Three-year old Lennie suffers from side effects from the
medication he takes for a rare and potentially fatal condition, but
our research has helped lessen the impact of his treatment on his
body so that he can feel like other boys his age.
Our son Lennie is three and a half years old and he's just like
any other little boy in Manchester. He loves swimming, playing
football and going to pre-school with his friends.
What no one can see from the outside is that Lennie suffers from
a rare condition called congenital hyperinsulinism, which means his
blood sugar levels fall extremely low because his body produces too
much insulin. We have to monitor his blood sugar levels throughout
the day and always make sure we carry snacks in case his blood
sugar drops too far.
He was diagnosed with the condition at just 7 months after he
had a seizure and was rushed to hospital. The doctors took some of
Lennie's blood to be tested, and when they came back they told us
his blood sugar level was dangerously low, and it was due to a rare
disease. We had no idea what congenital hyperinsulinism was and we
were anxious about how it would affect his life.
Fortunately, there are good medications for congenital
hyperinsulinism and Lennie was put on one called diazoxide, which
has stabilised his blood sugar levels so he can run around and play
just like any other little boy of his age.
But diazoxide comes with a horrible side effect - excessive hair
growth. At first the hair on Lennie's head started to grow very
quickly and became very thick. This wasn't too bad, but when the
hair started to sprout on his arms and lower back, it was really
stressful not just for Lennie but for the rest of the family too.
We were worried about how unusual the hair looked on such a young
boy and what it would be like if more hair grew over time.
We want him to feel just like everybody else.
We went to Lennie's consultants and explained our worries to
them. We were relieved to hear that researchers were also
interested in reducing the side effects of diazoxide and that
Lennie's doctors were themselves running a study into fish oil
extracts, which they thought might help Lennie. Taking the fish oil
extracts helps to manage blood sugar levels, which means you can
take less diazoxide and still get the same impact - that is, with
fewer side effects.
Around the same time, family and friends saw an article in the
local newspaper about a little girl with congenital
hyperinsulinism, who had been on the study, and had seen a
reduction in hair growth. That cemented our decision to let Lennie
try it too.
We started to give him the fish oil supplement alongside his
medication in September 2013 and the results have been great. Not
only has his hair growth lessened, but we have been able to reduce
Lennie's diazoxide dosage 0.5ml a day, as the fish oils are
maintaining his sugar levels so well. No parents want to see their
child on lots of medication so we're thrilled with the outcome.
Research like this is so important to the NHS and to improving
people's quality of life.
Not only does it lead to the development of better treatments
and medicine, it also helps raise awareness of rare disorders like
Learn more about clinical research at
The Royal Manchester Children's Hospital and how you can
get involved with research.