Epilepsy South Africa
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Young Adult with epilepsy

Young Adult with epilepsy

Hi all. It helps me reading these posts to keep positive myself.

We live in Pretoria. My son Erick has epilepsy since 11 years of age. He is now 19. The past 8 years have been very difficult for him and hard on us as a family, being in a special school for persons with learning difficulty, going through puberty, being withdrawn from society due to MY fears of my son having a seizure and so on and so on. I think we as parents with epilepsy children have the most fears. Fear of losing your child, fear of inability to reaching their dreams, fear of rejection by others, the list goes on. he always got upset with me if I take him somewhere and before I leave explain to everyone what to do in the event of a seizure, he didn't want people to know, he was embarrassed about the seizures. So I explained to him that people need to be made aware of what to do, not just for him but also maybe for someone they might get to know in a similar situation. His brother have always been his guardian angel since the first seizure, yet he always fights with him, but still love each other.

Epilepsy has always been the "excuse" for my fears. I have made peace with the fact that he has epilepsy but very difficult to accept certain conditions (possible sudden death, brain dysfunction etc). His dream is to one day have his own car and drive it, having a family. He did not complete school and always stayed home feeling sorry for himself. He had mood swings, constant anger and behavioral issues. Partly due to his medication.

To place the cherry on the cake, we have recently been advised that he is having epilepsy seizures due to another condition he has had since birth, autism. If only I have known the symptoms for autism, I probably would have picked this up earlier, but I never knew. Can you believe it, it took 19 years to come to this realization. He started speaking only after 3 years of age, I was always told by doctors and clinics that it was due to his over-sized tonsils, had learning difficulty since pre-primary, seen many psychologists and therapists and no one has ever picked it up. His new psychologist has done the effort to going through all his previous doctors and school reports.

I have done lots of research and every time I learned something new I would discuss it with him. I came into contact with other parents with epilepsy young adults for guidance on how to better his situation. As we got news from other parents, I shared it with him and he started getting excited. But he was still "jailed" at home with epilepsy, not living his life, not interested in sport, just online PC gaming kept him busy and the PC gaming I can tell you was not good for him and his epilepsy either.

He was offered a work in February and have since he started only had 2 seizures. Luckily the people at work knows and understand his condition and are very helpful. His overall outlook on life has changed, now he is not 'disabled' anymore. The new psychologist has him on treatment now and it appears to be going better now.

Hope my story helps someone else to hang in there. Do your research, discuss it with your teenager / young adult, get into contact with others with similar difficulties, get them out there in the world, they need to live a life, so do we as parents. My children always say YOLO (You Only Live Once). Yes, we as parents will always worry, but don't we always worry about our children, with or without epilepsy.

Hope you have a super day.

Colet

6 Replies
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Good morning and thank you for sharing your story.

Your experiences (while terrifying for you) are very much the norm. Research has shown the close link between epilepsy and autism. However, many young people with disabilities grow into wonderful adults with a fulfilling life.

You might be interested in talking to one of Epilepsy South Africa's youth ambassadors. Justin Dekker completed matric in 2017 and is an international BMX racer (despite having epilepsy). Please let me know if you would like to make contact with Justin or any of the members of our Nicholas Project. This is our youth initiative named in honour of a 13-year old boy with epilepsy who died in January 2017. The members of the Nicholas Project are all young people with epilepsy.

You are welcome to contact our Gauteng Branch (011 811-1590) for assistance and support as the family is often neglected. We understand the challenges you face. Please also remember that Epilepsy South Africa has an electronic library containing extensive articles and information about a variety of aspects regarding epilepsy (including parenting a child/young person with epilepsy). You can email me directly on nationaldirector.no@epilepsy.org.za.

Wishing you and your family strength.

Regards

Marina Clarke

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Good day Marina

Maybe you can advise me when the members of the Nicholas project will get together then I can perhaps arrange to have my son there too, depending on where they meet of course, travelling to Johannesburg may bring some challenges to us.

Thank you for your kind reply and advice.

Best regards

Colet

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Hi Colet

The Nicholas Project is a virtual group who don't meet face to face, but telephonically as required. I suggest you contact the Chairperson Aimee Swart directly to involve your son in these activities. You can reach Aimee via email (aimeeswart9@gmail.com).

I also suggest that you contact Sandra Pohl at Epilepsy South Africa Gauteng to discuss the specific needs of your family. You can reach Sandra at assistantdirector.gp@epilepsy.org.za or (011) 811-1590.

Regards

Marina

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Thank you

Reply

Dear Colet

You, your son and family need to live with Hope and Positivity and a means to self management - the primary recipe to overcome these hurdles and lead to putting this condition behind him.

I have lived with epilepsy for the past 46 years - since age of 10. With positive mind, knowledge on how to manage the condition and determination, anything is possible and you can live a normal life.

It is hard for a parent to accept but that is and it is common for parents to over protect their children. Parents tend to forget that their child is going to grow up and needs to ultimately fend for themselves. He is a young adult and needs to start step out and face this condition, with your support and encouragement.

Computer Games stimulate the mind and may in fact make him more susceptible to seizures, as do many other things highlighted below.

Nobody is perfect and always believe things could be worse. Your Son needs to learn to take control of his condition and not the other way around.

I experienced lack of confidence and self-esteem in my teens and early twenties and by mid-twenties set about taking control of the situation, which resulted in me turning my entire life around.

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, by being positive (ignore all negative thoughts/energies) holding hope, altering our lifestyles to manage unnecessary stress and regulate what has been prescribed.

I realized 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 may 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 decided to go out there and 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. With every event, I went out for a personal achievement against the odds. I completed 31 Argus Cycling Tours a few Mountain Bike races, swimming events and went out knowing that I would not win, but my positive achievement was I put these challenges ahead of Epilepsy.

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.

Embarrassment and Humiliation: you need to rise above this - it is humiliating having seizures in front of people - some wet themselves, but turn the situation around and use the opportunity to educate those around you or those ignorant people. 1 in 100 people have epilepsy - there is sure to be another in the school or work place, who may be hiding behind their condition or who may have a different type i.e. nocturnal or absences - they may not even be aware they have seizures until it is drawn to their attention. You are unique and teach others, who are not in the know. Also, this condition can crop up at any time, at any age in one’s life - no matter who they are. Anybody can have a seizure - they cannot say it will never happen to them - we all have a stress threshold and with other contributing factors - bang.

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/drinks 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. There are other stimulants such as computer games, puzzles, flashing lights, flickering sunlight, etc. Use this diary to understand his condition - he is an individual and needs to accept what he has and then adjust his life to work with these. 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.

Regulate medication is important - get used to taking meds at regular times - place them in a place where he will see them or set a reminder. The medication maintains a certain level in our blood stream 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 min of 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.

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 or even less (now 18 months) but only due to my own stupidity (dropping my guard and not listening to myself).

Alcohol: There is often a recipe and I know I can enjoy a couple of glasses of wine or beer, I know my limits and if I overstep the mark and couple it with a late night, It is a perfect cocktail for me having a seizure the next day when I'm out cycling. So I don't drink these beverages the night beforehand. When I do drink wines then I will have a glass of water as well. It works for me, but I would not recommend alcohol to anyone on medication - its a personal thing and I believe most things in life can be done/enjoyed in moderation by knowing your limits (Threshold).

I also had a great desire to own a car and drive and I made a concerted effort to get my condition to a stage, where I understood and could identify my triggers and auras (warnings). I achieved this and got my first car when I was 26 - I purchased it myself, which further made me respect and enjoy what I had worked for.

Enjoy your son, 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 Education is out there and people are more accepting - you and your son must Accept the Situation and work with it.

Just to reiterate: I happened to watch Carte Blanche on Mnet last Sunday on how children and parents overcame Cancer by living with Hope and Positivity in their lives. I have lived with this since my mid twenties, when I made a concerted effort to change my life. I used my negative epilepsy energies in doing something positive and created a passion for change and to include others around me by setting up a support group.

I may have repeated myself above but it is one of my passions to helping others through personal experience and knowledge. Most of what I stated touches on my experiences but people learn and are encouraged by others experience.

All the best and feel free to call if you need more assistance.

Marina has provided you with useful information, Justin is a prime example of one of our Youth Ambassadors and there are many more like him.

Kind Regards Tim

082 925 0404

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Thank you so much Tim. This has really encouraged me and will discuss it tonight with my son. Just hope he understands everything as the autism does tend to have him understand certain things different from what is being said/explained.

I have now in the meanwhile also heard from his employer that he is not going to employ him permanently and he is finishing off on Friday, I have to explain that to him tonight and as I know Erick, he will take it personal and not as the situation. But your mail has really encouraged me to help him understand to take control of the epilepsy and not epilepsy controlling him. Surely it will help for this autism as well.

I appreciate your kind words.

Have a great day

Colet

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