Do you know what is PTU ? It stands for Paroxysmal Tonic Upgaze. Its a rare condition that characterized by episodes of sustained upward deviation of the eyes, while the chin is typically held low often with incomplete downward saccades (fast movement of an eye) on attempted downgaze(according to Mr Wiki). Hubby and I thought that our youngest has this condition, because he was showing all the signs and its symptoms.
A couple of weeks ago, we noticed that he suddenly became so quite and subdued. He was not responsive and active like he used to be. His behavior was a bit queer. Then we noticed something strange about the way he look. It was like blank, empty, a space in between, then I saw his eyes went up, rolled side to side and his chin down trying to looked at me straight. It got me so scared, and dont know what to do. I was devastated and felt myself weaken, to see my son in such state, it broke my heart to pieces. We took him right away to the nearest clinic and got a referral to a Pediatric Neurology clinic. We searched about his condition in the net and found out about this PTU. After we read about it, we were definite that thats what he got, coz of the symptoms his showing, the rolling of eyes, chin down in order to see, and shake his head afterward. Physicians don’t know what causes this illness, up to now its still a mystery according to what Ive read in the net. Study shows its benign, so in time he will get better. I was so glad to know that! Still I cant help myself to worry coz this might affect his development. Ive notice when he started having this condition, he stop responding and up to now he only knows the words that I taught him before this occur. I hope and pray that it will go away soon, I cant take it to see him like this. Its so heart breaking for a mother.
He had his EEG 2weeks ago, the clinic told me that the result is normal. This reminds me of what Ive read about PTU that the result could be negative. Right now.. hubby and I are not sure on what to do. The other day we took them to another Pediatric care at Westminster. Its kinda far from our place but hubby trusted the people there. its not that we dont trust the previous clinic, we just want to hear another opinion about my son’s case.
Right now my little guy is doing well, he is still having episodes like everyday, but not that often like the first week he got this. Im happy to see him running around the house, laughing and screaming , and playing with his big brother. Im watching him 24hrs a day, follow him around the house, make sure that he will not fall down and hit his head. I believe this is the toughest of all trials that we’ve encountered. I was not able to take it at first, I almost had a nervous breakdown, thank God i was able to control all my emotions, anxiety and depressions. Somehow I feel a bit relieve now, I know things will get better coz God is with us, He will take good care of us.
Heres a video of his first episode.