My son had an absence seizure in November and a second seizure in February which was a left frontal focus seizure.
He had an EEG which showed active general epilepsy with left front focus and an MRI which was normal. We saw a consultant who advised us of SUDEP and a medication that he could try if we wanted but that the meds each have their own side effects. We were not advised either way regarding the medication and consequently we have decided to wait and see how it goes. The follow up letter mentioned that my son was at high risk of further seizures and this has created a lot of anxiety for me.
I am considering seeing a paediatric neurologist privately so I can perhaps get some deeper insight into my son's EEG and type of epilepsy as I feel lost and insecure about it. He has a lot of questions which I don't have answers for. Has anyone done this and received any further information?
If anyone has any advice, I would much appreciate it. Many thanks
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Reading your post, my immediate reaction is that your son is "doing well" at present, to have such a lengthy period between seizures. And judging by the "medical " care you've already experienced, quite an involved / proactive medical team
I'd disregard comments about SUDEP, I'd presume that the probability of death via the actions of a motorist tomorrow, or whatever are perhaps 100,000 times greater. I've had the same "threats" made in respect to myself. Worth recognizing that at some level, all professionals have their own interests at heart, even if it's at a subconscious level
Personally I'd collate and review data about your son's seizures yourself, given we all have the time to do so, utilise/take advantage of any services provided by the state and only "delegate" greater control to the states recommendations, on consideration and/or if seizures suddenly became far worse/more frequent.
In just coming up to 6yr's of seizures myself, can appreciate the critical time related issues a medical professional has to operate within. But unless such can devote considerable time to the issue, I've found them a useful source of info, but routinely, presenting generic actions as being the "norm" (Nb. In my experience, if I had a bruised knee, would be the norm for some NHS expert, who's never seen the bruised knee, spoken to or met the patient after 5yr's "involvement", to recommend amputation over the phone, as it solves all medical issues (Nb. Aside from the loss of a leg, adverse effects of medical treatment, outweighing benefits by perhaps 100 to 1)
Could you see if your sons neurologist would offer a 5 day video eeg as an inpatient? Then you would all be able to determine how often he has seizures? And if so, is it worth medicating? He could potentially 'grow out of them'. Hope this is of some help.
Hi, your post resonates with me very much. My 3 year old daughter has had seizures. She had a few then skipped a whole year without one. Both of her sleep & awake eeg came back as normal. I took the decision to sit & wait it out. Completely my decision. My daughter's neurologist also told me about Sudep, however, my GP who has been in a GP for 40 years told me he thought Sudep was related to one specific type of seizure, so who knows. Sorry this is no advice but wanted to make you aware that you are not alone. I live in hope that my little girl grows out of them.
Did they advise using Midazolam in case it comes up again? I have some for my son (never used) and we just renew them every six months. My son was also 8 at the time when he had his first seizure, now 9, and nothing has happened since, but it is good to have should a new seizure occur. Good luck!
Am not from a medical background, any "science" background being nothing but science studied whilst doing a BSc. But you have stated you wish to "wait and see" in respect to medications, perhaps with your sons seizures being so rare to date? I'd take that approach, avoiding/limiting high risk activities until a clear picture is determined, taking advantage of those services on offer, obviously approach altering if seizures became a critical issue.
Am not sure that those who've used medications for years/life, are perhaps 100% fully aware of the negatives............if one is accustomed to feeling like "this", it will be the "norm". But anti seizure medications aren't equivalent to taking a couple dozen paracetamol a day, for life. Perhaps more like having a few cups of pesticides a day for life
I cannot emphasise enough, the benefits I've had from my collating data in respect to my seizures, recording such data and reviewing it throughout. Being a pedantic........was able to recognise within months, that my seizures occurred at a precise, physiologically determined 40 day period. Over 61 months, large proportion not taking medications? Had 1 No. occasion when a seizure occurred as early as Day 32. Not an issue, as I'd avoided hi risk activities from Day 30. And 2 No. occasions when a seizure occurred as late as Day 40 and/or Day 41. Without exception, every seizure period I experienced initiated with Nocturnal Events around Day 34-36, any seizures whilst awake occurring within the 72 Hr period following this. As you may imagine, as a keen cyclist (150 miles a week typical), gym user etc, etc, the information has been of use.....
At my instigation have trialled medications / doses since June 2021, obviously collating data on their positive / negative effects in respect to myself, evaluating the dose, whether an increase is needed, or whatever.
I fully recognise that the NHS medical "experts" have a matter of minutes to determine the approach taken, "put him on drugs, a higher dose, another drug" being the accepted approach. Personally have found their approach pitiful and harmful. Took the "experts" nearly 5 yr's in my case, to accept the fact that I have not to date, ever had seizures daily. Had a sense after 5yr's that a leading consultant, was struggling with the concept that I'd been at "Day 36" - "what do you mean by Day 36m, consultant was clearly bewildered". Presuming the age of your son, I definitely wouldn't hesitate to use your "wait and see" approach, you'll both know more in relation to his seizures than Dr's in no time.
Thank you for taking the time to reply. What you've explained makes complete sense. In particular your reference to the medication being more like pesticides than paracetamol. I have recorded the dates, times and activities that my son was doing when he had both seizures to ascertain a pattern if they were to become more frequent. I would like to learn more specifics ideally to understand how it may or may not progress.
Yes, it is- my son had a very long seizure and needed it on the ambulance- he hasn't needed it since, so we just have it for back-up. It was also offered to my daughter but never needed- she's been on medication for 5 years now and as she has grown out of it (yay!) will be off them by her birthday in September :).
Hi, out of interest, did your daughter actually have any seizures. Not clear from your post ? Was she being given an exceptional harmful chemical, with physiological damage being committed, as a "precaution" ?
To be more clear: I have 2 children with epilepsy! One of them has been on medication for nightly seizures, the other one hasn't. But as she has grown out of it, this is of course no longer needed.
she was diagnosed with eses/csws- from Rolandic epilepsy, causing her speech to be severely altered, as well as her ability to understand language. Since she took medication language has been her best subject at school :).
p.s. we live in Holland, so I can not really comment on the NHS- there is a difference in the way treatment is determined here, and the time it takes to get an appointment as well, but in case of my son's medical emergency this was very timely!
And the NHS ? Get the feeling that it depends where you live; have described this elsewhere, but my treatment to date consists of some Dr who after nearly 6 yr's "treatment", hasn't spoken to me or met me
I wasn't offended at all- Dutch people are very direct so it is nigh on impossible. I have experience with two hospitals/institutes- one was extremely slow and the other isn't! also much easier to get in touch with them. The emergency medicine helps should he not get out of his seizure- but this only happened once. My daughter's medication is no longer useful and makes her very sleepy in the morning. Which is why we are very keen to get her off them. I hope you're able to switch doctors, as we have too!
Hi I was first diagnosed at aged 24 I'm am now 38 and is the first time in 2 years I've been seizure free I am even driving again I started with tonic clonic seizures, auras and absent seizures I was given zeppra these gave me severe depression and angry outbursts the only ones that have worked are eppillim and zonisamide
Please be careful listening to people who have had epilepsy for a short time. A short time, to me, is under 10 yrs.
I have has it for 31 although they say I was born with it.
My type is JME, Juvenile Myoclonic Epilepsy. My seizures vary as I have a few different types.
I have been put on a medication that literally changed me and caused a lot of problems in my life at 14 yrs old by a neurologist who did not pay attention to my records. It took me 2 years to bounce back, but I did. That doesn't mean everyone will.
PLEASE find a pediatric neurologist. At 18 one agreed to see me and that saved my life. Also, do not EVER take the, "well they're doing well as they haven't had a seizire in ___years."
I went almost 11 years seizure free on medication. I missed 3 doses (pharmacy was out) and they were on me and it was horrible.
When you find a pediatric neurologist, see if they know of a specialist in epilepsy. They will help clear up a ton of your questions. When I got pregnant I was so scared. I got to see one and he helped me through a lot of misinformation given by people and doctors.
Do not trust neurologists blindly. They are a special breed. Always ask for a ton of clarification. Good luck!
Thanks for your reply. I'd like to find a paediatric neurologist. They are seemingly hard to find. I had found one, who's secretary advised me he's not taking in any new patients. I'll keep looking.
Also, there is a big difference in the amount of knowledge they have- the first one my daughter got was very vague about the type of syndrome she had- it could either make her severely disabled in the speech department or not at all! Luckily we got a referral to another one who specialized in her type of epilepsy (and by then I had already concluded myself that it must be the less severe one, but this took a long time). My son's neurologist was also much better! And coincidentally knew a lot more on what was wrong with my daughter too- so we switched.
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so it is nigh on impossible. I have experience with two hospitals/institutes- one was extremely slow and the other isn't! also much easier to get in touch with them. The emergency medicine helps should he not get out of his seizure- but this only happened once. My daughter's medication is no longer useful and makes her very sleepy in the morning. Which is why we are very keen to get her off them. I hope you're able to switch doctors, as we have too! 
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