Bcox118

Have had way too many of those days over the past year or so. Sounds just like my 8 yr old dd. Clothing issues are terrible, and has stopped up our toilet countless times over the past two months. Tics are actually the least of our concerns . . . The odd and OCD far more troubling to all of us. Going to dr b in mid December. Praying it's not too late to help her. I've cried in front of her before - good and bad. Part of me feels like it's been the only time she really snaps out of it to see I'm aching for her (usually too combative, wound up, agitated to see that) another part of me never want her to us us wavering because I'm afraid it will scare her. Always want her to fell like we're in control, have the answers, and know how to get her well, even though we tell her to be patient. So, I totally get it. No roadmaps here - not something any of us ever thought we'd be dealing with. You do the best you can each day I guess. In the end, hopefully they'll look back and realize we at least cared enough to cry with them.

Hi, Have appt w dr b on dec 12. Woman named Joanne was very kind, but said he will not give orders for lab work until she's seen by him first. Know I've read on here that others have gotten lab work prior to first visit. Thoughts? Dd8 in bad shape w tics, OCD, odd. Were three and a half hours away and have a 6 and 3 year old at home. Both missing work to go, and he doesn't take Harvard pilgrim HMO. Just want to make the most of the appointment and not waste any more time or dollars trying to relieve her symptoms. Thanks.

Hi, Have appt w dr b on dec 12. Woman named Joanne was very kind, but said he will not give orders for lab work until she's seen by him first. Know I've read on here that others have gotten lab work prior to first visit. Thoughts? Dd8 in bad shape w tics, OCD, odd. Were three and a half hours away and have a 6 and 3 year old at home. Both missing work to go, and he doesn't take Harvard pilgrim HMO. Just want to make the most of the appointment and not waste any more time or dollars trying to relieve her symptoms. Thanks.

Hi, Totally frsutrated with neuros and psychs in the Boston area (been through Children's and MGH), and ,making appointment today to go see Dr. B. Have appointment scheduled with Dr Geller at MGH, but will be $2500 out of pocket. Going to cancel and give Dr B a try first. Just curious as to what to expect. My dd is 8, and has been diagnoes with TOurette's and OCD. SSRI's and CBT did nothing for her. Had very clear cycles of behavior for about 20 months from age 5-7. Would be the perfect child for about three months, then she'd literally change overnight. On her 7th birthday in May 2010, she had a terrible OCD flare up, culminating in a breakdwon that night in which she told me she was "burning up." Half of her class had been out with strep the month before, and she was put on antibiotics as well (rapid strep came back normal, but Dr had already put her on abx becasue said her throat was "classic strep." She's never quite recovered from that epdisode - tics developed about 6 weeks later, OCD grew increasingly debilitating. Mainly, she has horrible just right OCD. Wears one of 2 t-shirts, same pair of leggings, no socks, tantrums over her hair, can take an hour to get her blankets "even" at bedtime, was picking her skin until she bled for about 2 months last spring because she "had to see" her blood (now has 5 scars on hands and feet,) counting to patterns of 8, terrible rages, ODD, cursing(the F word is her favorite - awesome when you have a 6 and 3 yr old in the house.)She did have some better periods over the past 18 months (particularly last spring and then again this summer), but hasn't made it backt o her normal self over the last 18 months. Not sure it's PANDAS, but nothing has helped her. Will be a three hour drive to CT, and likely will have to pay out of pocket. More than willing to do it, but just wondering what to expect, and if anyone has a child who has been there with a history similar to ours. If so, curious as to tests Dr B ran and treatments he's recommended.

Hi Amy, We too went to children's last yr for my dd. Diagnosed w tourettes and OCD, but he mentioned he thought it could be pandas. It was dr T, who has since left. We've been doing celexa and did cbt, but no help and she's worse than ever. Have appt with dr geller at mass gen in a month, but will be 2500$ out of pocket. Thinking of canceling now and going to dr B. Only thing is, they're doing a study at mass gen right now trying low dose abx for kids w OCD to help with therapy (not to treat pandas). Curious about your sons symptoms and onset.

Hi, My 8-year-old daughter was formally diagnosed with Tourette's and OCD last March by two Neuros (one at Children's, one at MGH,) though we know for about five months previous that we'd get those diagnoses. History is a bit complicated - will try to keep it as brief as possible: Totally normal child - absolutey no issues until the age of 5, when she started developing what we thought were sensory issues, particularly around clothing and some behavioral / mood changes. I should mention, my 6 year old has mild CP and has had sensory issues since birth. Couldn't understand how my "normal" child could develop clothing aversions at age 5, and couldn't figure out why she was "acting out" over the simplest things out of no where. She would curl up in a corner and tell me she was "stupid" and "an idiot" and no one liked her, because "why would they, I'm terrible?" Also said she felt "black" in her heart, and wished she could disappear. This all came out somehwat gradually over the course of a month or two, then seemed to abate. Over the next 18-24 months, she developed these very noticable cycles:she would be her amazing self for 8-12 weeks, then would literally wake up one day changed. I would call my mother near tears telling her the other Ella had come back. Actually took us about 6-8 months to even noticed the pattern (hindsight is 20/20.) Went on like this until her 7th birthday in May of 2010. She'd been in a fantastic period since March, then literally melted down the day of her party. None of the plates, napkins, decorations were "right", she fought with her cousins, totally irrational and angry about everything, then broke down screaming and sobbing that night that she was "burning up." I should mention, we were all very ill about 5 weeks before, but this was later, and she had no fever, no sickness that we were aware of, but she changed from that day. Clothing issues exacerbated, as did social issues at school and her irrational/angry behavior at home. She also started having horrendous night terrors. Went on this way until July / Aug of 2010 when the tics started. Mainly eye-rolling, nose scrunching. By September, she'd added these odd movements with her hands and arms - we have her on video laying on them to keep them still. She went down to one pair of underwear, one shirt, one pair of sweats and flip flops. Had to quit soccer b/c could not wear the cleats and socks, didn't go trick or treating b/c she couldn't get into a costume, missed birthday parties and school functions. By Oct of 2010, she'd gotten so bad that it took us an hour to get her out of the bath one night b/c we weren't holding towel "right." Went through a whole winter in the same outfit, wearing uggs with no socks(she did gym in them!) Started her on Celexa in late October of 2010, but no improvement by May of 2011. In late May, put her on something called "Empower Plus" and weaned her off Celexa. She had a great period this summer for about 3 weeks (even stopped ticcing for 6 weeks!), then backslid in August a bit. About one month ago, she went off the rails again. Now, the OCD is worse than ever - won't use the same toothbrush if there's anything on it, can take 2 hours to get her out of the house in the AM becasue her hair "isn't right," cursing constantly, saying she can't help it, throwing, tantruming, beating on her younger brothers and me and my husband. Told me she's tired of counting all the time and having to do everything in patterns of 8. She's been sleeping in our bed for over a year now (which I wouldn't even care about, except it can take forever to get the blankets "even" and her pillows right until she can go to sleep.)She's had bad times before, but all even more heightened now. Have an appointment with Dr Gellar at MGH in November, but will be $2,500 out of pocket. Have already spent so much money on intergrative psychs, CBT therapists, neuros, psychopharms, the Empower pills, etc. etc. Have no idea if she has PANDAS - she can keep it together somewhat at school and in public - can PANDAS kids do that? Just not sure if I want to go through the MGH DR for all that money, just to be back to square one. Wondering if I should be going to Dr B In Darien? Did any of you have kids whos OCD came on more gradually and focused on sensory-type issues? There was a massive outbreak of strep in her class in March of 2010 (brought her to dr when she got sick at the same time who gave her abx b/c said her throat was "classic" strep, though think the test came back negative) Had ear infections at 4 and 5. Also has a cousin she sees all the time who we think might be a strep carrier. Any advice is welcome - - Dr at Childrens had mentioned PANDAS and said it could be (he's a supposed expert), but he didn't believe in treating with prophylactic abx and wanted us to try the Celexa and therapy. He's since moved. Just need to know if I'm crazy for consdering this. Sorry it's so long and not very well-written - daughter is screaming at my husband from the other room! Thanks