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Everything posted by T_Anna

  1. <<If you "suck up" and thank them for their concern, seem to welcome the "help" they want to give, their words will likely be less accusing. You have stepped on a bee's hive>> This made me smile. I am the queen of sucking up. I serve as the PTA president and had deliver holiday gifts, fundraise etc. We help organize the dinners and attend. I guess that is the only reason l kept DS enrolled and met with them as often as I did. This same psychologist offered to come once a week and chat with DS, we were so open, we even sent his wife a jewelry armoire for the holiday because we w
  2. Thanks School update. I spoke to someone with inside information who said the school is very committed to calling CPS regardless if he is enrolled or not. The same person said that the school is doing research now instead of before the meeting. On Monday I am bringing in Childhood Interrupted by Beth Maloney and will pursue a time to have a conference call with the author and the school. The strategy is to help them understand the illness better and to state my position clearly. I want to be aggressive without burning bridges as I have two more kids going there. This way any "aggressiv
  3. He's proven in the past that OCD can be stronger than his bowels. He would go only once a week (Sundays) even when he was on laxatives and fiber, he would have cramps, but still not go. The integrative doctor wants to work on gut more aggressively in the voming weeks, maybe that will be the trick. T.Anna
  4. Is it possible to have c-diff and be able to hold it in a few days? DS15 has his most severe OCD in relation to the bathroom. He will only oh once a week and it is surrounded with rituals. He goes to the bathroom after dinner on Sunday evenings. The past two weeks he has been suffering cramps and "not quite making it" to the bathroom on time. Last week it was Saturday afternoon. And the same thing happened last night. Sorry to be gross, but he didn't make it to the bathroom and I had to clean a spot up outside the bathroom door. It was very loose. He had an IVIG on Thursday and Friday
  5. Thanks! We are now getting a white version. Yesterday he ended up taking it and swallowing so who knows
  6. DS is having swallowing these lately (but not Augmentin), might be the coating?? T.Anna
  7. We are at a private school. The only items on the table at the moment are whether or not I officially withdraw his enrollment. I don't think the principal or assistant principal have a clue about cases like BCH. Neither does the school psychologist, but he's an idiot. The reason it is so much easier for BCH is because they are covered by their twisted patients rights and the fact that they already have custody of the child (by being in the hospital). Putting DS in an inpatient facility to placate a private school?? I'll take my chances, thank you. T.Anna
  8. <<And, with a psych and medical doctor on board, you walk in in a position of strength, you tell them what your son needs.>> Sorry, I misunderstood, many apologies. DS15 is not attending school. I enrolled him last June when we received the Cunnigham results and I was optimistic that he would be back in school this past September. Over the next few days, I will see how serious this threat is, if I feel it's real, I will politely withdraw him from school until he is able to return.
  9. This has veered from topic a little. I don't want to debate whether I need to add a psychologist. I do. We thought that this same psychologist was going to help us (he had offered), but now it seems something has changed. I was freaked by the idea that the school psychologist was going to weigh in on my son's treatment protocol. or worse, that someone will show up at my door to take my son. T.Anna
  10. Thanks Ifran. I was going to call a local child advocate/attorney, but figured I'd wait and see if there was one more familiar with PANDAS first. I'm not interested in Rogers. I have heard a number of stories that kids get more functional short term, but then relapse because the AE wasn't dealt with medically. DS is really in a good place besides the bathroom and yes, we have more thank one (Dr.T's first question when this started). We also live in an apartment building so there is a bathroom in the basement for real emergencies, not to mention our next door neighbors who we are close
  11. Nicklemama & PowPow, that's what freaked me out. Hoping Beth Maloney has some good strategies about the most aggressive way to prepare. Thanks for all the support!! T.Anna
  12. Wow, flmom. He sounds very similar to my DS15 (well, except for leaving the house), with the food and pill along issues. We got to a point last year where I paid him to take the pills. Thankfully, I don't have to do that anymore, it adds up. T.Anna
  13. Tuition: yes, for all three. However it's reduced so I didn't want to argue about reducing it by a third. T.Anna
  14. Clarification: He called CPS as a consult on a "hypothetical" case. Yes, the school has called, sent gifts, etc. encouraged kids to call/email/text. This was a new approach. DH and I have analyzed the meeting. We think that maybe it was meant as a push so that we add a psychologist. When I countered the whole mention of CPS it seemed like they hadn't "though it through" and were clueless. Even if it was meant in the kindest way, I feel too uneasy that they could really put a well meant call to CPS and we will be in real trouble. Thanks for all the Beth Maloney recommendation
  15. DH and I had a meeting with DS's HS this morning. It was called by the school and it included the Principal, Assistant Principal and school psychologist. Background: This is a private school I serve as the PTA president DS has not set foot in the school since mid. January when the flare hit and he is still registered (as are two sibs). We have just started getting paperwork in order for HB teaching The principal opened, that the school wanted to make sure that they were being responsible and fulfilling their obligations to us, to DS and to the State. He passed it to the psychologi
  16. Thanks Airial95, what's left : )? I will call ped and ask to bring him again if he's still feeling bad today. He's still sleeping. T.Anna
  17. My non-PANDAS DS13 tested + for strep on the rapid test. He was on Azithromycin for a week and then I re-tested him and it was clear (ish-I wasn't 100% sure). Friday night he was feeling I'll again and sure enough more strep. He has been in 500mg Azithromycin since Friday and today he came home early because if fatigue and generally not feeling well. He keeps thinking he has a fever, but nothing shows up. He fell asleep at 5:30pm and woke at 8 full of sweat (his room wasn't warm). Any ideas? I guess I'll have to take him in, but I figure this is the best place to ask Strep questions.
  18. Good luck. It's hard with older kids, but hang in there. T.Anna
  19. Thanks QAnnie47. I will take this a step further and say that it has also changed my two non PANDAS kids. They have such compassion for their brother. I had to go out and my pandas son was afraid to be alone while stuck in the bathroom. On his own, his younger brother lay on the floor in the hall and talked to his brother through the door until I got back. That's something I wouldn't know how to teach in a million years. Thanks again!! T.Anna
  20. Thanks JoyBop. Not sure I'm quite "all that" but it's something to aspire to. Do you think there is anything to be gained by calling Dr.Swedo? I emailed last year and I got a response that my son wasn't a candidate for their study. I guess I can try. Thanks again, T.Anna
  21. <<Have you ever thought about dr. Najjar?>> Yes, we met with Dr.Najjar on July 24, 2013. We did not get the same reception as others. At the time we were hoping for plasmapheresis which we ended up doing at Maimonides on July 30th. At this point, I'm not sure what he could do, since as far as I can tell, he doesn't treat with immune suppressants (CellCept, etc). I think I will try a rheumatologist, I have heard that might be a more likely route. I loved your poetic response, thanks.
  22. On January 24th, it will be one year since DS15 voluntarily left he house, bathed, changed his clothes, functioned like a teen. Now he gets trapped in the bathroom whenever he has a BM. Trapped by OCD and rituals he's too weak tired to fight. He cries, he wants to get out. It once took him 4 hours, then 12, then 24, then 32 and now the past three weeks it has been 48hrs. I asked him why it has changed so drastically? He said because before he believed he could be cured. He thanks me for talking to him while he's in there. He apologizes to the whole family for ruining things for them.
  23. Heard that this has additional benefits, not just anti-fungal/mold. Experiences? Thanks in advance, T.Anna
  24. I was reading about this on Facebook and it looked interesting. I'm not sure how it's supposed to help and whether it does help. Thoughts? Experiences? T.Anna
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