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Valerie2013

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  1. Wow. Really interesting article. Thanks for sharing. We thought our daughter's symptoms became worse after I (mistakenly, I now realize) tried to reintroduce eggs into her diet.
  2. Wow! Thank you all so much for the wonderful information. I asked the doctors at Nichols Cottage several times to run some of these additional tests and was told that there was no point as PANDAS has already been ruled out (and the reason given was that we have a family history of anxiety? I don't even remember my husband or I saying that we had a family history of anxiety. Particularly because we don't.... odd. I will try to contact Dr. Swedo again. When we first contacted NIMH we didn't realize how life-threatening the situation was. Again, I cannot thank you all enough. Sorry it has taken me so long to reply. I have been busy advocating for my daughter and trying to make sure she is getting the care that she needs. Do I need to bring her to another doctor to run these tests (other than the ones where specific labs were given)? Dumb question and I know I should know the answer, but what is a top LLMD? Thanks again, Valerie
  3. My 10yo daughter is currently in-patient at Nichols Cottage in White Plains and not getting much help at all with her OCD. Does anyone know of a good CBT treatment nearby either in-patient or extensive (maybe an outpatient day program?)? Thanks, Valerie
  4. Thanks so much for everything. She has seen a rheumatologist who ruled out lupus. We are close to White Plains (about 20 min away). She is on the waiting list (3-4 week wait) of Cognitive Behavioral Specialists of Westchester. We did contact the NIMH (earlier, before she stopped refusing to eat/drink) and they said she wasn't a candidate for their study because she has had some OCD symptoms in the past. She had some for a few months when she was 8 (nowhere NEAR as severe as now) and even more moderate ones when she was 5. In the past we didn't realize that her symptoms may have been OCD, it's only been when we got hit over the head with the symptoms this time that her past behavior became suspicious of OCD. 5 year olds can do lots of unusual things! Only in hindsight does it look like her symptoms may have been OCD instead of just wanting things done in particular ways. She's also always been very strong-willed, so it can be hard to tease out where she has been just opinionated or where it may have been OCD. They did add Zoloft (25mg) yesterday. They started with the Abilify to tone down her rage & fear which they increased to 5mg yesterday. She is on 24 hour surveillance and being monitored very closely for any signs of side effects of the drugs. I cannot tell you how much I hate putting those drugs into her, but I also couldn't let her not eat/drink/sleep (she could sleep when she collapsed, but it was only for a few hours each night). I have been trying to contact a PANDAS/PANS doctor and even have an appointment for her with Dr. Bouboulis in October (I made this appointment a few weeks ago - it was the best I could do), but we couldn't wait anymore once she stopped eating and drinking. I'll have to look up by what you mean by change of diet. We have put her on a dairy-free (actually casein-free), gluten-free diet. She also needs to avoid eggs & strawberries. We also keep her off of artificial colors/flavors & preservatives as well as anything you don't know exactly what it is such as 'natural flavors'. She's been on this diet for 2 years, but, suspiciously, started going off it a bit around January of this year.
  5. My daughter was hospitalized last Wednesday night (1 AM Thursday) at Nichols Cottage (part of NY Columbia Presbyterian Hospital). I’ve been lurking here and had someone post on my behalf to this group, but it’s been sporadic as we’ve been dealing with a crisis situation with her (she’s 10) and our whole family. She went from a functioning 10 yo in April to having major rages to having OCD symptoms 24/7, to having OCD plus rages and anxiety attacks. Ultimately, the OCD was preventing her from eating, drinking or sleeping despite our family’s best efforts, so we don’t think we had any choice but to hospitalize her. She has taken 2mg Abilify starting Friday through today. This is the first time she has taken ANY meds. Her OCD has latched onto me where she “needs” to do rituals with me everytime she talks to or sees me. As soon as I say I won’t participate in OCD’s rituals she starts going into a panic attack. I haven’t seen her at all since Friday and have only talked to her a couple minutes on the phone Saturday & Sunday (which totally consisted of her trying to get me to do a ritual with her). Are there blood tests we should be requesting (Lyme, Strep, bartonella, etc.)? She has tested negative on a blood test for Strep & Lyme, and had a high ANA titer. Any help on what I can do to help her (especially since I can’t see her or talk to her – I need to eventually get back in her life)? We were so close before this started. Thanks, Valerie
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