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About jhoroho

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    Mother of a son with NCS/POTS, ADD, Migraine headaches
  1. Thank you for the response. Any additional information on this is helpful. I would like for him to get on an IEP for school so he can have the help he needs.
  2. Has there been any studies linking NCS or POTS to ADHD or ADD? My 13 year old son has been diagnosed with NCS, but I think it may be POTS. The doctor treating him said the two terms are almost interchangeable, but I have read different. My issue is that he also has other issues including migraine headaches, frequent nausea and vomiting, and ADHD (more ADD). He is having a lot of problems with attention and concentration at school. I am trying to get help from his school, but they have to do their "testing" before he can qualify. Does anybody know if there is a link between these issues t
  3. Thank you so much. The more I've been reading on this subject, the more things are connecting. He was dx with ADHD and migraines both about 3-4 years ago. He has had some nausea and abdominal issues 2 years ago and was actually tested for celiac. His abdominal issues have seemed to clear up. It seems these all could be related. He is not currently on any ADHD meds. He had been on Strattera, but one of the possible side affects is hypotension, so we took him off of it over 8 months ago (thinking this is what was causing his problems). He also has mild asthma. The attention portion is th
  4. Thanks. Any help would be great. Does anyone know much about "brain fog" or lack of attention? He was diagnosed with ADHD with the majority of it being attention deficit. Could this be linked to the NCS?
  5. I think the propranolol is to keep his heart rate down. Resting HR prior to the tilt was 53. Within 3 minutes of raising the head up, his HR went to the 90's, then dropped and went into asystole. I think his theory is if the heart rate does not go up, it will not drop. The test was just done last Tuesday. He has a follow-up with the same cardiologist this Friday and a new appointment with a pediatric cardiologist June 1. Unfortunately, I work for a hospital. Because of that, the network on their insurance is somewhat limited. I think they want us to utilize them as much as possible. I
  6. He has increased his salt intake, takes 20-30 minute to get up out of bed while drinking gatorade, and is almost constantly drinking gatorade. I guess my question is how serious is this? He was in asystole for a long enough time that it worried the doctor and both RNs doing the study. The doctor even said this is one of the worst studies he has seen, and never one that bad in someone his age. Is this something that could possibly quite serious in regards to morbidity, or more of a lifestyle modification?
  7. My 12 year old son was just diagnosed with Neurocardiogenic syncope. The doctor who did his tilt table was very concerned due to an extremely prolonged asystole time and he stated several times that his T-wave inverted. He immediately put him on propranolol and mentioned that a pacemaker my be an option. I did not expect this. The test was done because he has been presyncopal and passed out 2x in the last year. Is this something to be very concerned about? Could this be a life-threatening issue?
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