Another tonic seizure – 28 September 2012
Lil Z had another seizure last night. They suddenly seem to be happening all in a cluster. They also suddenly seem to be happening when she’s asleep, whereas previously most of them happened when she was awake.
It was another tonic seizure, and again with the moans or grunts or muffled yells. I wish I could describe them better, because they really are upsetting. My vocabulary has defeated me, so I now often try to record video clips on my phone for the doctors. I’ve never shown them to anyone else though as I think the non-initiated would find it pretty disturbing. Or perhaps not disturbing enough.
It was about 9.30pm at night, so Vegemite was in bed and QB was out having a ‘quick beer’. One of my initial thoughts of horror was having to explain to the paramedics that we had to wait for my husband to get home from the pub before we rushed Lil Z to the hospital, but fortunately it didn’t come to that. I gave her Midazolam and she came out of the seizure within 5 minutes. All in all, the seizure lasted 10-15 awful minutes.
She fell asleep as soon as she stopped seizing, so I sat on the sofa and held her for awhile and then moved her to the cot and sat in her room reading and watching her until QB got home.
No idea what caused this one. Perhaps the same virus that may or may not have caused the previous two? Or she’s been constipated this week and I’ve read somewhere that can sometimes cause a seizure. Whatever the cause, I’m beginning to worry that the new medication, Trileptal, is working even less well than the old one, Tegretol. And she’s still on Epilim, which I dislike, but I suspect that is due mainly to the fact its a horrible artificial pink colour.
Paediatrician appointment – 27 September 2012
Although he’s been relatively good in the past, the paediatrician was excruciatingly behind schedule and we ended up waiting for over an hour. In fact, we ended up talking mostly to Dr Janet, one of his registrars, who did Lil Z’s initial exam and wrote up how she’s been doing. It was frustrating – particularly as it was a work day for me and ended up consuming most of my day – but at least it was a good confirmation that everything is more or less on the right track – bar the seizures.
The appointment yielded very little in the way of new information, to be honest.
- Lil Z is 88cm tall and 12kg in weight now. Her weight is right around 50th percentile and following the graph nicely. Her height has gone through the roof – she’s now completely off the graph she is so tall!
- After those measurements, I felt slightly foolish asking about her diet, but she has regularly been refusing meals. The doctor said not to worry as she was still gaining weight (and obviously growing like a weed). His best words of wisdom: “children are like camels” – so she’s obviously just storing up food during some meals so she can go without for a while.
- Her occasional leg tremors are a neurological thing, but aren’t related to her seizures and will probably go away in time. They have something to do with putting weight only on the ball of her foot.
- She is constipated – a problem that seems to have returned with the recent changes in medication. Fortunately, the doctor recommended a new medication that can be dissolved in her milk, which is much easier than trying to force 15-20ml of medicated syrup down her throat when she doesn’t want it!
- The CDKL5 test results will take “months” to come back. So, we wait.
Two tonic seizures – 25 and 26 September 2012
On the morning of 25 September, Lil Z had her chicken pox vaccination. The GP recommended giving her some Panadol to be sure she didn’t get a fever, but neither of us expected much of a reaction. In fact, Lil Z had a good afternoon, was happy in the evening, and went to bed and to sleep easily.
She had a seizure at around 9pm that night. We were alerted to the seizure because of her moans / cries. QB held her and after 5 minutes I administered the Midaz. It took her probably another 5 minutes to come out of the seizure.
She went to sleep soon after and slept soundly through the night. The next morning she was in a good mood and had her bottle and morning meds. When she started to get cranky at around 6.45am I thought she needed more sleep (she’d been awake since 5am) and put her down for a nap. Ten minutes after she went down, she started seizing again. I gave her Midaz and when she didn’t come out immediately, I called an ambulance.
The second seizure lasted around 14 minutes and was almost identical to the one the previous evening. She had come out of it by the time the ambulance arrived and after a sleep, then around 45 minutes of screaming, and then another sleep, she was back to normal and we were sent home.
The doctors said that it could have been the vaccination that triggered it. Or her throat looked a little red, so she may have a virus. No one knows for sure.
As her seizures continue, it seems like she is moving away from the absence seizures she had at first and is moving towards tonic seizures. She still doesn’t convulse, but she is increasingly jerky – going rigid and curling inward and then relaxing, then the rigid curling inward again. I hope this changes as this new type of seizure, while easier to identify, is very difficult to watch as it seems like she is in pain, rather than simply not being there with an absence seizure.
Audiology Appointment – 24 September 2012
Lil Z had yet another audiology appointment today. During her last audiology appointment she surprised everyone by passing her hearing test (which is a bit developmentally challenging) with flying colours. However, she’s failed the middle ear tympanogram test twice now and so she was scheduled for a third appointment to see if it was caused by a virus or if it is an ongoing problem.
It was apparent from early on that Lil Z had no intention of cooperating. Similarly, Vegemite, who was given orders to sit quietly in the corner, had a serious case of the wiggles. It made for an interesting appointment.
When we at last managed to conduct the test, they discovered that her right ear is now completely blocked. However, the audiologist said that this might be a lingering side effect of her ear infection, so we’ve been given another appointment in two months time. If she fails this next test, Lil Z will be referred to an ear, nose and throat specialist.
Neurology Appointment – 11 September 2012
Lil Z had an appointment with her Neurologist today. I was relieved that we had the appointment since Lil Z’s seizures have increased in frequency considerably over the past month, and also changed in nature, from absence to tonic seizures.
The main outcome of the appointment was a signficant change in Lil Z’s meds. She has been taken off Tegretol, which she has been on since November 2011 and instead put on Trileptal. I haven’t had time to read up on Trileptal much, but it is supposed to be quite similar to Tegretol, so there was no need to slowly reduce one while increasing the other – it was just a straight switch. The Neuro assured me that it has fewer side effects than Tegretol, too, so hopefully will have little effect on her – apart from preventing seizures, I hope!
Lil Z will remain on the Epilim. I don’t like the Epilim, probably because we had such a rocky start with it, due to some miscommunications and a prescription error. I worry that the Epilim makes her twitchy and that she hadn’t had tonic seizures until she began to take it. However, the Neuro said that it often takes a cocktail of medications to successfully suppress seizures in children, because they often begin in different areas in different ways. If the combination of Trileptal and Epilim don’t stop the seizures, she plans to introduce a third medication into the mix.
The day Lil Z began Trileptal, she was extremely sleepy and a bit out of it. However, since then she’s returned to normal. Now we just have to keep our fingers crossed that it works.
Tonic Seizure – 7 September 2012
Lil Z woke bright and happy today after a nice, long night’s sleep. She ate her breakfast and when we went to Vegemite’s gymnastics lesson, she was happy to sit on my lap or get cuddles from one of the other gymnastics mums who loves Lil Z (and strangely, Lil Z loves her, despite usually not liking people outside her immediate circle).
Lil Z fell asleep in the car on the way home and for once I was able to transfer her to her cot without any dramas, and she had a nice long nap.
When she woke, I’d decided to take the girls to a cafe for lunch (the selection in the fridge looking quite sparse) and then do some grocery shopping. However, I noticed that Lil Z was having myoclonic twitches. Every so often, one of her legs would kick out involuntarily. It startled her when it happened, but didn’t seem to upset her. Myoclonic jerks hasn’t necessarily been a sign in the past that Lil Z is going to have a seizure, but after the terror of dealing with a seizure in the car, I decided we’d stick close to home.
The girls ate their lunch and watched a Disney Princess DVD. Lil Z enjoyed rolling on the floor with her sister. She then started to get tetchy, so I decided to give her her afternoon bottle and put her down for a nap. She’d just finished her bottle and fallen asleep in my arms when the seizure started.
I still feel badly prepared when it comes to describing Lil Z’s seizures, but it was a tonic seizure, with her starting by curling up and going extremely rigid followed by lots of jerks. Her arms flew up in the air unexpectedly. Her legs twitched. Her eyes were fixed forward and wide open without blinking. I timed it for 5 minutes and then administered Midazolam, as per our seizure plan. The doctors have recently increased her dose of Midaz, so we now have to call an ambulance after we’ve given it to her, as a precaution against it interfering with her breathing.
Vegemite handled the whole thing extremely well. As soon as I said we were going to go to the hospital, she collected some pens and paper and her favourite Barbies in a bag to take with her. She also helped pat Lil Z’s back to soothe her, and opened the door for the paramedics when they arrived.
The seizure only lasted 10-15 minutes in total and the Midaz brought her out of it – and knocked her out completely. She didn’t wake up until well after we’d arrived at the hospital.
Fortunately, we were in the Emergency Department for a surprisingly short period of time. When Lil Z woke up, she was alert and well and all her vitals were fine. She was running a temperature and her blood sugar test came back a bit high – the former is fairly common post-seizure, and Nurse Paula (whom I love because she not only remembers Lil Z each time but calls her by her nickname) said sugar levels can be elevated post seizure, too. One of the doctors gave her a thorough examination and said her throat was a bit red, so they figure that it was another virus that triggered it.
Lil Z fell asleep in the car on the way home and only woke up long enough to be given her meds before sleeping through the night. These seizure dramas are, after all, quite exhausting!
Another EEG – 6 September 2012
Both an MRI and an EEG have been mentioned as being in the pipeline for Lil Z but we’ve heard nothing from the RCH about scheduling for either of them. Then on the morning of 5 September, the Neurosciences Department called, saying they wanted to do an extended EEG on Lil Z ahead of her next appointment with her neurologist (on 11 September), and so we needed to come into the hospital… tomorrow. Yes, forget about the fact you have a job and responsibilities, drop everything and conform to yet more hospital scheduling.
Lil Z HATES EEGs. She doesn’t like people fussing with her, doesn’t like people touching her head, and hates to be restrained. So, although it’s totally painless, sticking the little electrodes onto her head is a real drama. In the end, I was holding her while two technicians stuck the things to her head as fast as they could and Lil Z screamed like she was being tortured. Several passing nurses stuck their heads in the door to see what was going on – the calm, quiet Neurosciences Department doesn’t usually see such excitement.
Lil Z had had a terrible night the night before and been awake nearly all night. As a result, QB and I had had a pretty bad night too. So, it was fortunate that once the electrodes were attached and Lil Z had drunk a bottle of milk to calm her down, she fell fast asleep in my arms, and I was able to lie back in the recliner chair and doze as well. I shudder to think how the EEG video probably recorded me asleep with my mouth hanging open, but the rest was welcome.
The EEG ran for 4 hours and Lil Z slept for most of it. Removing the electrodes was much less eventful and then we were able to head home.