Mary M

Hours before reading yuour post I made an appt for my dd with a clinician who utilizes homeopathy. You have just cemented my decision for me...unfortunately, the appt is for Dec 14. But in the mean time, I look forward to hearing more positive news from you in the coming months. Mary from Michigan

I have a friend who is in China as we speak getting stem cell treatments for her son. NOT PANDAS--something else entirely. But in China the use of stem cell therapies has become a huge market. Here's a link: http://www.stemcellschina.com/index.php/en/enquiry-en/inquiry-en?blog PANDAS does not show up on their list but that doesn't mean it hasn't been discussed. The rodent research on bone marrow transplantation and OCD_Trich is very promising. I'd try it in a heartbeat but i don't know of anyone in the US who's providing this kindo f tx. Mary from Michigan

My dd was d/c from her psychologist's service in spring of 2010 as she had made no discernable improvement over 17 weeks of CBT. I have been contacting mental health practitioners today in an effort to find someone to help my dd get past her OCD after 2 HD IVIgs. So far 2 psychologists have explained to me that OCD is the same regardless of the underlying cause and the CBT/ERP would be the same as well. Those I called today were all on the list from the IOCDF. One was "aware" of PANDAS but said that part didn't really change his practice methodology. The other has seen a few PANDAS but uses all the same txs with PANDAS and nonPANDAS OCD. My dd is one of the Dr C PK PET scan recipients (activiation in the caudate and putamen). One of the psychologists stated that PET scans are not effective tools for OCD as CBT alone can eliminate the evidence that was previously seen on a PET scan. Guess I'm just hoping someone here might assure me that I'm doing the right thing adding therapy in at this point. Getting her to the appts in 2010 was a nightmare for all of us. She was worse with every visit. Thoughts anyone? Mary from Michigan

We were told by our PANDAS doc that the benefits of IVIg #2 would appear sooner than #1 as well and our experience did not reflect that at all. Our dd has had a longer period between IVIgs. It is a long daunting time table toward healing. Mary from Michigan

Thank you for sharing. My dd has had 2 HD IVIgs and antiDNAse B is still elevated so PEX may be our next route. It is always such a relief to read of someone's success after any treatment. May this wonderful health continue. Mary from Michigan

My classic PANDAS dd had a neg ESR too. I have been told by PANDAS docs that the ESR can not discern the inflammation created in PANDAS. Mary from Michigan

My dd had her first discernable PANDAS exacerbation at age 7.5. She returned to normal function in 6-8 weeks without any intervention. She did not have another exacerbation for 4 years but at age 11.5 she received a DT vaccination (no acellular pertussis due to her sister having a reaction at 6 months of age). She has been battling PANDAS ever since. Two HD IVIgs, abx for 15 months solid and her antiDNAse B is still elevated. In our case, if I had refused the DT booster....would my dd be functional? Who knows....but I would avoid any vaccinations if at all possible. Mary from Michigan

Great idea. I am I Michigan and I would be happy to offer a free ride to and from to anyone in MI or along the way to Indy. Mary from Michigan

You already know my dd had the PET Scan with Dr C but I thought it might help someone who reads this to know... my dd received the PET Scan and it clearly depicted "activation" (inflammation) in the basal ganglia. Mary from Michigan

No diabetes here but my neighborhood is bursting at the seams with Juvenile diabetes. As a group, we have had many discussions as to the prevalence of "autoimmmune dysfunction" within a small radius. Mary from Michigan

So good to read something positive. Thanks for the update! Mary from Michigan

Denise, Thank you for sharing your family's story. Our dd's story is very similar...only two HD IVIGs so far. May your journey continue in this positive direction. Mary from Michigan

We have not been able to decrease augmentin 875 twice per day even following 2 IVIgs with Dr K. We even tried (with discussion with Dr K, splitting the prophy dose of one 500mg augmentin to two doses per day of 250 mg augmentin but it didn't work). Mary from Michigan

Can I just sit here and cry...this is such wonderful news. May the progress continue and may your whole family continue on a positive path toward health and function, Mary from Michigan

If I had a chance to do this all over again...I think I'd do anything as immediately as possible to help prevent the downward spiral we have witnessed in our dd's life. PANDAS has taken so much from her. She has lost two years of her life...irreplaceable years. I think part of the research study is to determine the efficacy of IVIg as a rapid response treatment. But I am a science-y type person so this research appeals to me. IVIg, PEX, long term high dose abx all have their drawbacks for our children....but quality of life...that's what's a stake in my home. These are very challenging decisions indeed. Mary from Michigan

Our dd has had 2 IVIgs with Dr K. Mary from Michigan

IVIg #1 June 2010-augmentin 875 mg twice per day for 1 month, then 500mg once per day, increased to 875 mg twice per day for every bout of illness IVIg #2 March 2011-augmentin 875 mg twice per day after trying 250 mg twice per day and deeming unsuccessful Mary from Michigan

The pain and sorrow we feel as we watch our sweet innocent children suffer to the point of no longer wanting to live is just so unbearable. Please know you are not alone, your child is not alone and we are all here for you...particularly at these most difficult moments when all we can really do is vent to others who have been there and know the pain you bear. Mary from Michigan

Have you heard of dr. Chugani at children's hospital? Was Going to try and book an appt. Was wondering if you've heard anything about him. I read about him on another message board but no one really mentioned if how good he was, although he is the chief so I'm assuming/hoping he knows his stuff. Although you never know anymore. Dr Harry Chugani, MD is a Ped Neuro who has an excellent reputation in the care and treatment of children with seizures as well as Tourette's/tic/movement disorders. He stumbled upon PANDAS while using his special PK PET Scan while researching Tourette's. He discerned a different type of "activation" on the scan that has allowed him to now explore PANDAS with PET Scan imaging. He is new to PANDAS but seems to be working very hard to learn about it from the PANDAS experts. Dr Diane Chugani, PhD also at Childrens- specializes in autism. We took our dd for the PET Scan-PM me if you want more info. Mary from Michigan

Sudden onset behavior changes at age 7.5 prompted our ped to order a CT Scan with and without contrast to R/O a mass. Scan was normal. Five years later during 3rd major exacerbation of PANDAS our dd received Dr Chugani's PK PET Scan at Childrens Hospital of Detroit and results were positive for activation in the basal ganglia (caudate and putamen to be specific). Movement disorders have been present during each exacerbation but this latest has been particularly movement based. Mary from Michigan

Hearing positive reports like this really make it so much easier to get through a day! Thanks for sharing...we can all use the hope...It is my belief that even the smallest successes are vital to any lasting effect and it looks like your ds is recognizing those successes, attributing medical care to them (wanting to continue abx means he sees the connection). All wonderfully good news! Mary from Michigan

Thanks for sharing. Mary from Michigan

The wait for results post IVIg can be grueling. In your rational mind you know you've read about the "gets worse before better" and "turning back the pages" BUT your heart says I did this treatment for my child's better health...and I'm not seeing health. The road to any recovery feels so long and arduous. We are 11 weeks post HDIVIg #2...the movement disorders have been painful...both to observe and experience (for my dd she complains that parts of her body hurt--of course they do, anyone's body would hurt from all that purposeless movement). As for the OCD--that's painful too...seems to torment my dd. But, on the bright side...we did IVIg#2 because we did see improvement after IVIg #1. Granted, it was a LONG time after (started after 6 weeks, slowly, painfully slowly...and continued slowly, painfully slowly for months) until reinfection returned her to dysfunction again but not nearly as bad (mostly because we got IVIg faster). So there is hope for healing...and perhaps someday none of us will second guess our treatment choices. But for now, unfortunately, that seems to be one of the many challenges of living with PANDAS. Mary from Michigan

Wonderful to hear the school will be accomodating. But so sorrowful that your ds's function is so debilitated. So many heartbreaking posts lately. Mary from Michigan

For us, each exacerbation has presented differently...any assortment of the numerous symptoms can lead to a PANDAS diagnosis. Mary from Michigan