White Sutton syndrome

[Usernameusername1]

I wanted to share our story to raise awareness of the condition.

White Sutton syndrome was only discovered around 3 years ago. It's not known how many people it affects but it could be as many as 1 in 500 autistic people. As it's not well known or routinely tested for there are only about 100 known cases, my ds is one of them.

It's main symptoms are mental and physical development delays, autism, eye and vision problems, digestive issues including unsafe swallow, low muscle tone, and a small skull. But the symptoms and severity is very wide ranging.

We first knew there was an issue with ds at the 12 week scan when the Nuchal translucency measurement was over the normal range. No reason why could be found but there were concerns in regards to brain development later in the pregnancy.

He wouldn't feed when born and was tube fed until about 10 weeks old. He was diagnosed as moderately deaf at 12 weeks, then very far sighted with a sever nystagmus around 4 months. His development was extremely slow. 10 months for head control. 18 months to sit. At 2 he can get on all fours but doesn't move forward yet. He doesn't stand or pull up. No communication and can't properly feed himself.

It is likely that he will develop both physically and mentally but it will take time. He maybe 5 before he reaches the level of a 2 year old. We're also told the best we can hope for is borderline normal intelligence. Most the kids also have some form of autism but are usually friendly, affectionate and sociable.

Some children also just have autism without the health issues and development delays. It depends what error they have on the effected gene which is the pog z gene.

If any of this sounds like your child then have a look at the white Sutton syndrome foundation there is loads of info there. Some of the kids do also have a particular look too them, but not all and the similarities seem to fade as they get older.

[stucknoue]

Thank you, very interesting, never heard of it. Dd was genetically tested 16 years ago now and nothing was found then. She has autism, feeding issues (especially as a newborn but even as an adult) and low tone, her head however is larger than average!

[BlackeyedGruesome]

Thank you. It is always helpful to read about a variety of conditions and one never knows when it will be helpful to others.

[Tomtom1983]

My daughter has just been diagnosed with WHSUS, she’s 4 and it’s been a long and scary time waiting for a diagnosis. It’s good to know she’s not alone and neither are we as parents, she’s such a beautiful gentle girl, I hope your LO is doing good :)