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jordan6000

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About jordan6000

  • Rank
    Newbie
  • Birthday 11/14/1950

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  • Gender
    Female
  • Location
    Virginia
  1. Hang in there, Endure! My son had an ear problem (a semicircular canal went kaput)and we had a devil of a time getting anyone to listen to him. Because he had all the POTS symptoms, and that hadn't been diagnosed at the time (took over 5 years), most doctors assumed it was part of that. It was very difficult getting anyone to focus on his ears because the POTS symptoms were such a source of distraction. And we couldn't get doctors who might have been able to help get an accurate diagnosis for his POTS symptoms to focus because the ENT symptoms were so dramatic. You could see the doctors' brains going into overload. Apparently it's difficult for them if there are multiple concurrent conditions. However it was even more difficult for my son living with multiple concurrent conditions. We finally found an ENT that could set the POTS stuff aside and focus on my son's ears. The guy had zero personality and no bedside manner, but he knew ears. He correctly identified the condition and came sort of close to identifying an effective treatment. When he couldn't get the treatment right, he successly identified someone who knew what to do. It took 4 months of treatment but it worked. Hopefully you will get someone who can correctly identify the condition and the treatment! Hopefully you won't get another dud doctor, but there are a lot of them out there. I know how frustrating this can be. When I get a dud now, I mentally say "next" and move on without a backward glance. Hope you feel better soon!
  2. My son is esentially missing all four years of high school. He was able to physically attend the first three weeks of school each year, at which point his health rapidly went downhill and he couldn't attend anymore. Fortunately he is eligible for Homebound services where the school sends teachers out for the 4 core courses for 2.5 hours per week per course. He took his language requirements on his own for 2 years on-line through Brigham Young University and transferred the credits to his high school. For the 2 year Phys. Ed requirement, we worked with the school to allow him to take both years of PE as correspondence courses, with the teacher giving him writing assignments on health, fitness, and various sports. He took the required driver's ed portion on-line through the state. He took a Psych elective through the district's on-line high school and transferred the credit to his high school. The remaining 2 electives he is doing this year as "correspondence" courses at his school. The teachers assign him work and he does it and turns it in via e-mail. These teachers are doing this out of the goodness of their hearts; there is no requirement that they support him as a homebound student, but they're doing it anyway. He will graduate on schedule this year with a standard diploma. He was accepted early decision at the college he wanted for this fall. His disabilty didn't deter them. He is an A student and with very good SAT scores, so that might have helped. I know what you mean about being too sick for home classes. Sometimes he can't do the whole 2.5 hours. Fortunately we've had some great teachers who have worked in the dark through migraines, taken frequent breaks when he had difficulty concentrating, read material to him while he laid there with his eyes closed because the room was spinning, filled in worksheets/tests with his answers when he was too sick to sit up and write, brought videos he could look at when he felt better-- whatever it took. I'm eternally grateful to the school and his teachers, both the classroom teachers that have supported him and the homebound teachers that stuck with him in very difficult circumstances. Also, my son deserves a lot of credit. He was very determined to graduate on schedule even though there were times he felt so bad that I don't know how he managed to do the work. I'm fortunate to live in a premium school district that is committed to provide special services for those that need it. Even so I can't say it was easy to get him through high school. Next up is college with a whole new set of challenges. I wish you and your son the best.
  3. Hi! I'm real new here. I've learned so much reading your posts and am grateful for the education. My son (17) was recently diagnosed with POTS in November 2008. He has been sick for the last 6 years, and unable to attend school for the last 4 years. He always gets an improvement in his symptoms starting in the late spring , feels better in the summer until October. At that time he takes a turn for the worse, with his symptoms greatly increased. Has anyone had experience with a seemingy cyclical pattern to POTS? I so apreciate your help.
  4. My son (17) has extreme chronic nausea for the last 4 years, and sporadically 2 years before that. He was diagnosed with tachygastria and atypical GERD. He threw up Zorfan and every other anti-nausea drug. You name it, we've tried it. What helped was finding Dr. Kenneth Koch, a specialist in chronic unexplained nausea, at Wake Forest in Winston-Salem, NC, who did an EGG, an electrogastrogram. We found out that his gastric rhythmn was going a mile a minute. He had the motility test as well, but that turned out normal. He had huge levels of acid in his esphogus, but fortunately no pain. He is on Domperidone (for motility) and Prevacid (for acid). Domperidone has given him some relief. We have to order it from Canada. He is still so nauseated that he can't attend school, but he is able to leave the house now and then for a short outing. It was searching for an explanation as to why he had tachygastria that led us to Dr. Hasan Abdallah in Fairfax, VA. He diagnosed my son with POTS in November 2008. We're doing the trial and error thing now in hopes we can find something that will alleviate the tachygastria, which we hope in turn will reduce the acid, which are the major problems, along with the numbing fatigue. I hope you find help. Will keep you in my thoughts and will post again if we find any help for nausea.
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