This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!
Chris – I’m a Dad… but I’m also a husband to a wife who happens to have epilepsy.
So my last two entries for Faye covered Noah’s birth and our stay in hospital until he and came home. This one is going to be a bit of a look back at how I feel Faye and I have taken to becoming parents, as well as how Faye’s epilepsy has been since.
Having Noah home has been brilliant, and I love our little family and every new experience I’ve had thanks to him. But when it comes to Faye’s epilepsy it’s been hard. Faye has been on a drug reduction from Noah’s second week here, and as anybody who has ever dealt with someone who has epilepsy knows, any drug reduction brings its own issues. When we first came home Faye experienced a higher level of Complex Partial seizures, so for the first few days she was still taking Clobazam to counter act these. These complex partials mixed with a lack of sleep for Faye wasn’t great. And when you throw in that the Neurology team wanted to implement a drug reduction straight away to bring Faye’s high levels of Lamotrogine down it was pretty bad (High levels of Lamotrogine can be toxic for those who take too high an amount of it).
So Faye was on a drug decrease from the off, first getting her Lamotrigine levels back down to a reasonable level, and then getting the Keppra out of her system. This was done on a 2 weekly basis in drops, so that it wasn’t a huge shock to Faye’s system that the drugs were out of it. And it was all going smoothly until it came to dropping the Keppra. Each time Faye had to drop the Keppra she seemed to get more activity, and it dented her confidence each time this happened. Thankfully this activity only lasted a few days before things returned to normal, but considering Faye was dropping the Keppra every two weeks, it was a bit of a worry for us both.
The biggest piece of activity happened when Faye had her one and only Tonic-Clonic seizure since having Noah. It happened the night of my best friend’s wedding and was when I wasn’t with her. Faye had gone back to our room earlier than me so she could put Noah to bed. Faye had put Noah to bed and was getting herself ready when she had it. When I got to our room Faye told me what had happened, I felt incredibly guilty that I wasn’t with her to have been able to help. But Faye said that there was nothing I could do and I couldn’t be with her 24/7. What made it worse is that there was no phone signal at the venue for Faye to be able to get a hold of me, so she really was on her own.
The complex partials haven’t eased up, and Faye has woken up some mornings with marks where she’s had some form of seizure in her sleep. It’s hard for me but extremely hard for Faye. Anyone who knows Faye knows that when the Epilepsy isn’t bothering her she is a strong independent woman. With this heightened level of activity that she has been experiencing her confidence has taken a huge knock. For weeks Faye was scared that something would happen when she had Noah by herself, especially on or around train stations and stairs because of the huge Tonic-Clonic she had during pregnancy. But with some help from me and some of her friends, and some journeys completed, Faye’s confidence is slowly coming back.
Another issue that has arisen with Faye’s high levels of the drugs in her system are the many side effects that come with that. Some of the more common side effects of the Lamotrigine are:
The ones that have personally affected me the most are the bouts of Anxiety, confusion and irritability that Faye has suffered. I’m not going to go into personal detail with this but let’s say that there have been a few cases of “intense debating” that have happened due to them. Thankfully they all seem to be improving as Faye’s drug levels come down closer to the level they were at before she fell pregnant.
Life has been challenging over the last year, and the last four months have been crazy busy but every single second as a family has been a total joy. We take each day with the epilepsy as it comes as there are still bad days and we are learning how to be parents and how to deal with the epilepsy and the way it affects us as a family. However all that said we are heading in the right direction, Fayes meds are being played with and we are hopeful that we will find the balance again. We are both loving being parents and are very much looking forward to the future.
NEXT UP: Be sure to check out tomorrow's post at www.inmegansshoes.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.