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cub

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Everything posted by cub

  1. No she hasn't really checked him for anything other than the typical blood panels and the aso. When she said she was going to look into it, I was hoping she would look for more but the ASO was the only titre on there other than a couple of the regular things they order, blood counts, liver enzymes, etc... I'm not really hopeful now. She is pretty good when I ask her for stuff but will only go so far. She is much too busy treating viruses and colds, I think. I stay with her because my son has such a complicated history and she I feel she does care. But some Drs. are so locked into having to see scientific proof and the good Drs do get too many patients, but that is another story. She admitted right out when my son was diagnosed with tourettes she wouldn't have ever thought of that (or tics). I know she was thinking anxiety. Thing is his presentation is so atypical, so maybe because of that she might look into other things. She ordered test for pheochromocytoma when I asked before he was diagnosed with Dysautonomia, because when you look symptoms are similiar. So I can't discount how much help I can get from her, I think I just have the be the one with the specific requests and then see what happens.
  2. Last night was horrible with tics but he was so tired all evening he could barely stay awake. In fact after the tics quieted down he fell asleep in the chair and stayed there all night. He is still stuffy and his cheeks are tender so I did call and requested she extend the antibiotic. We'll see what she says, she might not. Thanks for all the help! Really, you just don't know where to turn. I don't know if he has this but I know you all understand having a chronically sick child with few answers. Update, Well, she refused to extend the antibiotics ;( His strep titres were 160 with a normal range of 1-200.
  3. We are on day 7.5 of antibiotics, since day 2.5 he has had significant reduction in tics, as in here and there vs major ticking for 2 hours every night where he can only just lay in a recliner with all limbs and his body constantly moving, and he had also been starting to have them noticeably during the day at school. These are so exhausting. He did have some last night but the episode was much shorter. Touch has been another trigger and I have given him several hugs and no tics. He has had some tremors but these can be a manifestation of his dysautonomia, adrenaline dumps or surges. He also has some major anxiety but comes and goes with less frequency over the last 10 months since he has been on Clonidine, but when it is there, OH Boy! Last night there was some increase in his vocal tics. It was raining out and he felt agitated. Weather also can affect dysautonomia but with all the recent info on being diagnosed with tourettes last month I am not sure what to think of symptoms. Dr. put him on antibiotics for a sinus infection but I was also talking to her about this panda/pans possibility and she is open to it, took blood work last week to check titres and other inflammatory markers. All blood work and titres have come back fine. Now that the titres have come back fine I don't know if she will look further into this and I don't know what if anything to expect from 1 week of antibiotics. Thursday morning will be his last dose of antibiotic and I won't be able to talk to the Dr. until Monday. Should I try to talk her into extending the antibiotics or should I just let it go and see what happens when he goes off of them? We are just trying to determine if the tics showing up when his dysautonomia flared was coincidence or tourettes that existed but showed up because of the insult to his body from all his other symptoms or if this might be PANDAS/PANS as a result of some infection or virus that caused the dysautonomia. I do know that over a couple of months he was a way different kid, ticking and super anxious and depressed. That was 2 years ago and my son is 17.
  4. Hi, I posted this under another thread and then realized I was hijacking another thread. So I am reposting my question here. My son has been struggling with a virus for a couple weeks, and has also had much more tics and anxiety (a total blowout one night until he collapsed from exhaustion). I don't know that he has Pandas/Pans but I think it worth looking at even if it eliminates the possibility. I am cautiously excited that my Dr. agreed with ordering the titres test but then didn't because she wanted to investigate exactly what is needed. The Dr. prescribed Omnicef 300mg AM and PM because he has a sinus infection and flonase. Will taking the antibiotic now affect the titre test if it is done in a day or two? Also, have I read that he might possibly show an improvement being on the antibiotic that we might observe and then get worse when he goes off of it (the Dr. has it a higher dose for 8 days rather than 10 days) and that if that happened it would make a stronger case for it to be Panda/Pans?
  5. I PM'd also. AND I am cautiously excited. My son has been struggling with a virus for a couple weeks, and has also had much more tics and anxiety (a total blowout one night until he collapsed from exhaustion). I don't know that he has Pandas/Pans but I think it worth looking at even if it eliminates the possibility. I am cautiously excited that my Dr. agreed with ordering the titres test but then didn't because she wanted to investigate exactly what is needed. The Dr. prescribed Omnicef 300mg AM and PM because he has a sinus infection and flonase. Will taking the antibiotic now affect the titre test if it is done in a day or two? Also, have I read that he might possibly show an improvement being on the antibiotic that we might observe and then get worse when he goes off of it (the Dr. has it a higher dose for 8 days rather than 10 days) and that if that happened it would make a stronger case for it to be Panda/Pans?
  6. Did you ever locate a Dr. willing to explore this? If so can you say who?
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