I honestly cannot thank Emma and Janet enough for setting up this community meet-up in Manchester. It helped me in ways I didn’t even fully understand at the time. Speaking to other families and sharing stories felt like something I really needed to do.
If my family had a relationship status, ours would probably be: “It’s complicated.”
And although I don’t think my social skills were exactly on point, I definitely made an impression. I got a bit overwhelmed at times and went full overshare mode, dumping information on people before my brain had a chance to filter any of it.
I was honestly a little nervous going in. I worried I’d end up in confrontation because of how I am — I have a big personality and strong opinions about a lot of things. Thankfully, none of that happened. Everyone was lovely.
What I didn’t expect was that after speaking to a few families, certain patterns started emerging — particularly around behaviour and gastrointestinal problems.
I never expected to meet another family whose child had the same issues as my son, especially since he is second generation and, if the NHS is to be believed, should supposedly have no effects whatsoever from valproate exposure.
At this point though, I think many of us feel something is being missed. Eventually the science will catch up, and hopefully one day families like ours will have proper understanding, recognition, and appropriate healthcare.
One thing that became very clear to me after speaking to other families is that I strongly suspect there may be some kind of underlying metabolic issue involved in at least some cases. Specifically, I wonder whether there is something affecting the body’s ammonia regulation and processing.
The reason I think this is because both my sons have ketotic hypoglycaemia.
Ketotic hypoglycaemia is considered one of the more common forms of hypoglycaemia in children, especially during illness. What is less common is for it to persist as an ongoing condition.
Most young children might experience a hypoglycaemic episode during a virus or stomach bug. My sons experience hypoglycaemia not only when ill, but also if they fast longer than around 10 hours overnight or four hours during the day.
The current medical understanding is that most children grow out of ketotic hypoglycaemia by around age five.
During episodes, children can vomit repeatedly and develop breath that smells like acetone or nail varnish remover. This happens because ketones build up in the blood as the body burns fat to raise blood sugar levels.
What is unusual in my sons’ case is that during hypoglycaemic episodes, both have also shown raised ammonia levels — hyperammonaemia — which can sometimes indicate an underlying metabolic issue.
I panicked a bit recently after realising how harmful elevated ammonia can potentially be to the brain and body. I immediately thought about my brother, who later developed epilepsy, and contacted both Dr Bromley and my son’s metabolic specialist, who has been carrying out testing throughout this process.
After meeting another valproate-exposed family whose child also experiences ketotic hypoglycaemia, I realised this might be part of something bigger. Maybe it turns out to be nothing. I genuinely don’t know.
What I do know is that my son’s hypoglycaemia is not improving, and he will be seven in September. During episodes he can become jaundiced, and more recently he has developed tremors and spasms in his foot when his blood sugar drops — something that never happened before.
If you’ve read Helen’s story about my mum in the shared stories section, then you’ll know my brother spontaneously developed epilepsy at 19 despite there being no family history of epilepsy. He spent the next 18 years trying to get answers and trying to control his seizures.
He also suffered severe gastrointestinal issues and vomited multiple times a day. Looking back now, I wonder whether what appeared to be a gastrointestinal condition may actually have been related to an undiagnosed metabolic issue.
Not many people realise that untreated metabolic disorders can sometimes present with gastrointestinal symptoms, just as severe hormone deficiencies can.
The challenge I face now is translating all of this into something useful in a clinical setting.
I’m not expecting miracles, and I know there may not be easy answers. But meeting those other families lit a fire in me.
And I’m not stopping now until we know more.