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Regressions- not what you think.

Regressions but for us it’s not what you think!

I have had a lot of people lately telling me how by looking at Abigail you wouldn’t know anything was wrong. Don’t get me wrong I love hearing this because it means I am doing my job as a mum to make sure she is included in activities and can as much as possible enjoy a normal life. This statement though works both ways. I have had others say she looks fine so there cant be anything wrong with her, umm no its just that we have taught each other how to deal when things are bad and she has built up such a high pain tolerance and threshold to situations that sometimes it seems she is okay when really she isn’t.

Looks can be deceiving!

I want to take you all through the journey when times are tough especially when she is having a lot of seizures. So when Abigail has a seizure it is basically the neurons firing in a way they shouldn’t be, her brain gets kind of stuck for a while until it reaches baseline again. Multiple or continued seizures as you can imagine take a huge internal impact on the brain and can lead to what doctor’s call inflammation for lack of a better word. All these seizures can have lasting impacts known as regression. Now I am not talking your simple sleep regressions, trust me I have done those as well and they were a walk in the park!

Last November Abigail experienced over 120 clinical seizures with multiple status epilepticus episodes and clusters. During this period Abigail lost abilities/ regressed. She had to learn to toilet train all over again, how to use a spoon, she lost a degree of balance and also lost the ability to catch a ball which I am sure are not all of the skills she lost. All of these skills lost within a two-week period. Imagine going from being able to take yourself to the toilet to not even registering you must go and the following embarrassment at yourself when you lose bladder control. Now put those feelings into a 3 year old’s body coupled with not being able to fully comprehend what has happened and imagine how hard that must be. Each new skill Abigail learns I can guarantee you its not the first time and won’t be the last time she learns how to do it.

Time and time again I have watched Abigail regress with various “normal” tasks and have had to help re teach those skills. To watch your child’s frustration and her not understanding why she could do something one day and have zero control the next is heartbreaking I honestly barely have the words to describe it. So understand if you see her acting out or struggling this plays a huge part.

For us this is our ongoing reality, it takes alot of time, patience (not my strong suit) and love to raise a child with so much medically going on. When we are in the midst of a regression we devote majority of our time to therapy and working on gaining those skills back at home and unfortunately thats at the expense of our social lives.

Currently we are lucky that Abigail is only having a couple of seizures a week and is relatively well apart from slight ongoing complications of her feeding tube.

I guess what I am trying to say is be mindful of appearances both in person and on socials because what you see on the surface is not the whole picture and I can guarantee there is a whole lot more complexity going on.


The Medicalised Mumma x

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