I've posted here before about my sons aortic dilation, thank you very much for your responses!
Something new has cropped up. This past year my son has had 9 shaking spells(central/whole body radiating to limbs) followed by cyanosis of his lips and mottling in his legs and arms, sometimes cyanosis there as well with some facial involvement of the muscles(slight drooping like a frown). These always happen 15-20mins after waking up from a nap and having a drink, last between 2-15mins and self-resolve. We have video, the neuro ruled out seizures saying he was too aware and he turned blue too quickly, she thinks it's his heart and went to find cardio who was out of office that day, however cardio has already said the only cardiac explanation would be induced by exercise, which is not the case(we are waiting for the cardio to see the video still, he is going off previous verbal explanation). My sons pediatrician called and said they resemble Tet Spells but his physiology is wrong and we will probably have to run this by his surgeon as they are all perplexed as to what is causing this.
My question: Is there a mechanism in repaired TGA (ASO w/ Lecompte), repaired VSD/ASD (no residual shunt), PDA ligation with resulting ascending aortic dilation of 2.7 cm(z-score 5.8), aortic root dilation 2.4cm, mild AI, mild/trivial regurg in all valves, trivial pulmonary branch stenosis, complete right heart block that would resemble a tet spell? I have not seen shaking as a symptom of a tet spell, how would this explain the shaking? And he never squats, just sometimes brings his knees up to his chest at night and while in the carseat, but not during an episode.
I am on pins and needles until the cardio reviews the video. Some things posed to me by others are a vascular ring and TIA's, I realize without seeing the video it his hard to say but wondering if you had come across anything similiar to this in the past, any insight you have to offer is greatly appreciated!!