astridrobi

I'm in the northwest corner, but will travel anywhere in the northeast, really. Is "Oxford" insurance? astrid

WE have an appointment with Dr. Bouboulis for September 2. That seems so very far away, and we are so very desperate for help. Sigh. (sob) I'll keep calling back for a cancellation and make anything work. She saw her original allergist who did the bloodwork in 8th grade; he was very open and receptive to dealing with it, and is sending her for more bloodwork including a full thyroid, lyme, lupus, etc. We'll see how that turns out. Her anxiety seems mainly to be in school, and now the school wants to put her on a 504 plan. I'm wondering about just pulling her out to homeschool her again, but she doesn't seem to want that. She's in the band and choir, as well as the swim team, and it's hard for her to give up the things that make her feel good about herself. In the meantime, I guess we'll just keep on keepin' on. It's so very difficult, but I don't need to tell any of you that. I feel if we could just get a handle on this hair pulling we'd be in better shape. Thanks for listening astrid

Right, I understand the whole "you get what you pay for" philosophy, but we also need a roof over our heads. ;-) I JUST hit on the NAC study for trich yesterday and stopped at the health food store last night. She took a dose last night so here's hoping it'll be helpful. Travel isn't too much of an issue, but would love some Hartford area resources if you wouldn't mind sharing some names. I'm feeling so much more confident and a tiny bit of relief since finding this forum! astrid

So BOTH Dr. O'Hara and Dr. B? Do they specialize differently? astrid

We have good insurance; Dr. O'Hara doesn't take insurance? What exactly are we talking about in terms of dollar amounts for a visit to her? We're already paying out of pocket for dd's hypnotherapist to get a handle on the trich. Not sure we can swing another giant chunk of money. :-/ Dr. Bouboulis--- off to google! Thanks, astrid

Thank you all so much for your replies! We live in Connecticut, and my gut is just telling me that this is not just anxiety and OCD. I'm concerned though that she doesn't have a definitive list of positive strep tests with all the illnesses I've listed. The mycoplasmic pneumonia was diagnosed on New Year's Day last year when our ped met us at the office at 6 pm and said, "I think it's mycplasmic pneumonia..... here are two prescriptions. Call me tomorrow and we'll decide whether to hospitalize her based on her condition tomorrow." He used the term "mycplasmic pneumonia." But never mentioned a test for it? Would she still have markers a year later? We have an appointment to go back and see the rheumatologist/allergist on Thursdays just because I want to have a conversation with him to go over his findings from a year ago, which at the time just didn't seem too earth-shattering because by the time the test results came back, her hives had kind of disappeared. Now I"m going back in time in my mind and wondering.... Would love any CT resources you might have! astrid

Hi there, I'm new here, and would like some input into my dd's history; I'm wondering whether it's worth pursuing a PANDAS diagnosis, and whether there's enough "evidence" that points to PANDAS. In a nutshell: Dd is 15 and a sophomore in high school. In winter of 2nd grade, she had a routine head cold/sore throat virus. Soon after, she developed cold urticaria. (Hives brought on by cold air.) Ped. said it was just a strange autoimmune reaction to the cold virus, and was most likely transient. It was. But our previously happy, bright, normally-developing daughter developed anxiety and trichotillomania (hair pulling.) She said she was anxious in school when kids were behaving badly and not listening to the teacher. In an effort to curb the anxiety and the trich, we pulled her out to homeschool her, with the plan that she'd return school for high school in our small, semi-private high school. The anxiety and trich stopped completely. In her 8th grade year, the hives came back following a sore throat and cold virus. They would come and go, and we saw an allergist. Full battery of allergy testing revealed no allergies or sensitivities whatsoever, so the dr. did some sort of blood test (I don't have the name of it here.....) to test for an autoimmune issue. It came back positive for some sort of antibodies (again, no access to the report here at work) and the hives seemed to resolve over time. The next year was last year, 9th grade. Dd was a freshman in high school and was doing well- happy, no anxiety, successful. Over Christmas break of that year, she had mycoplasmic pneumonia. Hot on heels of that, her anxiety and trich came back with a vengeance. We've been battling them ever since. Celexa helped with the anxiety for a while, but now she's up to 40 mg. and it's not seeming to be very effective. Her trich is pretty out of control, and in looking at list of PANDAS symptoms, she's got the following: Tics or other abnormal movements YES: TRICH, AND A HOARSE, DRY COUGH THAT SEEMS TO HAVE NO CAUSE AND/OR RESPONSE TO TREATMENT Severe separation anxiety, Generalized anxiety YES: SEPARATION ANXIETY FROM HER FATHER AND I, AND GENERAL ANXIETY. Irritability, Emotional lability, Aggression, Personality Changes YES, STRESSED AND ANXIOUS, PRONE TO CRYING ADHD, Inability to concentrate YES-- INABILITY TO FOCUS IN SCHOOL, ON HOMEWORK. NO HISTORY OF ADHD OR SCHOOL/LEARNING DISABILITIES Sensory sensitivities YES: LOUD NOISES. EASILY STARTLED. Deterioration in learning abilities and school performance YES-- GRADES HAVE TANKED. LOTS OF TEST ANXIETY. Developmental and age regression (inc. Deterioration in handwriting) YES: HANDWRITING HAS GOTTEN TERRIBLE, BUT IT HASN'T BEEN A BATTLE I'VE CHOSEN TO PICK. HAD NO IDEA IT COULD BE A SYMPTOM UNTIL FINDING PANDAS. Sleep and night time difficulties YES: TROUBLE FALLING ASLEEP. Urinary Frequency or Daytime or night-time secondary enuresis NO. If you've read this far, I thank you. I'm wondering if I should push my ped. or go back to the rheumatologist/allergist. I did bring the subject up over the phone with our ped. whose exact words were, "I'm not even going to have that conversation." HUH? So anyway, I'd love a yea/nay opinion on whether to push. Thanks tons, astrid

Hello everyone, I'm new here and stumbled upon this forum in my search for answers regarding my daughter's sudden onset anxiety and OCD. Like all of you, I'm sure, when your child started getting ill, I'm desperate for answers and seem to be hitting roadblocks with health care providers at every turn. I'd never heard of PANDAS until last week, and the more I look into it the more I think it might be somehow related to what's happening with my dd, age 15. Once I'm fully approved to post here, I'd like to list the chronology and her symptoms and see if this educated community has an opinion as to whether or not it could be PANDAS. When I broached the subject with my pediatrician his exact words were, "I'm not even going to have a conversation about that." Not exactly what I wanted to hear. In the meantime, I'll keep reading here, and see if I can piece together a connection between dd's sudden anxiety and trichotillomania and her medical history. So glad I stumbled on this community! Astrid