blog 85: Home telemetry

Crazy hair when finished!

I am very late to write this but it has taken me a while to be brave enough to share the photos and experience, but as I always said I’d be honest - I guessed it was time to share this too. In all honesty I was embarrassed, I was embarrassed by the photos, embarrassed by how I looked and embarrassed about having to have it done at all, I felt very vulnerable and exposed.Back in September 2018 I had a home Video Telemetry to try and get to the bottom of my seizures, as it happens by the time the test had been sorted I had been on Pregabalin for a while and some sort of seizure control for the six months prior. I always said Id be honest and whilst its taken me a bit of time I thought I’d put this together to help put anyones mind at ease who is due to have one and also pass on the hints and tips for preparing a toddler for their home becoming a glorified hospital!

Equipment

Before

I can’t tell you how nervous I was about the test, and we had some serious discussions about whether to have it at home or in hospital. Due to how much Noah hates being away from me I made the choice to have the test at home, myself and Chris were not always in agreement about it but he respected my choices. Chris was concerned that I wouldn’t relax and get what we needed from the test and he shared my concern that it would be traumatic for Noah. With the choice made and the date booked I set about preparing Noah. CBeebies was a lifesaver, Dr Ranjs show “ Get Well Soon” shows a character having an EEG, so I played that constantly even in the background whilst he was playing so Noah had seen the wires and the concept of the test. (series 2, episode 5 https://www.bbc.co.uk/iplayer/episode/b09204fx/get-well-soon-hospital-series-2-5-eeg )We also read together “My Mummy has Epilepsy” from Epilepsy Action, focusing on the test part (available to download in PDF https://www.epilepsy.org.uk/info/parents-explain-epilepsy). We arranged for Noah to be cared for at home as if I wasn't there at all. Chris swapped from an early shift to a late so he could be there in the morning and take Noah to Pre-School after lunch, it was just then for someone to collect Noah, give him dinner and ride it out until bed time.
One of the things that concerned me most was that it was only Noahs 3rd week of being at Pre School 5 afternoons a week, and I was worried about how he would react with all the change. His Pre-School were fantastic, I wrote his key worker about 4 sides of notes explaining everything he knows about my epilepsy, what the test involved, what we had told him and things he had been asking so that if he talked about it at school they would be able to be on the same page as us.
It also had its hard moments, Noah asking me why I was broken was tough and he often asked me why I was sick. I always answer “I’m not sick but epilepsy can make me poorly”, but as to why I’m broken I had no answer. We arranged for my Mum to stay and friends to pop in and out to help out as and when. I cooked meals the week before so they only needed reheating and sorted Noahs clothes for the week and PE kit etc.

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Baby Jakes turn with Dr Noah

We made the decision that I would go to the hospital alone, that my Mum would get to mine and Noah would go to school as normal. A few things we did to break Noah in gently:

1. I sent photos of the wires attached to my head from the hospital, Chris showed them to him and he thankfully he laughed,
2. I brought home wires for him to play with and experiment, poor Baby Jake by the end of it, but Dr. Noah was happy.
3. When Noah walked in from Pre-school we didn’t bombarded him with questions. Thankfully he was totally intrigued by it all.

We had decided that I would be set up in the living room, allowing me to be with Noah for as much of the day as possible. I had the added bonus that the wire moved further than I anticipated and as our downstairs is fairly open plan it gave me a lot of freedom.

A big tip is TAKE THE HELP! The Levines were huge helps, Luke doing my housework and running about with Noah when he got home from Pre School, Stuart did the school run every single day, I would have been lost without them. We also had people very generously cook dinners for us that we just had to pop in the oven and reheat. The hospital advised us to send pets to another home, but as there was already so much upheaval we kept Patch at home for Noah. I knew once Patch had seen the equipment he would leave it alone and I was right.

My headgear

We never hid anything from Noah and we were so so lucky that the man from the hospital was so fantastic with him when he came in to take the recordings, explained anything he wanted to know and even played with his Thomas toys with him. What I learnt is my 3 year old takes in far more than I realise!  
We did the full week and on the final day they removed the equipment, where I had a much needed shower and rushed to pick Noah up from pre school where I told him we could do anything he wanted… So we went to the park and took Patch for a walk.

Conditioner becomes your best friend

My top tips!  

• Prepare your child, books, tv shows and talk to them about it all.
• Get your hands on some wires for the child to play with, let them get use to the equipment, seems less scary.
• Take as much help as you can! Prepare child care as if you aren’t home.
• Wear a button up shirt, getting a t shirt over your head is hard work with the wires!
• Keep things as normal as possible in your childs routine.
• Conditioner conditioner conditioner once the test is over! It was the best shower of my life :) But it took at least four lots of conditioner to clear the glue out of my hair.

Conclusion:

I was so apprehensive about having the test at home but in all honesty it was the best thing, Noah was totally unphased by it all and loved talking to the staff from the hospital. Children are resilient and I 100% worried more than he did. In terms of childcare it was easier being at home and I would say to anyone with children that if you have the option to have the telemetry at home than do so. Unfortunately for me it didn't show anything we didn't already know, but for many others it could be the break through that they need.

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