Epilepsy

I have an itchy feeling that this page will be one that I may end up adding to over time but I hope not!

In all honesty, I did not think that Thomas would have any issues with seizures once he was put back on Levetiracetam (Keppra) but I was a bit wrong there. I even recall saying to people that Thomas was medicated for his seizures and it’s all under control and that it’s the least of our worries.

This page will be about the different forms of seizures that Thomas has developed since birth.

Also, the most informative website (so far) for learning about different forms of seizures would have to be http://www.epilepsy.com/

Neonatal Seizures

Thomas presented with seizures at 10 days old (born at 33 weeks, 6 days). These seizures presented as tonic seizures. I remember holding him and his head arched back, his whole body stiffened and his arms shot forward, straight and stiff. I had never heard him cry like that before and he sounded distressed. He did not respond or calm to my voice as he normally did. It was frightening to see him like that and not be able to do anything to stop it. His seizures were a direct result of a Grade III IVH (brain bleed). The doctors could only manage the seizures while the bleed resolved itself. Seeing Thomas like that has never left my memory. It was a horrible time.

Medications used to manage his seizures included:

Phenobarbitone

Midazolam

Levetiracetam (Keppra)

Pyridoxine (B6)

A host of antibiotics were used to rule out possible infections such as Cefotaxime, Amikacin, Flucloxacillin, and Aciclovir as well as Sodium Chloride as Thomas’ output stopped. It resolved in 4-5 days and the seizures stopped with the introduction of levetiracetam. He was weaned off all bar the levetiracetam after 1-2 weeks. When he was discharged weeks later, the levetiracetam ceased as well after being on it for a month with no seizures.

West Syndrome/Infantile Spasms

I have a separate page dedicated to this most recent rare form of seizures. This form of seizures itself, required two hospital stays, many EEG’s and a heavy treatment of steroids with the possibility of relapse anytime up until 5-6 years of age. We are fortunate that Thomas responded to the initial steroid treatment and so if he relapses, he will have another round of steroids. The treatment itself has many unwelcome side effects and Thomas is still not quite the same since. Having family to support us during the treatment got us through the rough first weeks. Once Thomas began the weaning stage, the side effects gradually eased off. We have had regular follow-up appointments with his Pediatric Neurologist which have been most informative. We have been told that his infantile spasms are likely the result of his brain injury.

Seizures

When Thomas was about 3 months old, he began having brief moments where he would become unresponsive and seemed to be staring into nothing. This progressed into a slight (almost unnoticeable at first) tremor in the chin, lips, and blinking of the eyes. You could hear a funny sound coming from his throat, like he might be aspirating or gurgling and a few times he also had tremors in the hands and legs. This happened when he was feeding, sitting in my lap or during a bath. There was no particular pattern of occurence. It lasted all of 15 seconds or less. We immediately rang the GP when we saw the tremors and went straight to the GP’s office. She saw the video I’d taken and was concerned and immediately wrote up a letter to fast track us through ED as well as contacting them. He had another seizure when in the waiting rooms for the doctors to see. That led to an overnight stay at Waitakere hospital so that Thomas could be monitored. Thomas had no seizures while there so we were discharged later the next day and told that if he had a few episodes a day to return and that he would then be put back on Levetiracetam. We returned the following week and did not require an overnight stay. Thomas had his dose of Levetiracetam doubled when he went to Starship as a precaution and Pyridoxine was thrown into the mix too. He has not appeared to have any seizures of this kind since.

Epilepsy Diagnosis

Thomas had a formal EEG in May this year and this quite firmly told us that he had the brain wave activity indicative of epileptiform charges which in turns means he has epilepsy. His epilepsy is likely due to the brain injury he sustained from his brain bleed.

What is an EEG?

If you want to learn more about this, please go to the link where it will tell you more about it.

http://www.epilepsy.com/learn/diagnosis/eeg

The process of having an EEG I have never found pleasant. Thomas has had many. The ideal is that the child is asleep during the process however Thomas has not always been able to sleep. It requires lots of glue and tape to apply the many electrodes. Thomas hates this part. He also does not enjoy having them removed. His hair is always a knotted mess of glue afterwards.

Important things to remember:

• You know your child best. You will know what behaviours are normal/abnormal for your child. Something will just seem off. Trust your instincts.
• Make sure to video as much evidence of seizure behaviour as possible. This has helped us hugely. It is too stressful and at times overwhelming to try to describe seizure behaviour to the many doctors and nurses you meet over and over again.
• If your child has a complicated medical history – keep all documentation together in a clear file to refer to. Doctors/nurses want to know medical history and current medications and dosage amounts. With a child like Thomas this is difficult to unpack so having his discharge summaries on hand makes the process smoother. Discharge summaries are great because they list current medicines, the dosages, and all diagnoses which are numbered. Thomas has several!