Well very tired now and my little one has already had 4 seizures in one hour praying she settles soon for the night. xx
Hi this is my first time writing a blog and just thought I would give it a go as I’m hoping im not the only person going through what me and my family have been going through for the last 16 months.
As a mum of three beautiful children two of which are now entering adulthood I thought my youngest stephy now 12 my life would somewhow start slowing down and with both my girls epilepsy starting to be controlled quite well I thought to myself mmm time for mum to do something for herself and with my passion for baking I decided to go back to school after being a stay at home mum my whole life.
My oldest daughter who is now 20 was first diagnosed with tonic clonic seizures at 2 years old they lasted until she was six, with severe developmental delays unable to speak crawl and walk and do all the things that you expect your child do do through the stages of their precious life. Somehow with all her treatments and extensive therapies one day her seizures just stopped and it was a miracle with her brother now 19 by her side she started reading, writing, laughing, speaking her first word at 6 and 1/2 i thought to myself we are going to be getting somewhere now.
She was siezure free for almost 10 years and re diagnosed at 16 and she thought her whole world came crashing down with the questions you expect why me now mum? with all the talks we had she finally started to see that her life was not over and maybe that was due to her youngest sister steph at aged 5 getting her diagnosis with her first absence seizure.
It wasent a hard decision to start medicatation right away and we went from 40 seizures a day to about 5 a week within about two months of medication starting and I was happy to see both my girls now thriving in their beautiful lives.
It was hard for bridgete to come to terms with her epilepsy as all her friends were now startng to go out and doing things that she wasent able to do due to her meds and she was on a very strict routine with sleep, school and work.
Then came the time when she asked to go for her licence and yes I was very worried and its always a worrying time but even more so as we knew her triggers for her seizures and one of them was sunlight but i had to come to the decision that I couldnt wrap her up in cotton wool forever so she went and got her learners permit and after two yers of practice and one year seizure free her doctor gave her the all clear for her licence and she was over the moon but i was a mess and so nervous but thats most mums and parents I think.
Everything seemed to be going very well then one day my kids school which was a pre to year 12 school decided to merge with two local schools and steph didnt settle well at all at the new primary school as she was just used to her routine and her friends she needed things to stay familiar. So after only one term things werent getting better with bullies and teasing and the school no help at all we made the decision to move her to a new school and hoped for the best.
We all enjoyed the easter break and got her all ready for her first day at her new school. She was excited and nervous just like me as but i seemed happy as I had multiple meetings with her new teacher and the principal about steph and her seizures and the plans that we had in place for her.
So my big girl walked into school new bag and we went to her new classroom and everyone was very welcoming and smiling and seemed very friendly so I felt a little bit at ease and walked my way out and prayed that she would have a good day and make one friend. The next few months seemed to be going well until one day she told me a kid started teasing her and she felt upset we had a talk about bullies and how we must stand up to them and to bring the courage up from your little toe and right up to your mouth and speak.
Things didnt seem to be easing and it got to the point where she now didn’t want to go to school so I went up and spoke to the teacher and principal and they told me they would handle it as they have a no bully policy so I felt at ease and I knew with her birthday and christmas coming I could keep her happy and occupied with our plans and that school would soon be finished and that the followiing year she would be going back to her old school and into year 7.
Then one day the school called me right before the holidays and told me that she was having a seizure and it felt like my heart just dropped out of my body. I jumped in my car and yes broke the speed zones and was at the school within five minutes bad i know but just couldnt believe that I got that call. When I pulled up out the front and saw two ambulances I just raced in and saw my little girl having a tonic clonic seizure I just froze and started crying.
The ride in the ambulance I was just numb it was so hard seeing her like that as it had been so many years since seeing this type of seizure but this one was so violent and dramatic. We were admitted and numerous tests we done and to my surpirise nothing came up on her eeg no epileptic activity so I was very surprised.
After a very long night we finally came home and was happy to see my steph sleeping and resting after four days I sent her back to school and she was now on meds to help with her tonic clonic seizures and I was praying that in a few months things would start to settle unfortunately for us it didnt and within the hour the school had called me to say she was having another seizure so it was the same dril back to the er more tests more stays in the hopsital and the doctors were baffled as to what was going on because now as soon as we got to the hospital her seizure stopped.
We thought it best to keep her home as it was only 2 weeks before christmas and her birthday and we prayed she would not have anymore seizures. So with that we enjoyed her birthday and christmas but her seizures were still very bad but now we had a plan at home with meds to stop her seizures.
The new year was here and we were hoping she would get back to school as she loves school and missed her friends but with no luck the school rang me right away ambulances were called and it was starting all over again. My poor little girl was now up to 60 seizures within 3 months was just frightening to see and we all felt hopeless as we just didnt know what to do and as a mum was just really upsetting and I just didnt know what to do or where to turn for help and you do try to explain to people whats going on but its hard for them to understand as we were just on call like doctors couldnt leave the house we felt like we lived at the hopsital for almost one year.
Then after another long stay in hopsital for monitoring with not one seizure for the doctors to see we went home but this time we decided to film her seizures because it got to the point where I felt like I was going crazy and no one believed me what was going on. Finally the next day sure enough same routine ambulance from school to being admitted I showed my doctor the film we took and he said thats anxiety a pseudoseizure and I said what and finally when he explained to me what was going on it all started to make sense and to be honest I was relieved simply because we finally had a diagnosis and now we could start with treatment and we felt now we could move on and do this together as a family as this was so hard for all of us.
I do thank my lucky starts though for my wonderful children and partner as they were simply amazing with all their support and courage as at times I fell apart and just simply didn’t know how to hold things together. As far as the school was concerned they were no help or support and they didnt stick to the plan that her doctors and therapists wrote up for her and yes I was getting frustrated and angry to the point where I pulled steph out of school and she started going one day a week just settling in with her new school who were just amazing and supported every need that was requested.
Today as I sit here and write this it has been a long 16 months since my steph had her first pseudoseizure and yes they are still constant but she is able to go to school and she has done 4 weeks straight which I couldnt be prouder of her for. Its still a battle and we are still trying to find the right techniques for her we are about to try massage and reiki to help her relax and breathe and I hope it works as I dont want to medicate her for anxiety as she is already on enough to control her real seizures.
I know we will get there and Ijust take one day at a time and hope for the best.