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Everything posted by T_Anna

  1. Thanks. Went to see highly recommended psychiatrist in Manhattan (psychiatrist and pediatrician) and I was surprised with how ignorant he was regarding PANDAS. I really need a psych who has treated PANDAS kids before. I left him the Saving Sammy book, but as smart as experienced as he seems, I have no patience for being any ones test patient. I will look into how far Redbank is, at this point I'll travel 45 min.- 1 hour if it's not every week. He has no joint pains and the lethargy may just be how his body copes with meds/illness. He did test positive for mycolplasma so that may explain wh
  2. Just did a rapid strep test on his sister who was complaining that her stomach was hurting. She tested positive. Now need him to wake up so I can take him to pediatrician. T.anna
  3. DS 14.5 is on day 4 of Doxycycline and we started to see some encouraging signs (he showered, slept in his own bed, went out to see a friend). Last night he came home feeling anxious and depressed. He said that his throat is very sore. Any ideas of what is going on? He had the flu vaccine and doesn't have fever, is it strep? T.anna
  4. We tested for Lyme (with Dr.T which may not be the right test), and it was negative. We are scheduled to try a steroid burst on Saturday, he did one before (late November), but it only seemed to make him sad last time. I have an appointment with a psychiatrist tonight to see if we should work with him on that end. I was thinking that maybe the sleeping a lot might be associated with depression/anxiety?? I read somewhere that depression in teens looks different than in adults though??! T.Anna DS 14.5
  5. Last night he decided to shower and sleep in his own bed...and followed through. It wasn't easy and I'm sure he did rituals in the shower, but it was 12 days of nothing, I even heard him do some exposure work in the bathroom.

    Maybe the Doxy is working??

    T.Anna - typing with her fingers crossed!

    DS 14.5

  6. Last night he decided to shower and sleep in his own bed...and followed through. It wasn't easy and I'm sure he did rituals in the shower, but it was 12 days of nothing, I even heard him do some exposure work in the bathroom. Maybe the Doxy is working?? T.Anna - typing with her fingers crossed! DS 14.5
  7. Looking to hear encouraging IVIG experiences. Since November we have tried: Augmentin XR, Biaxin, Valtrex, Clindomycin, Rifampin and now Doxycyclomin. It looks like IVIG is the next step. What was your experience with IVIG? If it worked, how long before you saw improvements? What if it didn't work, did you try IVIG again? Pex? Something else? DS 14.5 is in total avoidance mode and doesn't shower or go to school in the almost 3 weeks. When he is up (3pm to 2am) then he is nice and eats, talks. Thanks in advance, T.Anna
  8. Interesting! When I mentioned to Dr.T that DS had received flu vaccine 10/26 right before things got very bad, he said it was "oh, and it probably had H1N1 too." T.Anna
  9. DS was on it for 4 days with Cilndomyacin (for strep). Didn't see any improvement, except he had beautiful skin (he's 14.5 and not showering). Did make his pee orange. We are now on Doxyclomin. T.Anna
  10. Anyone have a good article that helps explain PANDAS to you kid's friends? DS 14.5 started telling friends, but has a difficult time explaining it to his friends (also done through texts which makes it harder). Thanks in advance, T.Anna
  11. Ok, we went to Dr.T and we are trying Doxcyclomin while we wait for IVIG. Anyone try that? DS was in a much better mood yesterday (still not over avoidance), I think it was because he finally told his best friend that he has PANDAS. T.Anna DS 14.5
  12. Thanks for the responses. We went to Dr.T and we will try Doxycycline while we wait for IVIG and add steroid again on Day 5. It's a little daunting after we all we tried Augmentin XR, Biaxin, Valtrex, prednisone that nothing really worked....except Advil! Last night he had a complete breakdown after I suggested that he shower and he also complained of if a blinding headache. He took 3 advils and then two more (his regular advils at night) and was totally human again in 20 minutes (no crying, head banging, etc), even laughing/funny. Dr.T said that the fact that the Advil clearly works
  13. We tried the steroid burst back in November. Not sure it improved things, but made him sad. Will go over my notes this morning and double check. Thanks, T.Anna
  14. DS 14.5 may be a candidate for IVIG. We are meeting today with Dr.T. How quickly can they schedule IVig? Is the patient kept in the hospital? What needs to be done prior? Anything else I should ask? Thanks in advance, T.Anna
  15. DS 14.5 has been on Clindomycin and Rifampin for just under 10 days to deal with rising strep #s. Since starting the meds last Saturday, he has ceased doing EVERYTHING...including all activities associated with OCD. His OCD was worst with the shower, toilet, praying, and clean clothes. He now sleeps on the couch, hasn't showered in 10 days, hasn't changed his clothes and only goes to the bathroom (BM) every few days. Has the medecine made things worse? We have an appt. with Dr.T today, he thinks it may be time for IVIG. I know many of you have done this, what questions should I ask
  16. <<L-lysine is what did the trick for her.>> What is L-lysine? a prescription or OTC? Waiting for results. He seems more awake today, but still wont shower or go to the bathroom. Says he wants his life back, but wont do anything but play on his phone : ( I guess I should be happy that he isn't sleeping anymore, and he ate breakfast which is one more meal than the past 5 days. Praying that the Clindomycin does the trick with the strep #s!!! T.Anna DS 14.5
  17. We are looking for a psychiatrist and a new therapist. Any leads? You can PM me if that's easier. Thanks, T.Anna DS 14.5
  18. We did a flu shot on October 26 and DS was diagnosed November 20. I think (though I'm not 100% sure) that the flu shot sent us into the flare that we are still trying to dig out of. Don't introduce new anti bodies, if this is how things started for us, it's not worth the protection : ( T.Anna DS 14.5
  19. Went to the pediatrician and he took bloods and will test for mono. It was at least nice that they accepted all the Pandas diagnoses and no one bent an eyebrow. Hopefully, we'll hear something tomorrow. T.Anna DS 14.5
  20. Reasons given to avoid certain foods: Yogurt - bacteria Honey - bacteria Sushi - bacteria Tap Water - parasite? I'm beginning to get disillusioned with everything. T.Anna
  21. I sound like a broken record at this point, but... DS 14.5 has had trouble waking up off and on since mid December. Saturday we got his blood results back (taken January 2) and his ASO and anti-DNase B have risen significantly. He started Clindomycin on Saturday and will add Rifampin on Friday morning. He has been sleeping almost all day since Saturday (and he missed school Thursday and Friday too). Wew wake him for meds and is up for a few hours at night. He eats dinner, watches his iPhone, talks to his brother and then cannot fall asleep easily. I called Dr.T and he said this isn't a norm
  22. Just saw this now. Thanks so much. I've been checking on my phone and cannot find PMs on it. Now I went to full site. DS on new abx and still sleeping all the time. This really does test what it means to be a parent : /

  23. We started working with a therapist in November, when DS's OCD started to really flare up. She had told us that DS must not eat anything with bacteria which included: Yogurt Honey Sushi Tap Water Is anyone else here avoiding these things? We have become disillusioned with her since she said the CBT wasn't working because DS was stubborn and a perfectionist. When asked if it could be that his titers were still high? Her answer was that his numbers were prob. going down. Three days later his blood results show that his titers were higher than in November! DS begging for s
  24. As I posted Saturday. DS's strep numbers only went up since his first blood test in November. He is now on Clondomycin and then will add refampin on Friday. He is sleeping a ton and the crying is back a bit like the last time he was on abx and anti-virals. Has anyone had success in eradicating Strep with Clindomycin/refampin combo? If this doesn't work is Ivig still an option?? TIA, T.Anna
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