I am sitting here eating the most ridiculous dinner ever (one protein bar, one Klondike bar, one Diet Pepsi), feeling quite proud of myself for not having a vodka martini instead.\u00a0 Frankly, I feel like crying.<\/p>\n
As I mentioned in one of my first posts, O\u2019s latest tic blocks his airway.\u00a0 This is not the first \u201cchoking\u201d tic O has had.\u00a0 He had a weird spasm in his neck \u2013 he called it \u201crooster neck\u201d \u2013 that quickly morphed into throwing his head back so his chin pointed straight up into the air.\u00a0 Breathing was difficult in that position, and we or he had to grab him by the hair and force his head back into a more appropriate attitude.<\/p>\n
The whole thing looked weird, but we learned to manage it, as we have learned to manage so much.\u00a0 The more severe tics O has had in recent years often involve body parts becoming locked in unnatural positions, and he usually needs help unlocking.<\/p>\n
The newest iteration of the tic is entirely internal.\u00a0 We are not entirely sure of the mechanics of the tic, but it appears that O\u2019s epiglottis slams down over his trachea and does not release until O\u2019s airway is forced open.\u00a0 O has learned to hurl himself over the arm of a chair or sofa to reopen his airway, but if no furniture is handy he must signal for help.\u00a0 Thus far, his airway has not reopened without assistance.<\/p>\n
The funny thing is, O\u2019s tics are worst in spring and fall.\u00a0 There seems to be a link between O\u2019s seasonal allergies and his tics.\u00a0 O is the only member of our family who is looking forward to winter, because he thinks he will feel better once the temperatures have been below freezing for a while.<\/p>\n
So, today, after an afternoon spent opening O\u2019s airway every 30 seconds or so until the Claritin took effect, I made the time to call an allergist. Previous visits to allergists have been inconclusive or disastrous, but I felt I needed to try again.<\/p>\n
The office in our town was closed, so I called the doctor\u2019s other office.\u00a0 My son cannot breathe<\/em>, I said.\u00a0 We need to punch him in the diaphragm to reopen his airway, and I think allergies are exacerbating the problem<\/em>.\u00a0 The receptionist told me to call the office in my town in the morning.\u00a0 Okay<\/em>, I said, but in the meantime<\/em>, can you point me toward some resources that will tell me what to do if my child cannot breathe?\u00a0 <\/em>No, she could not do that \u2013 what if they gave me advice and something happened? My son cannot breathe<\/strong><\/em>, I said; I think something already<\/strong> has happened!<\/em><\/p>\n O is 15 years old.\u00a0 For most of his 15 years, I have had to fight to get him any kind of medical attention.\u00a0 We have good insurance, and we are fortunate enough to be able to pay for whatever the insurance does not cover.\u00a0 But I keep running into walls.<\/p>\n Sometimes, like today, I run into people who just do not seem to care or who are not listening.\u00a0 I would have accepted \u201cTake someone who cannot breathe to the ER!\u201d as a legitimate response, even though it is not necessarily the best advice in our situation.\u00a0 When rages, outbursts, and meltdowns were our biggest concerns, before we knew what was happening, I often encountered people who refused to listen.<\/p>\n One clinic refused to talk to me because it was after noon on Friday, and everyone working there was looking forward to going home and did not want to deal with a preschooler in crisis.\u00a0 Two of the doctors we have seen decided \u2013 and told me, while O was in the room \u2013 that my son was too annoying to treat.\u00a0 How doctors who specialize in behavioral issues, with waiting rooms full of ads for ADHD drugs, can say things like that is beyond my comprehension.<\/p>\n Other doctors refuse to believe us.\u00a0 We saw two doctors about O\u2019s earlier choking tic.\u00a0 Oh, he can breathe<\/em>, they said, Don\u2019t help him<\/em>.\u00a0 They also assured us that people with TS do not tic in their sleep, although O tics so much in his sleep that sleeping in a hotel room with him is impossible.<\/p>\n Another, when O was young and clearly terribly depressed, told us children do not get depressed.\u00a0 \u00a0\u00a0Yet another doctor we saw, when we feared that O actually had multiple disorders, told us that that was not possible.<\/p>\n So today I found myself staring at the telephone, wondering what I was going to tell the next doctor I called.\u00a0 My son seems to be having a tic consisting of an epiglottal spasm,<\/em> I would say; seasonal allergies make it worse, so we are having to perform the Heimlich maneuver twice a minute to keep his airway open<\/em>.\u00a0 Who was going to believe me??\u00a0 Paging Dr. House\u2026.<\/p>\n