@EmmaSzewczak From Paris to Berlin, Infernal
Midnight Train to Georgia, Gladys Knight
Wichita Lineman, Glen Campbell
Christmas Card from a Hooker in Minneapolis, Tom Waits
24 Hours from Tulsa, Gene Pitney
Amarillo, Tony Christie…
@NatashaHodgson Hooray! An opportunity to plug David Mamet's The Spanish Prisoner (1997) – a masterclass in unease and absolutely chilling stuff from Steve Martin.
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
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
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
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
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
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
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
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
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
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
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