Paroxysmal Tonic Upgaze

Posted by mrsdykstra @mrsdykstra, Jan 6, 2019

Hello All,

I have come to this site in hopes that someone could shed some light on the diagnosis my 6 month old daughter had received. Paroxysmal Tonic Upgaze Syndrome.

We have an appointment with the neurologist Monday morning. I have had numerous sources tell me I should push for an MRI. Are the eyes rolling back into the head a symptom of anything else? Since there is no test to confirm this disorder and it being extremely rare, I am worried that she may be under diagnosed

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@mrsdykstra welcome to Mayo Clinic Connect. I am not familiar with Paroxysmal Tonic Upgaze Syndrome. Is it like a seizure or more of a movement disorder. The most recent publication I could find was in 2017, it does list the pediatrician that wrote it and list his email. It would be worth a try to email this physician and see if he could give you any insight. I have a rare disease and that is how I found my specialist… by emailing a kind physician that was an expert in the disease. Hope this helps:

Corresponding Author: Dr. A.G.A.R. Galappaththi MBBS, DCH Registrar in Paediatrics, University Paediatric Unit, Lady Ridgeway Hospital, Colombo 08, Sri Lanka


Hi, @mrsdykstra – I'd like to add my welcome to Mayo Clinic Connect. I can imagine you have many questions with your daughter's new diagnosis of Paroxysmal Tonic Upgaze Syndrome, especially as it's rare.

How did your visit with the neurologist go yesterday?


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