Epilepsy and parenting

Update

I’ve taken a break from writing in order to sit back, listen and learn. I’ve realised that everybody’s experience of Epilepsy is different. Symptoms, seizures, triggers differ greatly. I’ve been considering whether I should be writing at all, as it’s so personal. Epilepsy awareness is needed. I encounter many people that have been misinformed or have incorrect information on the condition. I also remember the complete fear I felt when W was diagnosed and could only find horror stories online. W is doing really well, I want to communicate that, as well as spreading awareness.

Growth spurt and starting pre school

W has had a growth spurt in both mind and body. He is now a ‘threeanger’. He knows what he likes and dislikes and is happy to communicate it. His feet are huge! Just over 3 and a half and already putting my tiny feet to shame.

He’s doing brilliantly at pre school. I love how sociable he is and his ‘I can do it’ attitude. We are looking into primary school places soon. W’s tonic clonic seizures are currently controlled, but we are still feeling anxious about his absence seizures. I want to make sure that the school, he hopefully goes to, are aware of what they are and how to spot them. Currently he seems to get confused and very clumsy if he is ill or tired. We are currently trying to identify if they are absences or not.

Kixx football

W has started football training with htto://kixx.org.uk/. He absolutely loves it! The coaches are awesome. I mentioned his Epilepsy to them and they were brilliant. Our coach is really engaging. He knows how to control a group of toddlers in a positive way whilst helping them to navigate some rather impressive football skills. W was fully engaged for 40 mins, as the activities are delivered in managable chunks with clear and structured directions. Stickers, high fives and 40 minutes of pure fun.

The Kixx programme offhers a high energy, fun, creative and age-appropriate introduction to physical activity through football. It is also a great opportunity for your children to make friends. Our programme has been carefully designed for both boys and girls, ages 18 months to 10 years of age. The Kixx innovative curriculum emphasises both the physical and social development of our children.

https://kixx.org.uk/

W is up and ready to go to football every Sunday no matter the weather (or time for that matter). He is still little so we as parents also take an active role during training sessions. No sitting on the side lines – so wear your trainers if you sign your little one up.

Independent swimming

I have to admit this one caused a sleepless night. What if he has a seizure in the swimming pool? I’m still worried about it to be honest. I do however believe that knowledge of water safety is essential for children. I want W to respect water and to enjoy it. Once again our local swimming pool has been amazing.

All our Swim School sessions form part of the National Plan for Teaching Swimming (NPTS) and all our teachers are certified with Swim England.

Babies and children from 3 months up to 4 years can join Ducklings classes in our Learner Pool, with you as support and an experienced teacher. Your swimmer can then move on to our Stages from 1 to 7 and then there are there are many options.

https://www.south-norfolk.gov.uk/visitors/childrens-activities/swim-school

W has always been swimming but it has always been in lessons when he’s been accompanied by myself or my husband. He is now at the stage where he’s going in on his own. It hasn’t been a year since W has had a seizure, so parents are asked to be a spotter on the side of the swimming pool. There is always a lifeguard on the side of the pool (who was informed about W) and the swimming teacher is in the water with them until they progress to the ‘big pool’.

I was so proud of him. He went straight in. No fuss – no fear. ‘I can do it’ and he did. I had to be really careful not to be mega embarrassing on his exit out of the pool (I really wanted to bundle him up in his towel, cry and release my relief and excitement at how brilliant he was). We high fived and celebrated with biscuits instead. I’m often reminded ‘I’m a big boy now Mummy’.

He takes everything in his stride. Proud of you W.

Love,

Clare x

Diagnosis and medication, Epilepsy and parenting

Buccolam (Emergency medication).

For a while I’ve been anxious about going anywhere ‘too far off the beaten track’. I plan our outings meticulously if they are somewhere we haven’t been before. I even started googling Ambulance response times. The problem with doing this is that it made me panic even more. I realised even if W was having a prolonged seizure he would be a category two. This would mean that if anyone in the area was a category one he wouldn’t be priority. Every single Tonic Clonic W has had has been over five minutes. If paramedics didn’t arrive quickly, we would be watching him go through the motions of a TC and would be unable to stop it. We couldn’t prevent status epilepticus.

Status epilepticus is a condition where a person has a seizure (convulsion or fit) or a series of seizures that last for 30 minutes or more, without a complete recovery of consciousness.

https://www.gosh.nhs.uk/medical-information/medicines-information/buccal-oromucosal-midazolam

It was like going into battle without reinforcements or armour for that matter.

A friend @epilepsy_parent listened to my concerns and highlighted that Buccolam (Emergency medication) should be something we should be asking the Neurologist for. I did have to push. I called a lot. I asked for the criteria and then finally I got the call…

They were issuing Buccolam to us and wanted to begin the administration training asap.

I can’t not explain the overwhelming relief I felt. I cried. I danced. I sang to the Lion King in the kitchen.

The training was 45 minutes long and Buccolam is easy to administer. On its first usage a paramedic or health professional must be present as it can affect breathing and may turn into a CPR situation. After the first usage you are free to administer yourself (once trained). You are given four doses and these are tailored to the age and size of each child/adult. They stop the need for paramedics to use diazepam, which is a lot more traumatic for the patient. The 4 doses enable us to have one at home, one at nursery, one in W’s bag (which we take everywhere) and one spare just incase.

We went on our first holiday (since W’s diagnosis) this week. It was the very first time I felt ok about taking him far from home. We could help him if needed. We finally had the troops and armour with us wherever we went.

Buccolam has empowered us. I feel enabled to make sure that Epilepsy will not beat W. We are waiting and prepared to conquer that monster, when and if it rears its ugly head.

Love,

Clare x

Diagnosis and medication, Epilepsy and parenting

No words

I’m a planner. I write lists. I check them twice (or more). I prepare for most situations way before they happen. Epilepsy doesn’t suit this. Epilepsy sneaks up; it’s unexpected and with W seems to be for absolutely no reason.

I haven’t written a blog for a while, as I frankly don’t know what to write. I have no answers. I don’t know what’s going to happen or what the next steps will be. All of his tests have shown nothing so far which is great. I felt like a weight had lifted and his seizures seemed under control with medication.

Then the absences began.

We had a week of random absences and I concluded he was tired and things would settle after he had rested. We returned to Neurology last Wednesday and they confirmed the absences and upped his medication. Again I thought…it’s ok it’ll all be controlled soon. The increase in medication seemed to trigger ‘Night terrors’ which again left us all exhausted. He then suffered another longer absence this Friday – I was at work.

I told people at work I was tired (which wasn’t a lie) but I just couldn’t verbalise it all again. It’s hard for people to understand. You don’t want to always be the ‘party pooper’ and I didn’t know what to say.

I just couldn’t speak.

We are having to live with the fact that things are completely out of our control.

‘Is he going to have another seizure?’ I don’t know

‘Is he going to grow out of it?’ I don’t know

‘Will the medication control them’ I don’t know

‘Will it affect him when he goes to school?’ I don’t know

‘What type of Epilepsy does he have?’ I don’t know

I know this is the reality of Epilepsy for many. Sometimes there is no reason. We’ve got to live with the unknown and get on with it. I’m determined that it won’t define him. I’m determined that he will be a care free toddler and won’t lose his infectious smile. I’m determined that we will keep fighting on and together will raise awareness of Epilepsy.

Lots of love,

Clare x

Emotional support, Epilepsy and parenting

Living life on high alert.

The phone rings. I receive a text. Someone calls my name from the other room. There’s a strange noise. These are all moments that currently have my heart leaping out of my chest. The worry isn’t just your ordinary everyday worry. It is a deep all-consuming worry that sticks in your throat and makes your chest feel heavy.

Each time W has had a seizure it has been a shock. They are completely random and we still can’t detect noticeable triggers. I’m on high alert 24/7.

Sleep. I don’t think we’ve had a settled night since October when the Tonic-clonic seizures began. We bought a cheap video baby monitor in a hope to alleviate some anxiety. The problem is…every single sound makes us jump out of our skin. The panic that we might miss a seizure and he is laying on his back, without help, often invades my dreams.

Quite understandably, I also don’t want to be more than 15 minutes from W at any given time. Fortunately, I work 5 minutes from his nursery and approximately 10 minutes from my home. Each place we visit I also check for phone signal/ or if there is close surrounding help if something did happen. It’s sometimes a hard decision between making sure that W is ‘living life like a toddler’ and making sure that he’s safe. Large soft play area’s for instance; I’m sure W would find exciting, but the idea of not being able to see him for periods or time or him having a seizure high up fills me with dread.  

Medication worries us. What if we forget? What if he hasn’t eaten enough food before it and it plays up his belly again? We have set alarms on both phones and regularly check each other. We make sure we are almost over stocked in the house. The repeat prescriptions can’t be forgotten and we also pray that he keeps the dosage down, so we don’t have to decide if it needs to be given again or not.

We are finding the most difficult thing after the Epilepsy diagnosis is there is no certainty. No one can tell us why. No one can tell us when. No one can tell us if it can be controlled. No one can give us any assurance. Everything is completely out of our control.

Deep breathes, count to ten and plough on. We got you baby. We’ll beat this thing and together we’ll stay strong.

Lots of love,

Clare