staeprice

My DD got huge anxiety/fear about the sound of the bathtub draining in kindergarten. For months she would freak out if we tried to drain the tub with the bathroom door open. The phase eventually went away and then during a different PANDAS episode about a year later the fear came back. She also got scared of "ghosts" in the shower, and one time she thought wet grass was bugs crawling on her and she wouldn't touch the grass for over a month. We have found our daughter has irrational fears linked with her OCD. They are extremely worse during and following an episode then we go back to our normal every day fears of clothing... I'm hoping this will decrease with age. She is also on Prozac which I think may be helping but we have not had another episode since she went on it so time will tell I suppose. I can definitely tell you that you are NOT the only one. And it's so hard when our kids convince themselves of these irrational fears. You can reassure over and over and try to talk them down from the ledge but sometimes it just takes time.... We have also been using a great workbook for kids called "What to do When Your Brain Gets Stuck" and my daughter has been using the strategies for little blips that come along.

Thanks everyone for your input. We made the decision to take her off while we still have a back-up supply at the ready and March has historically been a good time for us. Pumping the probiotics and for the last three days we have seen positive changes in her mood and activity level. I think we are in a place where we need to try this and see what happens. If we go backwards we may end up having better information diagnostically to understand what is truly going on.

I'm in limbo... My 7-year-old DD has been on antibiotics for 7 months now. Her last episode and dx of PANDAS was in May 2010. She is on Augmentin XR (1/2 pill 2x/day), prozac, and lamictal. This has been her best school year in her three years of school. She is not 100%, still has underlying OCD with clothing pretty much all the time, not getting better but not getting worse. She has had two blips in the last two months following viruses (tested negative for strep). I had her titers redone in February during one of her blips and they were in the normal range (last May they were extremely high). So... where do we go from here? I get nervous thinking about yeast/gut/tolerance of the antibiotics for long time use. I kind of think she needs a break but there is the "what if?" factor... I'd like to hear what others do with their antibiotics use. Full-timers? Only certain times of year? Periodic use with exacerbations? How long is too long??

I'm so glad I'm not the only one who hears these things!! My all time favorite was from a "behavioral pediatrician" pre-PANDAS dx: First plan: "Leave her in her room until she agrees to put on her clothes. She needs to know who is the boss" After one week: "You might have to duct-tape her clothes on and make her go to school" (no I am NOT making this up - we did not do this of course). After two weeks following "the plan" and I tell her its not working she tells me "you obviously need to have some serious hand-holding and I'll have to unearth someone to help you with this". Needless to say we never saw her again...

We really like Dr Shafrir in Baltimore and he was referred through our insurance (Kaiser P) and they don't reimburse anything. Dr S doesn't have a lot of PANDAS experience which he said right from the start but he is wonderful! We didn't even know about PANDAS before him and having a Dx was huge for us. I wanted a specialist opinion and we went o see Dr L this Fall and paid a whole lot of out-of-pocket money and I was not impressed (sorry Dr L followers). We waited 3 hours for our first visit. She never returned an email and phone call. And, the second time we went it was like she didn't even remember who we were. Maybe okay if insurance paid for it but not for what we paid! Dr S on the other hand personally called me on the phone more than once and had genuine concern for my DD. The good news is that Dr L said she would work with Dr S so our insurance could pay for it which I thought was very nice. I would definitely recommend Dr Shafrir.

Hello, I am new here. My dd is 7 and was recently dx with PANDAS/OCD. Her current treatment plan is counseling, prozac, lamictal, and pencillin (daily for one year is the plan w/probiotics). She missed a lot of school this past year after two significant episodes in November and May that caused her to miss a month or more of school each time. She has a 504 plan from before the PANDAS dx for what we thought were sensory and anxiety issues. Now our psychiatrist and new counselor have brought up an IEP and schooling options for Fall. Right now she is supposed to attend regular second grade and the school will have a meeting to determine her need for home and hospital. My dd's OCD issues are almost always clothing related so she can't go to school if she is not dressed (naked or in a bathing suit). However, her school-anxiety keeps increasing because she knows she is different from the other kids and they are starting to talk (not to much teasing yet..). For instance, she might wear the same outfit every day for two months. I guess what I would like to know is if others have had to do home-bound services during PANDAS episodes and how this has impacted their schooling and friendships upon return to school. Does anyone have IEP services for "emotional disability" and what kinds of services are you finding beneficial? The older my daughter gets and the more PANDAS episodes we have had (4 in the last two years) the harder it is for her and the more internalized her problems get. If any one is experiencing the same I would love to get your feedback and ideas. Thanks, Becky