Hello im a mum.to twins with asd and recently diagnosed with focal seizures and maybe more seizures depending on eeg results. Deep down we always knew my son may have had epilepsy but im finding it hard to take it and has had me in tears struggling to come to terms witha diagnosis. Does anyone have any advice
I’m sorry your son is going through this and your family I don’t think many people are using this site now, but not sure where they are.
Take care x
Welcome to The Hub. I am a parent of a young person (aged 23) with epilepsy who was first diagnosed at the age of 5. Firstly, you are not alone in struggling with an epilepsy diagnosis - I think all parents do. Secondly, as you probably already know, being able to admit that you are struggling and reaching out for help is a big step. Just out of interest, how old is your son?
My advice would be:
Find out as much as you can about epilepsy in general and specifically focal epilepsy - from trusted sources. Young Epilepsy have lots of information about this on their website and on The Channel. They have two downloadable parent guides (known as the infant guide and the parent guide) and they also have an online Guide for Schools, designed for all education settings from Early Years to secondary (and beyond) that may be helpful.
You can download the parent guides from this page on their website At diagnosis | Help and support for parents and carers | For parents and carers
This is the link to the Guide for Schools Guide for schools
Share your experiences with other parents - there are some parents signed up to The Hub but there are also some really good parent groups on Facebook and it might be that your son’s epilepsy healthcare team can put you in touch with other parents.
Talk to your family and your child’s healthcare professionals about your concerns - hopefully you will be assigned an Epilepsy Specialist Nurse and they should be able to support you and the whole family as well as your child.
Young Epilepsy carried out a research project in 2017 about the psychosocial impact of epilepsy on young children and their families (known as the SEEN study). This highlights the significant impact that epilepsy has on families, particularly Mums, and may be helpful for you if you are speaking to any healthcare professionals about your needs. https://www.youngepilepsy.org.uk/dmdocuments/SEEN%20Report_2017.pdf
Recognise that each day is going to be different and take each day as it comes. Some days are better than others and you have to go with the flow in terms of your feelings and emotions. We have had a real rollercoaster epilepsy journey with different diagnoses, seizures and lots of different medication regimes. We never stop worrying, but have learnt to get through the tough days and appreciate/celebrate the good ones.
Hello! I’m sorry that your son is going through this and for the distress it has caused you. I advise that your first step is to do as much research about seizures and epilepsy as possible. There are very helpful websites online such as: www.epilepsyresearch.org.uk that describe and define specific type of seizures and epilepsy which may be helpful with your research. Also, arrange an appointment with a Neurologist or Epilepsy Specialist Nurse and discuss everything that has been happening with your son so the Neurologist/Epilepsy Specialist Nurse has a clear description of what has been occurring and be able to give an accurate diagnosis. Then, they should start prescribing anti-seizure medication or other methods to try lower the amount of seizures and hopefully be able to eventually stop. If it is difficult to arrange an appointment or takes a long time, start looking for help around your area such as support groups and there are plenty of really helpful parent groups (e.g Facebook) with discussions between parents that have had similar struggles with finding an official diagnosis. It is very helpful to share your experiences with other people for both answers for your son’s health and for yourself as well. While you are concerned about your son’s seizures, it is also important to look after yourself and your mental health during all of this as well. It is a long journey to try discover the right help and answers towards everything, but with the right support, you and your son will get through it all and I hope he eventually becomes seizure free some day. I was diagnosed with epilepsy when I was 16 due leftover scar tissue in my brain from a benign brain tumour and am still trying to become seizure free, but with all the support I have received, it’s made everything a lot more bearable and I feel lucky to have my family and friends help me. It’s also important to celebrate the achievements made and not only focus on the bad days. Each step will be an improvement and even if it is a long journey, there will still be many happy steps and good news of progress.