memom

No OCD. His sister severe OCD, I recognize that with my eyes closed and hands tied behind my back. Personality change, episodes of dilated pupils (no drugs), poor concentration with acedemics, difficulty getting out of his own way to get things done, room disorganized like his brain (opposite to his normal). Ellie

I may be loosing perspective here but.....Is is possible that a sibling of a Pandas kid also display behavior including difficulty concentrating, difficulty ordering thoughts, anger/rage, dilated pupils, depression....and it in fact is also Pandas? Has had documented strep in the past. All started with complete behavior change 4 years ago that has progressively worsened despite mental health care (was given the diagnosis of clinical depression though counselling and multiple med tries fell flat). This is a kid that until 17 was a star athlete, straight A student with honor classes and is now unable to get through one college class. Long hx of "stomach aches" dating back to 3rd grade but never interfered with school performance. No OCD or tics that I have seen. I am thinking he has been misdiagnosed. I do think he is depressed, but I think that is a symptom of his difficulties with fogginess and change in mental thinking and reasoning ability vs the cause. I am considering getting him Cunningham'd though know that may be confusing with not classic symptoms. Those who have gotten the ADD diagnosis, how did that happen? Psych testing, or learning disability testing? Thanks, Think I'm going crazy with Pandas kid not yet responding to steriods/abx after 6 days, and this kid going down the tubes. Ellie

Thanks Faith, I will. Ellie

Absolutely. I thought I'd give it a few weeks as she is on 50mg Prednisone daily and 1000 mg Augmentin (500 twice daily at 125lbs) along with SSRI's (was up to 250mg Zoloft daily with not much effect, now weaning). If the response is less than great, I will consider increasing to 875-1000mg twice daily for a few weeks to a month. I have already considered PEX and IVIG but wanted to see what a month of steriods and antibiotics would give us first. No one has ever placed this poor kid on antibiotics as part of her treatment except to treat infections (and I never saw much of an improvement in her symptoms with 10 days of Amoxicillin). We are open to PEX or IVIG if needed. I need to get her back to normal so she might be able to go to college next year. Her cognitive functioning is just returning but never fast enough. Not a lot of resources here in Maine. Thank goodness for this board and all your knowledge. You've helped me have the courage and anger to get the help dd needs. Ellie

Sorry Faith, no. Today is my first attempt at this posting thing. I'm slow with all this technology. Ellie

Symptoms were fairly acute but he want misdiagnosed as OCD/tourettes (treated with psych. meds, no abs) for a year. Though this is my first time posting, I have been reading daily since July. I feel a need to chime in. I agree with both EAmom and Buster concerning long term PANDAS that is either untreated or undertreated. My dd is now 17yo. I think she may be the oldest of any on this forum. She presents much like Buster and EAmom's daughter, severe OCD with mild chorea (though no anorexia but definate food compulsions). In hindsight she has most likely been dealing with her symptoms to a milder degree beginning years ago. She has had a series of repeated strep infections over the past few years where her symptoms exploded with a baseline symptom rise (no such thing as good days for the past 1.5 years. Much like Sammy, every day was a struggle). Despite elevated titers, we were (like Beth Mahoney) directed down the Mental Health arm of healthcare. We completely lost her Junior year in High School, unable to read and write. She went from an A/B student to unable to use her mind for learning. She was much like Sammy but no tics. When in June she got another strep infection and her symptoms got even worse, I decided to go against our Pediatrician advice and changed course and went down the Pandas pathway. I have been working with Dr Latimer who advised us to get her tonsils out given continued strep despite her age. We also got Cunningham testing with Cam K levels of 156 3 months after her last infection, and elevated levels of all the other antibodies. Her surgery was in mid August where they found an abscessed tonsil. By 10 days after surgery, dd stated she felt like her brain was less swollen and the fog was lifting. She was able to read without repeating, and write without erasing. Much like others on this forum, we have seen slow up and down improvement with the good days being better than I've seen in years with clearing of thought and eyes. She is in school and keeping up. We started her month of steriods 3 days ago and she has been started on Augmentin 500 bid for the next year. I have hesitated to post as so many have been holding up puberty as when things might magically get better. Not for us. In fact, the past 2 years from 15-17 have been when her symptoms were so bad that she couldn't keep a lid on it. She had been hiding her OCD (though we actually saw glimpses, she was able to hide the dysfunction and we chalked her behaviors as quirky, maybe she'll outgrow it). I post mostly because of my experience with under treated for years Pandas with a now 17yo dd. Every strep infection has resulted in worsening symptoms and a lack of return to baseline. Now any infection makes her symptoms become triggered (cold, allergies, flu etc.) I am hoping Buster you are right, no permanent damage. Thank you all for all the knowledge, wisdom and perserverance you have shown. Ellie