In many ways, having a child with special needs is no different to having a typical child. Sam has as much attitude as his peers, has favourite toys and is getting better daily at letting us know *exactly* what he wants. The fact that the overall cause of his condition is undiagnosed doesn’t make a jot of difference. But the epilepsy…. oh, now THAT is a particularly nasty beasty. It is only one of the issues Sam deals with daily but it is probably the most distressing for him and us to have to face. Sam halfway through aggressive steroid treatment for the seizures. He was just 19 weeks old.

The seizures themselves are bad enough, but the medications used to try and suppress them are every bit as bad. In effect, we have to give our child medications to slow his brain, then the Professionals wonder why he struggles to learn/demonstrate what he knows.

Recently Sam’s seizures have been getting out of hand again - having been NG fed for the past 6 weeks he has gained considerable amounts of weight, which will inevitably knock his seizure control. Things get really complicated when you know that the NG tube made his reflux infinitely worse, leading to chest infections and several very scary moments.

Last week Sam finally went in for his PEG insertion, the PEG is now in and healing nicely. So, after weeks of frustration and keeping the neurologist informed, we’ve now got a plan to change his meds. And it is a scary one. Sam’s neurologist has very set ideas on how he wants to proceed - he rarely shares this information with the parents, however in 4 years he has rarely made a wrong call over Sam and his care.

So, when he recommended removing one of the meds Sam has been on for many years in favour of increasing the dose of one we really aren’t keen on…. let’s just say it’s quite a leap of faith. But I trust this man with my son’s life, literally, and he hasn’t let us down yet. Two nights ago, we started the changes…. one medication reduced, another kept the same, and the third increased.

The problem is, although the aim is to keep a balance, the medication that was reduced has been crucial in helping Sam for most of his life - however, as the neuro said, it has some very serious side effects which are non-reversible. If it had made Sam seizure-free he wouldn’t take him off it, however the pros no longer outweigh the cons. The reduction left Sam vacant and groggy, as the increase in the third medication isn’t yet enough to counter the reduction in the first. It takes a lot of gritted teeth to battle through on days like that.

Seeing my usually happy little boy completely polaxed, non-interactive and STILL fitting is a tough call.

But today, we may be starting to see light at the end of that particular tunnel - Sam has been happy, laughing, chatty and full of life again smile This is also not unusual with meds changes; my boy likes to throw everyone a curve ball and respond positively initially to changes, only to acclimatise to them within a few weeks. Again, this is not uncommon in children with his type of epilepsy but is incredibly difficult as a parent to deal with.

So, for now, we’ll happily take this (possibly brief) break in the storm and make the most of this precious time with our little man, while he’s lucid and at his best - because you never know, this time it might be the real thing x

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