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spaceorca

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About spaceorca

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  1. The heat is definitely causing my son more problems than usual this summer. He doesn't sweat, so we know the summers will be bad--it has always been hard for him to spend much time outside in the summer. But somehow this summer has been even worse than the previous ones. He sometimes gets relief from a coldpack. We have one of those gel packs that can be reused--you stick it in the freezer to rechill it. My son will wrap that in a towel and place it around his neck for cooling. Hang in there!
  2. My son has had fatty liver for at least the last 5 years. He's just 22 now, has eaten almost no fat during the last 10 years (due to Crohn's disease), and had his first tastes of alcohol just during the last few months. (I know some parents wouldn't know what their teens drink, but he's been too sick to go out of the house much of this time so I know!) The fatty liver hasn't affected his liver functions (yet, anyway) and the doctors can't explain it. They agree that it's very weird, but it seems to be linked to some type of systemic disease that (we all assume) caused the Crohn's, POTS, ot
  3. I also am so sad to hear about this--it must be so hard for you and your family to bear. In addition to Mayo and the Cleveland Clinic, which dsdmom mentioned, I think that Johns Hopkins and the U of Pennsylvania both have helped some children with severe dysautonomia. But I don't have firsthand experience because my son was in his teens when he first became ill. I think that almost any major children's hospital would give you better support than it sounds like you have currently. Are you near a metro area with a major children's hospital? We'll be thinking of you, Debby
  4. My son also had a sleep study that showed he got no deep sleep. But the sleep doctor dismissed that, saying "no one gets deep sleep in the sleep lab." The study did rule out apnea, narcolepsy, and restless legs--so that was somewhat helpful. But from my son's daily reports, and my anecdotal observations, my guess (and his) is that his problem *is* exactly what the study showed: no deep sleep. We see his sleep doctor again later in the summer, and I'm going to ask him this question: If a patient's problem *is* lack of deep sleep, how do doctors determine that (given their assumption that n
  5. Sandy, Mack was also on reglan for about 5-6 months- vile drug. I do get angry when I recall how many phone calls I had to make to his ped GI to get him off & on the erythromycin. His nurse adamantly insisted Mack was fine, perfectly safe drug, Grrrrrr. Mack actually blames the tremor on that. Mack may be right: Tremors are a well known side effect of reglan. I don't understand why doctors prescribe this drug for kids! Sometimes the tremors and other neurological symptoms subside within a few months after stopping reglan--how long has he been off? You might want to note the problem to
  6. Thankful, My son never tried tegretol, but I know that trileptal has a very different side effect profile. Although they're related meds, the big difference is in side effects--trileptal is a variation that addressed some of those side effects. Here's one site I found quickly on the web, summarizing some of the differences I'd heard about: http://www.psycheducation.org/depression/meds/trileptal.htm That site deals with tegretol and trileptal used for bipolar disorder, rather than for POTS and similar conditions. But the comments there are similar to the ones the neurologist made 5 years ago
  7. Paint the Moon, I hope this report will give you a mental boost. I'm posting the note separately for other members as well. Dr. Low and the Mayo autonomic team just published a study of 116 women who had POTS while pregnant. There were no adverse events, for mother or baby, related to POTS. And overall, the rate of complications in pregnancies/deliveries with POTS mothers were no greater than with other mothers. The study also identified a "trend toward modest improvement" of POTS symptoms both during pregnancy and after delivery. The improvements weren't large, so the researchers conclu
  8. A doctor in the Mayo Clinic's pain department prescribed nortryptiline for my son, who has agonizing pain in various parts of his body. After taking the medication for a few days, my son's urinary retention (which he'd reported to the pain doc among other autonomic symptoms) got much worse--he had to be catheterized to get the urine out. We called the Mayo pain doctor back and he said rather blandly, "oh, yes, nortriptyline often has that effect." Of course, he didn't tell us that in advance and apparently didn't think about the fact that my son already suffered from urinary retention: he
  9. Yes, Dan has lots of tremors in different parts of the body. You reminded me that he used to have them quite frequently in fingers and his hand. Those have not been nearly as common during the last few years. I think Trileptal, which he's taken for years, may have reduced those. But he still gets fairly severe tremors in his legs. Those come and go--I haven't noticed any particular patterns. When the tremors or tingling nerve sensations are particularly bad, he'll take a xanax--that often helps with the tremors. Sorry to hear Mack has this!
  10. Keely and Pandygirl, My son also has been diagnosed with pandysautonomia. He has been tested for AAG, twice I think, but the results were negative. His doctors say: "The pandysautonomia probably is caused by an autoimmune reaction. AAG is just one type of antibody that identifies an autoimmune reaction; there are at least dozens (probably hundreds) of others that we can't identify yet with clinical tests." In other words, pandysautonomia, POTS, and other phrases identify the system that is broken in the body. For most patients, doctors don't know what is causing the damage. For ones who
  11. Many people (including me) like gluten-free breads better when they're toasted. But watch out for your toaster: It's impossible to clean out the crumbs, so you'll have to get a new "gluten free" one. If you live with wheat-eaters, they can continue to use the old toaster while you use your gluten-free one. But you may need to put a label on it so they'll remember! I like the Whole Foods line of gluten-free breads, scones, etc. I've never tried baking my own gluten-free bread (I'm just not much of a cook) but my husband makes me gluten-free belgian waffles. They are terrific! If you happe
  12. I am curious about this as well. I have pestered various doctors to try IVIg with my son--numerous medical reports suggest that it helps some patients. But the treatment is very expensive, and doctors have to complete extra paperwork to order it. That seems to make them reluctant, even when I've said we would pay for the treatment ourselves rather than seeking insurance reimbursement. I was never able to get a doctor to order it. Our son's current neurologist said last year that he probably would have ordered IVIg if he had treated Dan earlier in the course of his disease, but that he didn
  13. Elfie, I'm sorry you're feeling so stressed! Autonomic dysfunction is such a disabling disease that I don't know how any patients cope as well as they do. I don't have any magic coping strategies, but my heart is with you! Debby
  14. My son definitely suffered persistent nausea unrelated to medications--I think it's quite a common symptom with POTS and other autonomic disorders. One cause is gastroparesis, slowed emptying of the stomach. Because the stomach and intestines don't work normally, they cause feelings of nausea. Another is from the POTS blood-flow problems--feeling dizzy is closely related to feeling nauseous. Some people feel one more than the other. The best non-prescription treatments my son found were ginger tea and dramamine. Avoiding a lot of movement (especially car rides) also helped. Some people
  15. Mestinon has been the drug that helped my son the most. He started with a very low dose, just 1/4 of the 60 mg pills taken 4 times a day and worked up to 180 mg total (2 full pills and 2 halves, spread over the day). He has severe Crohn's Disease and gastroparesis along with POTS and, as another patient mentioned, the Mestinon actually helps with his GI symptoms. In fact, it probably has been more important in maintaining motility than in its other effects. We have found that timed release pills don't work well for my son (probably because the slowed gastric motility and prior intestinal su
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