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. Frankly, I feel like crying.
As I mentioned in one of my first posts, O’s latest tic blocks his airway. This is not the first “choking” tic O has had. He had a weird spasm in his neck – he called it “rooster neck” – that quickly morphed into throwing his head back so his chin pointed straight up into the air. 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.
The whole thing looked weird, but we learned to manage it, as we have learned to manage so much. 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.
The newest iteration of the tic is entirely internal. We are not entirely sure of the mechanics of the tic, but it appears that O’s epiglottis slams down over his trachea and does not release until O’s airway is forced open. 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. Thus far, his airway has not reopened without assistance.
The funny thing is, O’s tics are worst in spring and fall. There seems to be a link between O’s seasonal allergies and his tics. 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.
So, today, after an afternoon spent opening O’s 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.
The office in our town was closed, so I called the doctor’s other office. My son cannot breathe, I said. We need to punch him in the diaphragm to reopen his airway, and I think allergies are exacerbating the problem. The receptionist told me to call the office in my town in the morning. Okay, I said, but in the meantime, can you point me toward some resources that will tell me what to do if my child cannot breathe? No, she could not do that – what if they gave me advice and something happened? My son cannot breathe, I said; I think something already has happened!
O is 15 years old. For most of his 15 years, I have had to fight to get him any kind of medical attention. We have good insurance, and we are fortunate enough to be able to pay for whatever the insurance does not cover. But I keep running into walls.
Sometimes, like today, I run into people who just do not seem to care or who are not listening. I would have accepted “Take someone who cannot breathe to the ER!” as a legitimate response, even though it is not necessarily the best advice in our situation. When rages, outbursts, and meltdowns were our biggest concerns, before we knew what was happening, I often encountered people who refused to listen.
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. Two of the doctors we have seen decided – and told me, while O was in the room – that my son was too annoying to treat. 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.
Other doctors refuse to believe us. We saw two doctors about O’s earlier choking tic. Oh, he can breathe, they said, Don’t help him. 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.
Another, when O was young and clearly terribly depressed, told us children do not get depressed. Yet another doctor we saw, when we feared that O actually had multiple disorders, told us that that was not possible.
So today I found myself staring at the telephone, wondering what I was going to tell the next doctor I called. My son seems to be having a tic consisting of an epiglottal spasm, 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. Who was going to believe me?? Paging Dr. House….
When tics interfere that much I can only imagine what you are going through. There has to be a Dr. in the area that will take you serious. That is what this site is for to help us find what we need through other people who have been there. I did not go but I heard Dr. Abba Cargan in Springfield was good 908-233-5000. Someone should supply you with an 24 hr emergency plan. You should know where to go for help no matter when you need it. Hopefully you will find the right help.
Wow. I feel for you guys, and especially O. Most doctors have horrible bedside manner unfortunately. There is an elderly gentleman in NYC and in Engelwood Cliffs who is a real angel though and he has seen everything and anything in his 50 years of practice. If you are local to that area, or even if you are not, let me know if you would like his contact information. Best of luck.