During my hiatus from the blogging world, we’ve been having a bit of a rejig of Samuel’s medicines. In fact we have commenced a wean off one medicine and weaning on a new medicine. This might not sound much, but it in actual fact it is quite a scary time.
Samuel’s staple medicines for a while have been Clobazam and Vigabatrin, with the Ketogenic diet alongside (which is counted as a medicine). Clobazam has always been a good medicine for Samuel. Strong and effective. But we are weaning off.
Well he’s been on it for quite a while now and the doctors have for a while been muttering that ideally we could look at coming off it in the not too distant future. But it was brought to a head when we realised that Clobazam and Samuel’s emergency medicine, Midazolam, were interfering with each other. These two medicines are like ‘sister’ drugs. They are from the same drug family. And they can affect each others effectiveness as they dull the same receptors in the brain. We know that if we’ve had to give Midazolam and it’s not far off medicine (ie Clobazam) time, then Clobazam wont be anywhere near as effective as usual. Plus, the combination of the two has more recently interfered with Samuel’s breathing and SATs (which has led us to have oxygen at home, which we hope will be a temporary measure).
Thankfully we’ve avoided too many incidences where we’ve had to give oxygen and this has been because we’ve been able to avoid giving Midazolam. Not because Samuel’s seizures are much better, but because we’ve been breaking the cycle of his seizure activity by giving an additional dose of Chloral Hydrate (this is Samuel’s sleepy drug he has at bedtime), which sedates him and most of the time stops things escalating which would usually see him needing Midazolam – plus it is thought that Chloral also contains anti epileptic properties which is another bonus.
So we, well Samuel, is coming off Clobazam and we have started to introduce Keppra. It’s a drug that we’ve not tried before and we aren’t sure at what dose we will have to get to that will be the dose he needs for it to help him.
And how is it all going?
Since we started the wean off Clobazam, things have been very, very rocky. We’ve not felt that we are in serious trouble, yet, but rocky enough to be concerned. The wean on of Keppra is very slow and it is nowhere near at any level to be of any help to Samuel yet.
So we are having to make ourselves be patient. And hold on for the bumpy ride ahead. We know it will get worse before it gets better and that is a bit daunting, but I don’t think it’s anything different from what we’ve faced before. But it doesn’t make it any easier.
Seeing your precious boy every day have a seizure where his body stiffens and twists and he cries, he screams, will never be easy for any of us. So getting the right drug concoction and the right dose is so important. It’s everything.
For those interested and ask about what Samuel is currently on medicine wise, here’s an update:
- Clobazam – twice a day (due to finish early October)
- Vigabatrin – twice a day
- Keppra – twice a day
- Lansoprazole – once a day (for reflux which Sam is expected to have but not sure if he actually does)
- Potassium Citrate – three times a day (to prevent kidney stones which can happen on the Ketogenic diet)
- Fruitis – once a day (vitamin supplement)
- Chloral Hydrate – once a day at bedtime, but additional dose in the day can be used
- Midazolam – whenever he meets his seizure emergency plan (generally it’s if he has a focal seizure where he stiffens, for longer than 10 minutes or when he clusters and has about 4/5 stiff focal seizures in 30 mins – worth noting that Samuel regularly displays other ‘seizure activity’ during the day but we have to be selective about what we treat as if we didn’t, Samuel would be sedated every day)
That’s quite a lot to put in to one small little boy’s body, don’t you think?
But at the top of his medicine list and his emergency treatment plan there is one important word. Cuddles. And he overdoses on those every single day.