You can read Nikki's blog Slugs and Snails Tales where she shares her experiences on living with a child who has epilepsy.
Nikki Roberts returns for her second guest blog. Read about her son’s ambulatory EEG.
We believed Bam was having seizures again. I was fairly certain that I had been seeing a few vacant seizures when he gazes every day.
It's difficult to be 100% certain though because he also has attention deficit hyperactivity disorder (ADHD) so it could be that he was having small inattentive moments. There are also the moments when he was just clearly ignoring me! So I spoke about my concerns to our consultant who referred him for an electroencephalogram (EEG) - so we could find out what's going on in there.
Bam has had an EEG before but this one was different, this was an ambulatory EEG. Wires that are linked up to a small mobile computer are placed on the head for a set period of time, in Bam's case 24 hours.
Naturally I felt quite anxious about him having the test. His ADHD means he spends most of his life on his feet. How would he cope with being restricted by a machine? Would he be concerned about his appearance?
We decided to tell him about the test a few days before it was due to take place. It was long enough for him to process the information and ask questions but hopefully not long enough for him to worry about it. He was very sensible about it and asked a few questions. The deal sealer for him though was two whole days off school!
On the day of the test he was nervous but went off to hospital happily with my husband. A couple of hours later I receive a text message with a picture of him smiling with lots of wires coming out of his head. It all went well - he managed to sit long enough for them to get the wires on...this in itself is a big achievement.
Once he was home he was just amazing. He didn't complain once, in fact, he found it amusing pretending to be a robot when his brother arrived home from school.
Bedtime was fine…I think he actually went to sleep easier than most nights. We did sleep with him overnight, this was only because we wanted to make sure he was ok but it was by no means something he insisted upon.
When he woke up, got dressed and went off to the hospital to have it removed. He was just amazing and it makes me so, so proud.
The only problem we encountered throughout the whole test was the glue they used to stick the wires to his head. I understand it is important the glue is strong enough to keep the wires on but this stuff never comes off. Well, never is an exaggeration but it did take two weeks.
It hurt to take the wires off his head and then it hurt every time I tried to get the glue off. I have tried lots of solutions to get the glue off and the only one that really worked for us was acetone.
You'll be pleased to hear he is now glue free and has the cleanest hair in the area. We are now eagerly awaiting the results. Hopefully we won't be waiting too much longer...
Guest blogger Nikki speaks about her son’s epilepsy and his new found responsibility for his own health.
Respecting his wishes...
I’ve reached a point in my parenting life when I have found my son, aged 8 years old, suddenly has an opinion. Not just an opinion on whether we go to the park or not but an opinion on managing his own health.
Up until very recently he’s been too young to make decisions about his own health and care but since starting junior school he’s become partly responsible for his own care. I no longer have full control...That’s tough, really tough, I think I know what’s best for him but all of a sudden he has a view and that’s something I absolutely want to support in the best way I can.
When Bam, who experiences focal, absence and drop seizures, started junior school he was very clear "I don’t want people to know I have epilepsy".
I guess he doesn’t want to be different. He’s in a new school and he wants to be 'normal'. I understand that, I really do, but from my perspective I want everyone to know. I want the people around him to be aware, be able to notice the signs and of course help him when/if he has a seizure. Ultimately I want him to be safe...
I thought long and hard about how to tackle it. Do I persuade him to tell his friends and be open about it or do I fully support his choice and make it work?
Of course I want him to manage his own care, I want him to be independent but I also need to know, that as he goes about his daily life at school, that he is safe. It’s a tricky one, how do I balance his happiness and his safety?
I have spoken to the school and they have been very supportive and are very keen to respect his wishes. We have worked together to make sure Bam is able to tell them about his seizures in a confidential way.
Of course this is reflected throughout his life, it’s not just school…parties, its parties or going to a friends for tea. He can’t just go, it’s never a simple ‘yes’ that’s fine.
Parents need to know about Bam’s epilepsy and his seizures because he is in their care. Each time I let the parents know but I leave it up to him if he tells his friends. Most of the time I know he doesn’t.
I wonder if he’ll change his mind at some point? Will he understand that in general people just want to help him? Why is he so afraid of telling people? How do we make it more accepted? All difficult questions that I can’t answer.
In the meantime, we’ll keep supporting him and guiding him. I know he’ll find his way...
Change of Heart
Recently Bam made a big decision…he decided to tell his class about his epilepsy. Previously he was adamant that he didn’t want his friends to know, he didn’t want people to think he was different.
So why the change of heart?
I think it was down to our attendance at the Young Epilepsy Champions Awards in London earlier in the year. It was here that he realised that he wasn’t the only one with epilepsy, everyone at the awards had epilepsy just like him and they were celebrating their achievements.
He was so inspired he decided to organise an assembly at school to tell everybody about his condition and how it affects people.
So off he went to school, armed with statistics and information on the different seizures. He spoke to his Teaching Assistant who in turn spoke to the Head Teacher. They welcomed the idea and booked him in for his assembly!
He was so excited! He spent lots of time thinking and planning the PowerPoint presentation that he was going to build ready for his talk.
When the day came for him to run his assembly, he went into school, cool and calm. I could see that he was very self-assured; I knew this was the right thing for him to do.
He proudly spoke to the class and then answered any questions at the end. When one child asked ‘Does epilepsy stop you from doing things?’ His reply was ‘No, I’m no different to anybody else!’
Wow, Bam, I’m oozing with pride – you never cease to amaze me young man! Well done for sharing your experiences and raising awareness of epilepsy among young people.
Since the assembly
His classmates treat him exactly the same as they did before, nothing’s changed but if he (or another child) does have a seizure at school then they will understand how to help. (Which makes me feel much happier!)