A timtam isn’t just a timtam.

Posted by Danica Quabba on

Alright guys, finally getting around to the update I promised 3 days ago!

The past 3 days have honestly given me whiplash. On Thursday morning the girls decided to be super sneaky and get into the fridge while mummy and daddy slept and ate half a packet of Tim tams. A lot of you will laugh over this or say I should have had a lock on the fridge, but hindsight is bittersweet. A Tim tam for a person on medical keto for epilepsy is literally the difference between having a seizure and not having a seizure. Abigail ate probably a minimum of 3, which for her is sugar overload and caused her to fall out of ketosis.

Her being in ketosis is the only thing standing between her and clusters of seizures/status epilepticus. On top of this Hazel decided to fall off the bed and split open the back of her head, not bad but enough that I had to tend to it.

The last three days has been full of seizures, mood swings (from not just Abi), crying (also not just Abi) and huge side effects from trying to get Abigail back to being ketotic. A snapshot is last night around 10pm Abigail woke up and projectile vomited throughout our bed after a tube feed even though she had been given drugs to help prevent this. She was shaking, pale and clammy and crying as you can imagine. I took her into the shower where another round ended up all over me. It took me an hour to clean her up and settle her to the point she could get back to sleep. In short, her ketones rose too quickly for her body to handle, to make matters worse this morning her ketones decided to dip low again which meant more seizures. I honestly this morning seeing how low her levels were again felt completely and utterly defeated. To watch how she has suffered these last 3 days just from a couple of Tim tams makes me question whether the diet is worth it or whether we can look at another means for treatment.

The seizures have meant more regressions and she is back to having wee accidents and has become pickier with her food yet again. I feel like some days her and Hazel are similar in age rather than the 2-year age gap and it breaks my heart.

Watching her suffer during days like these makes me question why diseases like this can absolutely ravage someone so little and innocent and really tests my faith.

Having Abi suffering so many absent seizures during this time I wanted to address a common misconception about this seizure type. I get a lot of people say to me when they see an absent seizure that it must not be that bad for Abigail because it looks like she is daydreaming. This is completely incorrect. Any seizure causes stress on the brain and the person emotionally. More than 3 absent seizures in an hour are still a cluster and still must be treated as such. Absent seizures are just as distressing as a tonic clonic seizure for the person, it is only in the perspective of the onlooker that this seizure may appear not as distressing as other types.

Finally, on a more positive note, next month is light up March for epilepsy and in particular March 26th is Epilepsy Awareness day. As a tribute to Abigail and all the people living with this disease, I ask a simple favour. On March 26th get creative and light up whatever you can purple and send me your photos to help raise awareness and shed some light on epilepsy as a community!

I will also be running another fundraiser with all proceeds going to Epilepsy Queensland Inc. with some amazing prizes and will be releasing more details soon! As well as this raffle I will also be featuring some other families who have been on similar journeys to our own to share their perspective and journey with you all to raise awareness!

The Medicalised Mumma x

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