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RDCC

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  1. Experiment a success . . . went to California sea level, and no facial tics at all, the auditory throat clearing/cough dropped to about 1 per 15 minutes. Back at altitude 3 days later, and his throat clearing/cough is back to about 1 to 2 per minute . . haven't seen any facial movements yet but we haven't been here 24 hours yet, which is how long it took the last two times we returned to altitude. The mini-coughs are annoying, but at least not as frightening as the ghoulish grimaces. I did go and see another doctor out there who was a full pediatrician, but with additional training in nutrition and eastern medicine, and she says I'm on the right track accoring to all the disciplines: the descent in altitude, the epson salt baths, the B12, the magnesium/potassium supplement, and some calming teas like camomile and peppermint. I also have been trying 1 orange 80mg baby aspirin to mildly decrease swelling and thin blood a little, and she gave me a chinese herbal remedy made by Chinese Medicine Works in San Fran called "Quiet Calm" which has a bunch of things the Chinese think would calm excess nerve activity. And just for grins I also picked up some cholorphyll drops that purport to assist altitude related symptoms. All in all seems to be diminishing with time, the worst being two weeks after the vaccine, which was what the doctor expected, if it were somehow related to the irritation of building tidors. If anyone else has any ideas to de-stress the mid-brain, I'm all ears.
  2. My doctor said he'd report to Vaers, I'll follow up with him to make sure he does. I self reported to VAERS when I got Bells Palsy following the Swine Flue vaccine just in case, but that wasn't nearly as direct a relationship as this one: ordinary perfect boy, flu mist, sudden and extreme tics a few days later. Just knowing that caused it doesn't bring me much relief however if the results are permanent. The tics returned when I came home to altitude, so I'm going to take him to sea level tomorrow and see if they exist there. Maybe its not pressure, maybe its hypoxia in damaged neurons . . . also a symptom of altitude. God, I wish there was an undo key somewhere . . .
  3. Indeed, took him off ALL dairy!
  4. Very wierd story to tell . . . I posted under the flu shot heading a few days ago, but what has happened is so bizarre, I thought it warranted its own discussion. My 9 year old son started with full facial grimaces last weekend (about five days ago), about a week after getting a flu mist. They appeared out of nowhere, no ramp up, no facial tics that I "missed" and then suddenly "noticed". They were accompanied by a throat clearing, but only on a larger grimace . . I think the muscles in the throat were siezing or tic-ing too. He had no other symptoms - no fever, no lethargy, hadn't been ill, and he didn't know they were happening. So, I whipped him into the doctor on Monday morning, where he managed to mask them for the doctor . . he didn't see a thing, and pronounced him fine. Right after, I filmed him eating pizza, where his tics were present every 15 seconds to the point of seriously disrupting his eating, with strange pauses, and joker-like smiles, but not really smiles. I edited down more films of him reading and watching TV, sent it to the doc, who then ordered ordered him an EEG for friday, when he had a day off of school. Since he seemed OK, figured we could wait. Well, on Thursday morning, his Tics getting worse, I caught one eye rolling back while his other eye was tracking elsewhere. He's conscious and talking, doesn't seem like a siezure,but I have a background in neuro-psych, and know that we're not talking just cranial nerve 7 (facial nerve) involvement anymore. . . . its spreading. So I threw him in the car and drove to the state's biggest city four hours away to go to a proper children's hospital with a neurologist. I live at 8000 feet, and it took two passes to get there. At a pass at 11,000 feet, he tells me he does't feel any facial tic-ing, though the rear view mirrow tells a very different story. Then he says his eye feels funny. Yay, should, because its rolled back in his head again. I speed up. Make it to the ER remarkably intact for hyperventilating the whole way at 75 mph. ER is a big hurry-up-and-wait scenario. We've been in the car a long time, son has to go to the bathroom. 15 minutes later in the waiting room he goes again. 30 minutes later he goes again (this will be relevant information soon). By the time the doctor finally sees him, there's not a tic to be seen. Doctors diagnose him with a tic disorder. The sudden onset, the complete lack of heredidy to support a tic disorder, the total non-existance of ADD or OCD or stress in his life wouldn't sway them to other possibilities. They pushed us out the door. We get a hotel for the night and go out for dinner. I watch him like a hawk . . .not a tic. Son pees three more times. Next day we head back home, back up in altitude. Over the passes, some small tics resume, but barely noticeable. This after five days of unmistakable facial movements reminscent at times of Robert Deniro in "Awakenings" (unfortunately never in front of a doctor). Its Saturday, the tics are gone . . or are at least unnoticeable. So I had a very long talk with my doctor about this, and he finally agrees that I was probably right. This was a reaction to the flu mist. Now he pointed out that he gave 1200 flu mists last year and didn't have any bad reaction, and that the CDC or someone says there is about 1/4000 who does have something that MAY be attributed to a reaction to them, so they aren't statistically bad news, but keep in mind the ER in the big city wouldn't accept the possibility that this was a reaction and wouldn't report it, so it is possibly there is a lot of unreported stuff out there. My doctor is going to report it but we're going to watch him for a while to see what it does. So here is my hypothesis: After you get the flu mist or any other vaccine, your body produced tidors, which the doctor says peaks at 2 weeks after you receive it. So for some reason, after a week, his body's reaction to that caused an increase in intra-craial pressure. Not enough to give him a headache, and for some reason, not a fever, so he must not have been battling the live virus . . but just his immune system in high gear building tidors I guess . . . I had Bells Palsy a year and a half ago that came out of nowhere and only resolved 50%, so I consequently became an expert on the facial nerve (coincidentally), and my research there said the Pons, in the midbrain where the facial nerve erupts from, is the most delicate, most susesptible to demyelination, and if it swells, the faical nerve is most sensitive to disruption because it passes through a very small hole in in the skull behind the ear and can get squished. If the brain and spinal cord was pissed off and swelled up a little, as irritated parts of the body tend to do, I think the facial nerve is a likely first place that may show up. My son hasn't had a reaction to a vaccination before, so we figure there must have been something different about this episode. One cantidate is that in the same week he started drinking milk because the doctor said he needed more calcium in his well check the week before (where he received his vaccination). So he went from virtually no milk, to four glasses a day. The doctor surmised that the sudden raise in calcium levels could have done a number on his potassium levels also, just coincidentally at a time when the his metabolism didn't appreciate the disruption. One more possible cantidate: a month before, he got a body wide rash that looked like chicken pox, except he had two vaccines against that, and they didn't itch or erupt, or have any other symptoms. So the doctor dismissed it as an unknown viral rash. It is possible that rash was born out of a nervous system virus, that was still present in his nervous system and got irritated when the immunization came. So back to the peeing . . .he dumped seemingly liters of fluid in a few hours like I had given him a diuretic and he wasn't drinking, so that fluid had to come from somewhere, so CLEARLY he had was retaining fluid, and I surmise that was also in his brain/spinal cord, because when the fluid left, so did his facial contortions. People with head injuries in the mountains are quickly brought down in altitude, because any slight pressure in the cranial cavity is amplified at altitude. They are also given anti-diuretics, because injured brains swell up. Seems as theough he had a brain injury, and if the ER or doctors had realized this possibility, he would have been given a diuretic and told to descend in altitude. Given the sudden onset and precipitating event of a flu mist, in retrospect seems like that should have been a rule out. Descending in altitude was so profound, I can't think of another explanation. So the moral of the story is that all tics are not born of the the same reason despite what our doctors told us, and I would love someone to look into whether intra-cranial pressure is associated in other people's tics, that could describe the waxing and waning. Maybe all the things people do, like epson salts and camomile, are actually decreasing that . . . and that is why they decrease. Anyone try a diuretic and see what it does to your tics?????
  5. Brand new sufferer here . . and by sufferer I mean parent of a child we just realized is suffering from something the doctors haven't even diagnosed yet, but near as I can tell, its some kind of Tourettes. And when did we notice it? 7 days after the nasal mist flu shot. Our son, 9, says his face was doing things like that before, but I tell you, there isn't a snowball's chance in ###### I could miss what I'm seeing now, so either its a flasming coincidence, or that flu mist brought out something horrible in his brain. My question . . I see a lot of other people notice "worsening" after an immunization, but for HOW LONG? Is this a temporary thing? Or is full bore from here on out? If he did have some subtle blinking and nose wiggling before, we didn't notice it, and would pray it would return to that sub-noticeable level. Now, he is in full facial grimace every 15 seconds when reading, though for some reason, he can maintain a face to face conversation for a while (like he did with the doctor) wihtout revealing them. My other question is, since I have no point of reference whatsoever, what constitutes sever tics versus minor tics? Is facial grimace a common one? So far, no other body part buy head/neck involved. He does clear his throat, but only right after a big grimace, as though his throat is seizing to, and he is deliberately clearing the irritation.
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