The Dreaded “S” Word – Seizure

Ever since Georgia was diagnosed, (see my Background Info and Diagnosis page) I have known that there was a chance that she may have seizures.  After all, most of the people we have met through early intervention who have kids with Cerebral Palsy say their child suffers from seizures, or Epilepsy.  Some only once or twice, but most have them quite often, and are on medication to prevent or deal with them. Georgia had never had a seizure in her 5 and a half years, and we had thought we were one of the lucky families that never had to deal with it.  On Sunday morning, it was our turn.

Georgia (and consequently the whole family!) had been having sleep issues and finally after 5 months of sleepless or disturbed nights, we were getting some respite from them.  We had recently taken Georgia to a sleep clinic at RCH (RCH – Royal Children’s Hospital, Melbourne) and had started her on Phenergen to help her sleep through the night.  On Friday 20th August we had an appointment at the clinic to review her sleep diary and see if an EEG appointment (booked for Wed 25th to check for seizure activity) was necessary.  Between the doctor and I we decided that perhaps her sleep issues were behavioural, and that the EEG appointment should be postponed.

On Saturday night, we were on our 8th night of a full night sleep, so were feeling pretty confident that the disturbances were behind us, and that if she woke through the night that we were just to try control crying method or just see if she would go back to sleep on her own.

Around 4am on Sunday morning, Ken and I were woken by a noise coming from the baby monitor which is in Georgia’s room.  The noise wasn’t what we would normally hear from Georgia if she woke through the night, but it sounded a little like she was snoring, which she has done in the past.  She wasn’t crying or kicking the door like we usually heard, so we went back to sleep.  At around 5.20am, I woke again to the same sounds, and when I checked on her, found her on the floor on her back having a seizure.  Luckily Ken had followed me down to her room, so he grabbed the phone and we called the ambulance.  Imagine the guilt we felt knowing that she had been having a seizure for around an hour and a half and we lay in bed not knowing!  It’s amazing how you know immediately what is happening, even if you haven’t experienced it before.  The foaming mouth, twitching jaw and body,  glazed eyes and no response pretty much tells you what you are dealing with.

I have never felt so scared in my life, but adrenalin kicks in and it’s amazing – you can speak to the triple 000 officer quite lucidly and calmly!

Luckily the ambulance officers arrived in 7 or 8 minutes and Georgia and I were taken immediately to the emergency department of RCH. Ken stayed home to be up for Sienna and to take her to my mum’s for the day.  On the ride in to the hospital, I gave a background on Georgia’s diagnosis and CP and answered all the

normal questions about her health in the previous days, and if anyone else was sick at home. By the time we arrived at the hospital the medication that the ambulance officers had administered was working and Georgia was awake. 

Georgia’s temperature was climbing up steadily, so the nurses thought the convulsion might be febrile and related to a viral infection, but they started her on anti-seizure medication as a precaution. While we waited to see the emergency doctors we had blood tests (which came up clear), x-rays (also clear – except for some slight scoliosis), and a catheter inserted to check for urinary tract infection (again, clear). Unfortunately Georgia had another smaller 3-4min seizure and her temperature went up to 39 and because it was a Sunday, we could not book an EEG appointment until Monday morning.  So it was decided that she should be transferred to a ward in the Neuroscience Centre on the 8th floor for the day and to stay overnight.

When one of the nurses went to take her temperature and I removed her hearing aid, we noticed some dried blood in her ear.  The nurse thought perhaps that she may have a perforated ear drum, which would create a fever, and in turn may be why she had the seizure.  I was dubious though, because I thought that Georgia would have been in a lot of pain and I would have noticed her crying or if she had a fever during the day.  Then I remembered a few weeks previously I had been cleaning Georgia’s ear after changing her hearing aid, and accidentally scratched the edge of her ear, and, it being in an awkward spot it wouldn’t stop bleeding.    Unfortunately there was too much blood in front of the ear drum and they couldn’t actually see the eardrum, so it could only be checked by an ENT (Ear Nose and Throat) Specialist, and only after a week of putting drops in her ear to clear the blood.

On the Monday morning we had the EEG, and fortuitously Georgia was so sleepy from the seizure that she didn’t fight the 23 probes being put on her head (normally

Georgia is quite sensitive about anything near her head – she refuses to wear headbands, hairclips, hats..etc..!) and slept on my lap through the 40 minute test. We couldn’t get an appointment to see the ENT until next week, so plans were made to leave hospital Monday afternoon.

The developmental medicine team, which is headed by our Paediatrician, came to see Georgia on Monday after lunch.  Unfortunately, Georgia was so sleepy and didn’t seem to be recovering as well as they had hoped so it was suggested that we stay another day, and that perhaps the EEG results would be in then, which would tell us exactly whether the seizure was related to a fever or not. 

Each day, Georgia’s temperature stabilised, but she wasn’t eating or drinking and was extremely lethargic.  Most days the effort to sit up was too much for her and she spent the days sleeping.  The doctors told me that it was to be expected, a 5-10 minute seizure for a child is like running a marathon.  Georgia’s seizure went for at least an hour and a half, so it wasn’t surprising she could only stay awake for 5 minutes or so.   The air ambulance helipad was right outside Georgia’s window, so I thought that she might rouse enough to look at the helicopter coming in to land, but that – nor a visit from the clown doctors  – failed to raise even a smile.  She was obviously exhausted and it was going to take her a while to recover.

In the end we didn’t get the EEG results and didn’t go home until Thursday afternoon. The ENT specialists checked her ear on Thursday morning and discovered that her eardrum was perfectly ok, and that the blood in her ear was not infected, so that meant that the seizure was not related to an ear infection.  I found this information quite distressing – it was easier, in my mind, to know that ok she had a seizure; but if I made sure she didn’t get a high fever when she was sick, we would prevent another occurrence.

Unfortunately it wasn’t the case, and now we don’t know if she will have another one, or if it is the start of regular seizures.  The doctors tell us that because of Georgia’s neurological abnormality she is more likely than not to have seizures.  We are hoping that she never has another one, but time will tell.

Georgia is home now, and has started to eat and drink again.  She is still very lethargic and sleeps a lot of the day, but is getting stronger by the hour.  Today, she stood up at the tv for a little while and was also awake for around 4 hours, on and off.

This was our first in-patient stay at the hospital, and I am so glad we have the greatest hospital in Australia for our kids when they get sick.  We are very lucky in this country to have such knowledge and dedication available on our doorstep.

Anyway, I’m sorry this first post is so long-winded – hopefully I haven’t bored you too much!

Sue x

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3 responses

  1. Hi Sue,

    Sorry to hear of another family going through this. My nephew is in a similar situation. You might even know him, having spent a number of years a CPEC. His name is Zac. Thoughts go out to you and your family and to Georgia who looks like a beautiful little girl.

    Grant

    1. Hi Grant

      I only know of one Zac down there and he’s a bit older than Georgia so we have not been in the same group. But his mum Lisa is a photographer and takes a lot of the CPEC photos.

      Sue

  2. Hi Sue

    I was very interested to read this blog, how you find the time to write this amazes me. You are amazing.

    cindy x

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