Blog

Through the Rare Project we introduce you to the people behind their rare conditions.

Lachlan

Lachlan is a happy little boy who loves all the usual things a boy his age likes including all things Lego.  Outwardly you would never know that he has a rare condition!

Lachlan at present is one of only 5 children in the world with the neurological condition Periodic Hypothermia and the only child in the UK.  Lachlan has three distinct temperature drops.

One that happens randomly regardless of outside weather conditions.  His core body temperature drops under 35, and has been as low as 28.  One occurs when he is unwell or beginning to get unwell.  His temperature will fluctuate continually for a few days between about 31 and 34.  The last one happens about twice a year.  He gets extremely tired and sleeps about 16 hours in a 24 hour period.  His core temperature stays around 34 and struggles to rise for about 4 weeks. 

The impact on these temperature drops is considerable to Lachlan.  During a drop we have to try everything to increase his core temperature and it can take some time before it has an affect.  After a drop he can be tired and lethargic.  It can also make him feel dizzy, emotional and clingy.

As his condition is so rare the consultants are unsure how to treat him.  He currently takes 25mg of Topiramate twice a day as one of its side affects increases temperature.  This medication also impacts in other ways on Lachlan and can affect his concentration, increases tiredness, causes restlessness and reduces 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.