke. Hans EEG er igen helt normal.
Vi bliver sendt tilbage til Børnemodtagelsen for at vente på lægen fra i går.
Da lægen kommer, foreslår han, at Arthur får noget medicin. Han vejer Arthur til 4 kg og fortæller, at han skal have Clobazam (frisium) 2 ½ mg dagligt. Jeg har på ingen måde lyst til at give mit spædbarn medicin, men forstår, at det er nødvendigt.
Arthur skal ses til kontrol igen den 9. februar.
Arthur får medicin for første gang.
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Second visit to the hospital
I get a call early in the morning and are told, that I should go into the hospital right away, as they have a free timeslot for video- and EEG monitoring. Arthur has had 15 seizures since yesterday.
I arrive, again, to the reception area for children, where I am being met by nice staff. I am directed to another department, and as I understand, it is a department where there are epilepsy specialist.
In the department the chief resident receives me. He is caring and explains in detail what is about to happen. He says that he can understand if I’m a scared, since my son is still very small. He walks me into a room where a woman (don’t know exactly what she is meant to be doing) is waiting.
The woman washed Arthur’s head while I hold him. She finds a sort of bathing cap with small plastic dots in. In the middle of every dot there is a small hole which looks a bit like a pearl. The cap is far too big for Arthur and the woman tells me that he is the youngest patient she has ever had. She gets a new cap in the cupboard, but this one is also too big. With the help of sticky tape used for bandages she is able to make the cap stick to Arthur’s head. In every white plastic dot she adds a gel from a syringe. Then she adds a wire to every one of the little dots. I put Arthur down very carefully into the cot and he falls asleep immediately. The woman corrects the position of a video camera so we can watch Arthur on the screens.
Only a few minutes later, Arthur has another seizure, which is set off as the woman touches Arthur. Shortly after that, Arthur has another seizure. Both seizures lasts a few seconds and stops as I pick up Arthur to comfort him.
It is no longer necessary to record any more, but Arthur has to keep the cap on until the next examination which takes place in another room. In the hallway I meet the chief resident. He has seen the recordings and explains very briefly that there weren’t any changes to Arthur’s brain activity during the seizure, which is usually the case of patients with epilepsy. He says that he has seen thousands of different types of epilepsy. “I don’t know what is the matter with your son but I can guarentee you that he does not have epilepsy”. He is first one to notice that the seizures are set off by stimuli in the shape of sound or touch.
Feeling somewhat more calm, I sit down with Arthur in the new room, where two women are waiting for us. Arthur is wide awake and curiously watches everything as wires are attached to the cap again and connected to an EEG monitor. They turn off the light and start a stroboscope light, but Arthur doesn’t react at all. His EEG is completely normal.
We get sent back to the reception area for children to wait for the doctor from yesterday. When the doctor arrives he suggests that Arthur gets some medication. He weighs Arthur in at 4 kg and tells me, that he will be given Clobazam (frisium) 2.5 mg daily. I do not feel like giving my baby any sort of medication at all, but understands that it is necessary.
Arthur has a scheduled control again on February 9th.
Arthur receives his first bit of medication.
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