X Takeover for Children’s Growth Awareness Week 2023: Anthony-Leyton Thomas
Anthony Leyton-Thomas - trustee of CGF, fundraiser and parent of a child with Sotos Syndrome - is running a Takeover Hour here on our X account, TODAY 3-4pm, for #ChildrensGrowthAwarenessWeek. See you here at 3pm! pic.twitter.com/WR0TJ2e6qd
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
Hello! I’m @AnthonyLeyton, one of the trustees of the Child Growth Foundation, and I’m delighted to be taking over the CGF account for the next hour, to share a few notes on my experience of parenting a child with a growth condition. 1/12#CGAW pic.twitter.com/T6xM34PlY4
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
My son Ivo was diagnosed with the overgrowth condition #SotosSyndrome five years ago at the age of 5 – quite late for a Sotos diagnosis. We’d taken him to the GP because we were concerned about him being late to milestones and his amazing ability to trip over thin air. 2/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
At first we thought Ivo had dyspraxia, but the paediatrician immediately recognised a chromosomal condition in his facial features. (People with Sotos typically have high foreheads, prominent chins, and downward-slanting eyes.) 3/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
Thanks to a quick Google, and the info we found on the CGF website, we knew he had Sotos Syndrome by that evening. However, it took the medical establishment a year to agree with us and confirm the diagnosis by genetic testing. The NHS is incredible, but it moves slooooowly. 4/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
Patience is key. If you suspect your child has a growth condition, be prepared to do your research, chase your case, fight your corner, and don’t always take ‘no’ for an answer. Sometimes you have to be a bit of a nuisance to get the result you want. (Still be nice, though!) 5/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
Doctors don’t necessarily ‘learn’ everything about the multitude of different growth conditions at doctor school. It’s easy to think that medical professionals have all the answers but they don’t. They’re just better equipped to find them than most of us. Help them help you. 6/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
If you feel like you’re being fobbed off by your GP or your concerns aren’t being taken seriously, give the CGF a call – chances are the Support Line team can point you in the direction of the resources you need. We’ve just produced this Sotos infographic, for example. 7/12 pic.twitter.com/CYFQX2ddqa
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
The way in which Sotos presents in children varies enormously in both effect and severity. The gene responsible for it – #NSD1 – is involved in the process the body uses to make proteins. And the body makes proteins to do, well, pretty much everything. 8/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
Because so many of the body’s processes require protein synthesis, the impact of a change to the gene can be varied and unpredictable. Sotos Syndrome can be connected with heart and kidney problems, respiratory issues, scoliosis, digestive issues – and, of course, growth. 9/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
Most Sotos kids find themselves much taller than their peers. Some children can face significant cognitive and behavioural challenges. There is often overlap with #ASD and #ADHD. A lot of parents have to learn a lot – of both information and resilience. 10/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
When you have a 4-year-old the size of an 8-year-old behaving like a 2-year-old, people can be less than sympathetic. Which is tough. Sometimes other kids can be unkind too – but they’re mostly less judgmental than their parents! 11/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
Today, Ivo’s doing great and has just started year 6. Like a lot of Sotos kids, he also has an #ASD diagnosis, but he attends a mainstream school and has been doing really well academically. Puberty will doubtless bring its own challenges, but it’s all part of the ride…12/12
— Child Growth Foundation (@ChildGrowthUK) September 19, 2023
