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T_Anna

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Everything posted by T_Anna

  1. He's in a better mood more of the time, but also a bit more manic. I just suggested he shower (it has been weeks) and he lay down again with his head under the covers. Really nervous about how I'm going to be able to get him out to Dr.T's tomorrow. He hasn't left the house since January 25!! T.Anna DS 14
  2. Ok. He was on just 1 pill for over a week so I figured it was ok, but I'll wait, we have appt on Monday. Thanks, T.Anna
  3. DS 14 had been in a non functional flare since mid-December. He hasn't been in school since mid January and we are currently on Doxycycline, Azithromycin and steroid taper. I thought things were looking better last week as he would answer the phone and seemed to have a better attitude. Thursday night I skipped them1 (25g) Luvox SSRI. Friday morning he was fine, but Friday night he was restless, and manic. Today he was really (uncharacteristically) very rude to his father and I. Is that what getting activated in Luvox is like? Restless, manic, rude? Is that maybe the steroids? I'm not sure if I
  4. DS 14 had been in a non functional flare since mid-December. He hasn't been in school since mid January and we are currently on Doxycycline, Azithromycin and steroid taper. I thought things were looking better last week as he would answer the phone and seemed to have a better attitude. Thursday night I skipped them1 (25g) Luvox SSRI. Friday morning he was fine, but Friday night he was restless, and manic. Today he was really (uncharacteristically) very rude to his father and I. Is that what getting activated in Luvox is like? Restless, manic, rude? Is that maybe the steroids? I'm not sure if I
  5. (steroids and ibuprofen cannot be taken together BTW). Just saw this, what are side effects. I have been giving DS ibuprofen and steroid taper?! Yikes! T.Anna
  6. Oh, and we're also still taking 25 mg of Luvox. I will call dr about dropping that pill, don't think it did an ounce of good, T.Anna
  7. Wow! Thanks for this warning! DS14 LOVES Earl Grey tea, he drinks at least 2-3 cups a day (caffeine free). I had no idea that there was a danger and I found an article that describes heart racing, headaches, and stomach cramps-all things DS has been complaining about lately, Yikes! Any additional information is welcome! T.Anna
  8. I am so sorry that you and DS need to go through this. What is TBI? Keeping you in my thoughts. T.Anna
  9. I would recommend buying rapid strep test on Amazon. This way you can test you DD on day 4 at home. We have gotten strep twice while on 3 diff abx. T.Anna
  10. Thanks. Yes, I've wanted to tests him for gene mutations. He does also test positive for mycoplasma and coxsackie (sp?). He tesred negative for Lyme on the various "dtandard tests. His second blood test had shown that mycoplasma went down with all the meds, but strep had actually gone up. I'm also curious since he has contracted a fungus from wrestling, I would test him for candida too (in case it was from the meds). But I think that it will be a long time before he re-enters society and can go get another blood test at the lab, I am, probably unwisely, putting a lot if hope in the IVIG to he
  11. THANKS for all the responses! He finally got out if the bathroom at 3:30am and was clingy & needy. It's crazy how this "thing" grabs hold of them and then once it's done it's like it never happened : / This morning my younger son wasn't looking great. He's on his 10th day of amox for strep, but his breath smelled like strep (I know that sounds crazy) and sure enough it was positive, so he was put on a zpack and I realized that is the only abx we haven't tried. The frantic emails I sent last night were the right amount of pestering. The IVIG papers were done today!! DS14 also has
  12. DS 14 is stuck in the bathroom crying hysterically. He's stuck trying to avoid the OCD. He has been there for 8 hours. The last hour he has been crying like crazy. He was in total avoidance of EVERYTHING the past month (hardly going to the bathroom, no showering, teeth brushing). The past week he has been in a much better mood, we believe due to steroids (we went from a burst to a taper). And today he thought of showering after the bathroom and then this crying started. We signed off on doing IVIG 2.5 weeks ago and we still don't have the papers signed and ready to go. What do you do
  13. We first tried a steroid burst in late November. We did it while on Augmentin,biaxin and valtrex. It did nothing. We just tried it again last Saturday and it seemed to help (we are on Doxycycline now). Day 7 (2 days after last dose), things started slipping again. Now DS (14.5) is on a 4 week taper, today is day 3 and so far things seem to be improving a teeny tiny bit each day. T.Anna
  14. Wow!! I am so happy for you. Ok and yes and a bit jealous too. But you've given me hope too. Hugs! T.Anna DS 14.5
  15. Spoke to the doctor and he said yes, but before 5pm. Did make DS a but hyper and giddy, but that is way better than crying. T.Anna
  16. In following the advice on this list, and Dr.T's recommendation, DS will can start a steroid taper today or tomorrow. We had done a steroid burst last week withDoxycycline and it seemed that DS was in much better spirits (still not functioning or leaving the house, but it looked hopeful). My problem, mornings are really tough for DS. Last week we would wake him, get him to eat some bread and take the steroid. Now it's 1 pm and he is stuck in the bathroom crying and I'm realizing the steroid was prob helping more than the Doxycycline and I would like to add the taper today. Is it bad
  17. LLM, you guys have a very valid point, that maybe there was a abx in the mix that was helping and needed more time. I came home from work and DS was very animated. He had taken his probiotics on time and was in a great mood. It's unclear if it's as a result of the steroid burst (today was Day 5) or the Doxycycline. The Doxycycline seemed to be helping a bit last week when DS took a shower (first in 12 days at that point) and went out the next day to visit a friend and even debated staying overnight (crazy since he hadn't slept in his own bed in 2 weeks). Unfortunately, Friday he had caught str
  18. I have given my non PANDAS kid Swiss Kriss, also in a pill and it's herbal...it definitely works. Used to give him only 1 pill, it was plenty (he's a big 12 year old). T.Anna
  19. Well, I became a pest and will talk to the Dr. this evening. How do you find out about MTHFR? Is that also a blood test? It's disturbing that this tailspin coincided when we started to treat the OCD and then PANDAS. I do think that it probably was impacted by the Flu vaccine last year and then again in October (before we knew anything about PANDAS). I'm worried now that the IVIG will be a waste of time/money, what will I do if that fails? How will I know? Last blood test only showed higher #s for Strep, does that mean Myco is still hanging around even if numbers go down? I s
  20. DS (14.5) was diagnosed November 28, 2012. He probably had PANDAS for at least a year if not many years. He was always anxious and rigid in his likes/dislikes. In late October we started working with a CBT specialist a few times a week. At the time DS was praying so much that he would miss classes, showering for 1-2 hours and generally take forever to get anywhere. Working with the CBT therapist helped limit the praying and shortened the shower, but then going to the bathroom got so long that a few times he got stuck in OCD and stayed in the bathroom 8, 10 and even 19 hours. We met with Dr. Tr
  21. We did Valtrex and DS didn't seem to have side effects. It did seem to lower the cox sackie numbers. T.Anna
  22. Dedee, you were on the mark . Dr T prescribed another 10 days of Clindomycin and rifampin (we just finished this dose 4 days ago)....he said sometimes you need to take it longer. Last night he seemed a little better, so maybe the two abx together were working. Dr. T wants us to start a steroid burst today since we are still waiting for IVIG. T.Anna
  23. DS just tested positive with rapid strep test. I have an appointment with the pediatrician for him and my daughter (she also tested positive). If I cannot get him to the doctor what abx should I ask for? He is currently taking Doxycycline and it seemed to improve his avoidance. Tomorrow we were supposed to start 5 days of steroids. Should I push that off?? I will ask the doctor these questions, but I find I learn so much more from real-life experiences here. TIA, T.Anna DS 14.5
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