LACHLAN

Outwardly you would never know that Lachlan has a rare condition. At present, he is one of only 5 children in the world with the neurological condition Periodic Hypothermia and the only child in the UK. We spoke to Lachlan and his family about their experience of this extremely rare condition.

“Lachlan has three distinct temperature drops. The first occurs at random, regardless of outside weather conditions. His core body temperature drops under 35 (Celsius) and has been as low as 28. The second occurs when he is unwell or beginning to get unwell - his temperature will fluctuate continually for a few days between 31 and 34 (Celsius). The last one happens about twice a year - he gets extremely tired and sleeps for about 16 hours in a 24-hour period. His core temperature stays around 34 and struggles to rise for about 4 weeks. 

The temperature drops have a considerable impact upon Lachlan. During a drop, we have to try everything to increase his core temperature and it can take some time before it elevates. After a drop, he can be tired and lethargic and it can also make him feel dizzy, emotional and clingy.”

He currently takes 25mg of Topiramate twice a day as one of the medication’s side effects increases core body temperature. This medication also impacts Lachlan in other ways – it can affect his concentration, increase his fatigue, cause restlessness and reduce his ability to complete routine tasks.

As Lachlan is the only child in the UK with this condition, his parents have never met or spoken to anyone else who has experienced this. They believe there are 4 other children somewhere in the world but don't know where. 

It would be wonderful if through this project we could help the family connect with others, so they could learn from each other's experiences.