Several people have offered me pot lately. But they’re not trying to sell it to me – as much as I may look like I need to relax. It’s for Lil Z, because medical marijuana has had great results controlling seizures in some kids. How times have changed…
We aren’t at the point where I think we need to consider medical marijuana… yet. We have a pretty strict drug routine here at home for Lil Z. Although she has been on one combination or another of anti-epileptics since she was 7 months old, we seem to have stepped up the pace and complexity of our meds routine lately. So, I thought I’d share with you the routine which takes place every morning and every night (with a few drugs also administered during the day).
The first step is gathering all the meds and paraphernalia on the kitchen counter. This includes the meds, pill cutters and crushers, a mortar and pestle, clean syringes and room temperature water.
I usually start with the seizure meds, since they are the most important. Lil Z is currently on four of them, although we’re weaning off one. You can’t just stop and start anti-epileptics, it will take us 6 weeks to gradually take her off the med we are phasing out. Right now (week 5), she’s only on 1ml of Trileptal, which means as of next week, she will be off it completely.
She is also on Keppra – which I suspect is one of the most effective of her anti-seizure medications. She gets 5ml of that twice daily – which is the maximum dose she’s allowed.
She has been on Epilim for what seems like forever. I’m always suspicious of it because of its bright pink colour, but her Neurologist assures me that it is one of the best drugs for Lil Z’s type of generalised seizures. She gets 9ml of Epilim.
I should also note here that preparing Lil Z’s seizure meds is made amazingly easier by the clever little tops that pop into the bottle and allow you to put the syringe in, turn the bottle upside down, draw out the amount needed, and then flip the bottle right side up again and put the cap on it. Some of the medications come with these nifty little tops, but some don’t. It took me ages to get my hands on some and it was a huge struggle before I had them (tilting the bottle and trying to draw the liquid out with a syringe is near impossible, pouring it out into a cup to draw it up wastes lots of the medication. There is no other good solution – trust me, I’ve tried everything). Why pharmacies don’t sell or hand out these little tops I’ll never know… Since they don’t, I hoard them in fear that one day Keppra will stop including the tops with their bottle of medication.
Our new anti-epileptic is Topiramate. Unfortunately, this one only comes in tablets or sprinkles, neither of which Lil Z can take because it she doesn’t take any food or liquid orally. There are apparently only two pharmacies in the whole of Brisbane who will compound Topiramate into a liquid – and neither is located anywhere near us. Plus, any compounded drugs are not covered by Medicare or our private insurance (if someone can explain to me WHY this is the case, I’d love to know as it seems like an utterly ridiculous cop-out to me). So, I compound it myself – following strict instructions from the hospital pharmacy. I crush two Topiramate tablets and dissolve them in 10ml of water and then give Lil Z 8ml of the resulting solution.
After the anti-epileptics comes the reflux medication, Omeprazole. We had the same compounding issue with that – although it was easier to find a chemist who could compound it for us since Omeprazole is quite commonly given to babies with reflux. But there was still the problem of compounded drugs not being covered. So, we cut, crush and dissolve this one, too. She gets half a tablet once a day.
She is also on Domperidone, which is intended to increase her gut motility – effectively pushing the food out of her stomach and into her intestines quicker. This helps because she vomits a lot, so it prevents her from bringing up too much of her feed. She gets a half tablet before every feed, but can’t have the Domperidone and Omeprazole at the same time. I cut, crush and dissolve this one, too.
Lil Z also takes a Vitamin D and Calcium supplement because these can be lowered by long-term use of anti-epileptics, which will weaken her bones. With her latest fracture, I suspect the doctors are going to consider other ways to strengthen her bones, but this is what we use for now. It is a tricky one because the pill is huge, so needs to be crushed with a mortar and pestle. It also doesn’t dissolve well, so I put it in a container and shake it vigorously and then suck it up into a syringe before the solution settles.
And finally, Lil Z gets 20-30ml of water before and after her meds. This keeps her hydrated and also helps to flush the drugs through her mickey tube.
All the syringes go in a handy take-away container, the pots and containers get washed up, ready to use next time.
Now all that is left is to give them to Lil Z and hope she doesn’t vomit them straight back up.
No need to go through that all again for another 12 hours…
Note: I’m not the only one who does her meds – our very capable au pair usually does them in the morning during the week. QB does sometimes too, although he claims he’s out of the loop with how to do the Topiramate. Personally, I think it’s just his way of being able to go to bed earlier than me!