Ashling is mum to Allanah (4) and Cian (1). In the last year, Allanah has been diagnosed with epilepsy. Mummy Social team member Danni recently had a chat with her about what life is like being a mum to an epileptic child.
Hey Ashling! Thanks so much for sharing your story with us. Can you tell us about the lead up to Allanah’s diagnosis? What initially started this process? How long did it take to get confirmation of diagnosis?
We first started to notice Allanah doing strange jerking movements with her arms, we shrugged it off as nothing. All kids do strange things sometimes, but we noticed them more and more, sometimes up to 100 times a day. I used to find all her meals splattered up the wall, I used to think she was being naughty. After diagnosis, it was confirmed that this is part of the epilepsy and that the arm movement is involuntary, so she has no control over this.
We took her to the doctors who immediately referred her to the hospital to see a paediatrician. The paediatrician mentioned epilepsy and got Allanah an appointment at Cambridge hospital to have an EEG brain scan. We got the results the next day which confirmed a diagnosis. It took ten days from going to the doctors to getting a diagnosis.
What type of epilepsy does Allanah have and how is it treated? Can you briefly explain the symptoms etc?
Allanah has Myoclonic Epilepsy with absences. The child loses awareness of their surroundings – this is the ‘absence’. This is accompanied by severe rhythmical jerking of both upper limbs (possibly one arm more than the other). The jerks usually occur between 2 and 4 times a second. There can often be a stiffening of the upper arms resulting in the arms being raised upwards. Sometimes jerking of the muscles around the chin and mouth and eyes.
It is treated with a medication called Sodium Valporate.
Are there any side effects of the treatment? How do these affect her?
Yes, it affects her mood on a daily basis. Allanah suffers from some side effects of the treatment, she’s gained weight and has increased bowel movements. As she goes to the toilet so many times it makes her bottom sore and she’s then uncomfortable all day.
Is Allanah photosensitive? If so what precautions do you have to take?
Yes, Allanah is photosensitive. So we have to be careful with flashing lights and moving patterns. We try our best to keep her away from it as best we can. If she’s in the car at night she has to wear sunglasses due to driving past street lights as they can give a flickering effect.
The TV is fine as long as there’s no flashing and there’s usually warnings given prior to it commencing. We do always have to check ahead with soft play centres in case there are any flashing or flickering lights. This also means no flashing lights on the Christmas tree.
Does she still have seizures? How often do these occur? I appreciate it may be difficult to talk about but can you perhaps describe what these are like?
Allanah has some absences from time to time. As Allanah gets older she can suffer with what is called a “breakthrough seizure”. This is known as a Grandmal type of seizure which means she loses consciousness and can fall to the floor and for about a minute or so. As you can imagine this is a pretty scary thought for us both.
As a mother, you must live on your nerves a lot of the time? Are there warning signs you have to look out for? Have you received support in how to deal these should they arise?
There isn’t much support in terms of medical professionals but Allanah’s neurologist is always on hand to help. We see a neurologist every 6 months. Allanah’s Dad Luke, my mother-in-law Paula and our families helps me and we support each other.
I’m always on edge and making sure Allanah takes her medication, wears a helmet when playing outside. It’s really just a case of watching over her 24-7.
Allanah also has global development delay due to her epilepsy, can you talk us through what this means for her?
We try to allow Allanah to live as normal a life as possible. I do have to help her with everything though. Due to Allanah having seizures, it has had an effect on her development. She is behind on ALL of her milestones. Her abilities are more that of a 2-3-year-old rather than a 4-year-old. She goes to preschool and she loves playing and interacting with others.
The hardest part of her condition is the comparison between Allanah and her peers. We are always told not to compare children, but we are human and it’s hard not to some times. She is behind in her speech, so she cannot speak properly yet. She has trouble understanding a lot of what people say to her. This is what most people struggle with when trying to communicate with Allanah. She often presents frustrated behaviours due to not being able to express herself. Development regression is a possibility but I do not like to think about that. I want to remain positive and believe that Allanah will get there. This attitude keeps me motivated and helps me get through the bad days.
What does Allanah’s future hold? Are there things she will not be able to do, like driving etc? Will the treatment change/increase as she gets older?
Allanah future seems bright and hopefully will maintain good seizure control. If Allanah goes 7 years without a seizure she may be able to drive according to DVLA regulations. She will be restricted on what jobs she can do. Even if she doesn’t have a seizure for years. There’s always a risk.
Here at Mummy Social, we believe mum friends are a vital part of motherhood. Have you been supported by your friends during Allanah’s diagnosis and afterwards? What advice would you give to those who may have friends with a child that has recently been diagnosed with epilepsy, how can they offer support?
I wish I had lots of mummy friends to rely on. It is important but it’s mainly family that support us. If I’m honest, I find it hard to talk to other mums. I always have anxiety that they are judging me because Allanah can’t talk properly and she’s still in nappies. I really struggle with that aspect of things. There are times where I drop her off to school and all it takes is for a parent to not understand Allanah and that’s it I’m a blubbering mess once I’m back in the car.
Interview by Danni, Mummy Social Team
