6 year old - potential epilepsy

[smcdonald]

Good afternoon.

We don't have any answers yet for our son, waiting to see Pediatrician at Gold Coast University Hospital on 27 October. So just wanting to know if anyone can shed any light / have been in a very similar situation to help me out with my anxiety while waiting for an answer.

On 3 September this year, out of absolutely no where, with no pre-warning signs, our 6 year old had a seizure upon what we think was waking (as it was 6:33am) when I discovered him. He then had a 2nd seizure on 21 September at 6:15am, this one was not as severe. The 3rd seizure occurred on 30 September at 3:30am approx and was more like the first one. The 4th seizure occured the next day on 1 October at 4:45am, this one was not as severe. The 5th one occured on 21 October at approx 8pm (15 mins after falling asleep) - short one. The 6th one occurred on 23 October at 7:30pm (approx 10 mins after falling asleep) and then again at 4.15am. The first 4 we had him taken to GCUH by Ambulance. The last three we have kept him at home as they were very brief (30 seconds approx). All have self resolved. He had a Brain MRI done on 4 September which came back fine. He has had ECG's, blood sugar, blood tests done etc in Hospital for the first 4 times, which were all fine. He had an EEG done at GCUH on 3 October and we are waiting to go through these results with a Pediatrician on 27 October. Has anyone been in this similar situation? I really hope he won't require medication and I hope he grows out of it ASAP? My guess is benign rollandic epilepsy? Every move he makes now in bed, Im super anxious. And every noise he makes. I don't know if he has always been a restless sleeper as I was not sleeping in his room until they started happening - but he seems to be very twitchy, jerky, makes sounds, restless, even at the best of times during the night (even when he's not having an episode). Is this normal?

 

[Porkette]

Hi smcdonald,

Welcome to CWE! I'm sorry to hear that your son is having seizures. It sounds like he may be having nocturnal seizures. These
seizures happen when a person goes to bed and when they wake up and sometimes there is jerking going on during the seizure.
The best thing for you to do is to get your son to an Epileptologist which is a Dr. that specializes in epilepsy. You can go to a
Epilepsy Center which are at big hospitals or university and this Dr. can do tests on your son and find the best med for him with
the least side effects.
Keep track of all of the seizures by writing down what time they happened and the type of seizure. Also take note if your son
is sick or if there's a low pressure in the weather because often these 2 things can affect the hormones in the body and when the
hormones are changing that can often trigger seizures for some people.
Cut your son back on the carbs and starch foods and you may want to speak to the Dr. about putting him on the ketogenic diet.
I was on it and it was great reducing my seizures but I lost to much weight while on the diet so I had to go off of it.
Try giving you son some vitamin B12 once a day that works good calming the nerves and make sure he gets plenty of sleep
and stays away from stress because these 2 thing can trigger seizures.
I've had epilepsy for 53 yrs. and experienced a lot of seizure meds. Tell the Dr. to do a DNA test on your son this will show
his body chemistry and the amount of enzymes in his liver when the Dr. sees this he can match that up to the best seizure
med with the least side effect or it will show if he's drug resistant. I found out I was drug resistant.
I wish you and your son only the best and May God Bless the Both of You,

Sue

 

[Sabbo]

Hello & welcome to CWE.
Seizures can be hard to capture on an EEG--believe me, I know. I have simple & complex partial seizures. When I was 14, I had 3 or 4 grand mal seizures--none since. It wasn't until an EEG I had after those seizures at the age of 14 that my doctor realized the "odd feelings" I complained about since I was 5 were simple partial seizures! Those seizures are more of a nuisance--I feel them come on & I'm aware of everything going on around me while they occur. I began having complex partials about 26 years ago. THOSE have been very troublesome for me, as they occur w/o any aura. Without witnesses, I may not even realize that I had one unless I'm injured or do some other odd thing when alone. I have burned myself severely--2nd & 3rd degree MANY times, & I've even changed my clothes during them. I record ALL my seizures in a notebook--the date, the start/end time, what type it was, and if it was a complex partial seizure, I ask witnesses what I did during it.
I have noted 2 things that affect my seizures are high stress/tension & major disruptions in my sleep timing. There are OFTEN times, though, that a complex partial occurs for no apparent reason.
I have used nearly EVERY AED out there. Tegretol was the first I was given, to which I had a HORRIBLE reaction--that was 1987. I now take 300mg Xcopri & 500mg Zonisamide daily. Xcopri is AED # 14 for me.