After a series of "episodes" such as, withdrawing from the room to lie down because things were too bright, loud - saying strange things, sleepwalking and having one event of "seeing things smaller than they should be" - my 9 year old son was diagnosed with "complex partial seizures." after a variety of tests.
These included:
Blood Test - normal
ECG - normal
MRI - normal
Assessment by one of Cape Town's finest neurologists.
Based on his experiences, he was diagnosed with the above and put onto Tegretol CR. This was all very hard for us to accept and digest - especially since there is no clear "evidence" of his condition, yet his behavior was very indicative of something not being quite right.
He does not have fits - and those episodes I mentioned above only happened three times over the course of 4 weeks.
For now, we were told to monitor him on the medication.
I feel utterly powerless in this situation and I don't like the medication side effects - mostly making him depressive, and a little bit lethargic. He is different. On the plus side, he does sleep better - we were told his "partial seizures" happen mostly at night.
I was thinking of getting a second opinion, but just to get to this point already cost us a fortune and our savings are depleted for the year.
Has anyone else ever been in this situation or perhaps can offer some insight or thoughts regarding our situation - it would be much appreciated.
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TheK
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I have lived with epilepsy for the past 46 years. With positive mind, knowledge on how to manage the condition and determination, anything is possible and you can live a normal life.
My Neurologist is Dr James Butler and is exceptional - very well known and in high demand - this does not mean I discount others out there. There are many good neurologists - they are all up on latest technology and treatments and do confer with one another. I happen to know him from epilepsy circles, hear the feed back from others and his patients are not all local. Some travel long distances for surgery under his supervision. He used to be one of many guest speakers at my support group meetings.
It is hard for a parent to accept but that is life, nobody is perfect and this is how we are - things could be worse.
Your son needs to learn to take control of his condition and not the other way around - in fact needs to champion it.
I experienced lack of confidence and self esteem in my teens and early twenties. Medication is not always easy to balance initially as it needs to be in the bloodstream a while and it takes careful monitoring of his condition to reach good control and the correct medical management of his condition.
Most new generation medications of today target the type of condition.
There are a lot of options and advancements are on going. Not all of the side effects on the box will necessarily affect your son - we are all different with different metabolisms, lifestyle, size, blood pressures etc.
Most people with epilepsy underestimate themselves and tend to withdraw in case they may have a seizure. Epilepsy is primarily stress related and we can help ourselves in better managing our lifestyles to manage unnecessary stress.
I realised in my twenties that there is a possibility that subconscious stress may make me more susceptible to seizures. I had various imaginary barriers holding me back from doing what I wanted in the event I would have a seizure. This is where the focus of seizures tends to take control and creates subconscious stress. Breaking down these barriers pushed epilepsy aside and I then took control of my condition.
I then stepped out and decided to do what I wanted, within reason of course and, yes, I did have seizures, but I rose above them and got on with my life. I know its not easy but one needs to start somewhere. I did long distance swimming, cycling and all the things that made me happy and it lifted a load.
I also started a support group in my twenties as I established that it was easier talking to others with the condition and sharing - it need not cost anything. There are Facebook support groups as well. Don't hide the condition, speak to others about it. People are a lot more accepting and educated today than they were in my day 30 to 40 years ago.
Monitoring: It is important is to keep a diary and after each seizure, write details, when, where, what activities, what you ate or drank in the past 24 or even 48 hours. Some foods stimulate people like caffeine, alcohol, coke, coffee, or other fizzy drinks, sugar, chocolate, etc. This does not mean that he has to stop them, but maybe reduce quantity. Use this diary to understand his condition - he is an individual and needs to accept what he has. We all have different metabolisms, blood pressures, body size, lifestyles, etc. so we are unique and one person may have a different threshold to the next so knowing his limits and how he ticks will go a long way in better managing his condition. Regular medication is important - get used to taking it at regular times - place them in a place where you will see them or set a reminder. The medication maintains a certain level in our blood and if left too long, those levels may drop below a threshold, which may make him more susceptible in having a seizure i.e. the risk may be there.
Another important factor is to keep hydrated with water. Dehydration is a contributor. I drink a litre per day, we should really be drinking 1.8 litres per day. Cool drinks and coffee don't count.
Try to live as much of a normal life possible. As he grows and develops further, especially into teenage years, things may change - some grow out of it - others the frequency/susceptibility may increase or type of seizure may alter - no certainties.
I turned my whole life around and epilepsy has fallen away - I am a mountain biker, cyclist and basically lead an active lifestyle - I also have a very demanding job as a Senior engineer in Traffic Engineering. I may have one seizure per annum but only due to my own stupidity - not listening to myself.
Enjoy your child, have fun, do not over protect or treat him differently, help him feel as good as the rest - my parents treated me the same as my brothers and sister, for which I am grateful and I went to normal Govt schools. Epilepsy, Epilepsy Education is out there and people are more accepting - you and your son must Accept the Situation and work with it.
I may have repeated myself above but it is part of my passion in helping others.
All the best and feel free to call if you need more assistance.
Thank you for taking the time to give me this comprehensive reply - it's really appreciated and there are some great, super valuable tips to keep in mind.
At the moment, we can't "see it" - the episodes I referred to above weren't fits, shakes or physical trauma per se - he withdrew from the room and lied on the bed and asked us to speak softly and he just wanted to read and we must leave him alone - saying he "feels worried in his ears". And this lasted 2 minutes.
And the seeing things smaller than they appeared didn't scare him or anything, he treated it as a matter of fact and it only happened once, for about 4 minutes.
Because of these inconsistencies and time between occurrences, we can't really address his condition and help him face it just yet (from his perspective, face what exactly?) which leaves us pretty much in a reactionary supporting role for the time being. Frustratingly, and uncertainly so - but our hopes are up and we're very positive.
We were in exactly the same position of knowing that there was something wrong but not being sure of exactly what. To complicate our situation our 8 year old also has ADHD for which he is on meds. His seizures episodes also only happen at night and in the past he had really bad "night terrors" as a result he slept very badly at night and as a result he would fall asleep during the day at school. It also resulted in him forgetting all that he had learnt that day. We are seeing a child neurologist for the past year and a half and things have got a lot better. He has had MRI's and has regular EEG's to track the seizure activity. He is on Ritalin for the ADHD, Circadin to help him sleep and on a two year trial of Convulex for the seizures. Being on the meds has made a huge difference especially with his school work and sleeping. We are not sure what his long term treatment will be but are just glad that he is doing better and is a much happier child. We have decided to just take it one day at a time and stress less.
If may ask at which doctors/hospitals have you been in Cape Town ?
If would give you some help I would also go to Dr Butler where Tim was because I myself was also there this year and they are very nice doctors and always wants to help you no matter what.
He was referred to Dr Adri vd Walt at Panorama Medi Clinic.
I have had epilepsy now for 44 years, since the age of 16... I work closely co-editing Epinews with Tim above who has given most of the information I would give. Epinews is a bi-annual magazine Epilepsy South Africa does with personal stories of people with epilepsy. Perhaps request them to include you on the mailing list so you can receive a copy. I am always available also for advice, support and information should you need someone to talk to.
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