The tonic clonic seizure Isla suffered before her endoscopy was awful but it was now apparent that her seizures were the result of taking Mexiletine on an empty stomach.
There had been signs previously that with all the milk changes we’d been through that different milks affected absorption. When Isla was on a fully hydrolysed formula, her Mexiletine level was sky high, and when on a full fat milk formula, it was far lower than it should have been. The gastro team told us that this didn’t really make sense as the drug is processed in the liver. My lack of faith in their opinion only convinced me further. Her endoscopy showed no signs of stomach or intestinal issues… which was a good thing as it eliminated any problems from that point of view. There was evidence that she had mild acid reflux, but nothing worse than the average bear, and certainly not bad enough to cause a severe pain response.
We’d always known that Mexiletine should be given alongside milk or food to avoid or reduce the nausea side effects. Upon further investigation, it is the nausea and intense stomach cramps as side effects which mean that even adults can’t handle the drug and look for alternatives (Mexiletine isn’t just a heart drug). For Isla there is no alternative. I’ve recently read a research study by a company looking to patent a prodrug version of Mexiletine to take away the side effects. As Mexiletine is an anaesthetic, it causes nausea as it slows the stomach from emptying and creates intense stomach cramps. This now made Isla’s seizure response make sense.
Speaking to our friends on the LQT3 Facebook page who take Mexiletine, it became clear that not everyone has nausea from taking it, however, those who did, only had this side effect if they hadn’t had enough food before taking it. Initially we’d been giving Isla milk alongside her Mexiletine rather than letting the milk coat and line her stomach first. Linking it to personal experiences; a glass of milk before drinking alcohol… or even better a big greasy pizza, allows me to go from super lightweight to just lightweight. I can then manage 3 pints without a week long hangover! Similarly with Isla, giving her stomach a good milk lining seems to really reduce the amount of discomfort she suffers, and now she’s fully weaned; eating a piece of toast is a game changer. Never did I think I’d write the sentence, ‘eating a piece of toast is a game changer.’
Obviously this revelation isn’t fool proof, as even having the same dose in an increased strength landed Isla back in hospital and on morphine; but it’s allowed us to take back something that resembles a normal life, without fear of leaving the house. When she was in pain with the increased strength, her behaviour and symptoms were exactly the same as when she did have seizures; she just replaced the seizures with 3 days worth of screaming. It was still horrible to see but not half as scary. It may be a case of now she’s older, stronger and generally more developed she is just able to process the pain better and that is why the seizures have become cries. Who knows!?
In between posting the first part and third part we’ve had to give some more oramorph as she’d vomited half a dose of Mexiletine almost straight after giving it. This puts us between a rock and a hard place. We either assume she vomited all her Mexiletine and re-give the full dose; risking pain and possibly seizures or we don’t re-give it, assume she will have absorbed some, and risk cardiac arrest! Obviously seeing Isla in pain isn’t nice, but it’s preferable to her having a fatal arrhythmia.
Isla’s seizures have been an absolute nightmare to deal with. They’ve had us tag-teaming through the night staying awake. They’ve made us argue. They’ve made us cry. They’ve taken us to breaking point.
I know I shouldn’t, and I know it’s stupid to, but I blame myself for not coming to a solution earlier. We did everything in terms of charting what she had to eat and drink each day, what happened during and after her seizure, but we didn’t ever note how long before Mexiletine she had food. Once we’d been down the route of reducing Mexiletine and so eliminating it as a cause, I barked up every wrong tree available. I wasn’t wrong in terms of it being gastro and pain related but I am gutted I didn’t see the link earlier. It may have made no difference but when it comes to Isla, I live to serve and I feel like I’ve let her down. No parent wants to see their child in pain, and knowing I could have stopped or reduced that pain sooner is a bitter pill to swallow.
(On a lighter note: Not as bitter as Mexiletine, which is now reasonably palatable due to a good mix of Stevia! Thanks for the recommendation and advice Angela!)
The final part of the Seizures saga – I’m hoping there we’ll never have to revisit the issue again!
In terms of an impact of us as a family, it has been potentially worse than the heart issues! Seizures stopped us leaving the house for so long and made seeing people socially very difficult, so thank you all for sticking by us!