Marie22

Thank you so much for sharing your experience. It is so helpful to get help from other parents. I must tell you momwithocdson that in our darker days in PANDAS 2 years ago, reading your posts in this forum helped us to keep hope for the future. I think we are going to see Dr. Bock.

Does someone have experience with Dr. Bock (PANDAS doctor with integrative medicine approach). Did you find it helpful? Or do you have other recommendations? Our PANDAS daughter has been on antibiotics and supplements for 2 years with good improvement but we are looking for a way to improve the chronic problems making her life still difficult. Her pediatrician has no other treatment option than antibiotics and SSRI and we feel that other approaches should be tried. She also has not been tested for other triggers than streptococcus. We live in Montreal but we can travel anywhere in New England Any recommendations would be appreciated!

I just signed. Thank you for this initiative. It is so important to improve knowledge and it's difficult to get a diagnosis when a disease is not in a guidelines for MD's. Whe had a painful experience here in Quebec with our child. Hopefully you will be eared!

Hi, Sorry your son is having this difficulty. The response to antibiotic treatment is an important tool to help confirm the diagnosis. But please be aware that amoxil is not always working with chronic strep infection. Our daugther initially responded very well after 10 days with cephalexin (altough she had been sick for months) but when the pediatrician changed the antibiotic for amoxil (for maintenance), her signs relapsed hardly after few weeks. An infectiologist from mass general hospital (in the pandas team) explained that they see better results with cephalexin or Augmentin and usually they dont use amoxil as initial treatment. When our child was changed again with Augmentin, she started improving again within 3 days. She is now 85% back. For the tests, ASO is usually high (and will stay high for weeks to months although it is treatted with antibiotics) when the bacteriology is positive for strep. But occasionally some kids have normal ASO with positive culture for strep. We have no experience with the Cunningham's panel but my understanding is that this simply confirms that an immune reaction against the brain is present (immune mediated encephalitis). I wish you the best. Marie

Hi everybody, Few days after my last message, things started to get very bad: compulsions, tics, aggression, hyperactivity came back as severe as during the worst period. Her family doctor changed antibiotics from amoxil to Augmentin 500 (Clavulin in Canada). Within 3 days, she started improving. We also started Omega 3, multivitamins, Turmeric plus probiotics and Vit D (she is currently on escitalopram an SSRI). As many said, amoxil is not enough for some kids with chronic tonsillitis. Five weeks later, she is now almost 80-85% back but irritability, hypersensitivity to criticism and rigid thinking are still there plus some compulsions and tics. It seems to be stable. I wonder if we can hope to get more improvement only with antibiotics or if we will have to go through other treatments, tonsillectomy or maybe increase the dosage of antibiotics? I still miss my DD. We have an appointment with Dr.Williams at MGH in October. It will be a relief to have doctors who can guide us through this. I feel so sorry for all the kids who can't get correct diagnosis and treatment because of the lack of knowledge of this disease (fortunately, 2 residents told us that they study the disease in medical school now). But we miss experienced doctors here in Montreal. This forum helped us so much to understand what is going on. Experienced pandas moms and dads who share their knowledge are a source of light in that nightmare. Thanks for sharing your experience ! Marie

My daughter is 11.5 yo. She received a diagnosis of PANDAS last May after beeing sick for 1 year. At this moment she was positive for strep at culture and her ASO where 800-1600. She did improve by 75% after 3 weeks of antibiotics (Cephalexin for 10 days and then Amoxicillin on maintenance for 1 year). Almost no more compulsions (we could see them melt) , just some irritability left but very manageable. Compulsions came back sightly the 5th week and within few hours relapsed before our eyes one afternoon (intense tics and compulsions). Now she is stable in that situation. She is really better than before antibiotics (in November she was so sick) but stays at a 50% improvement. We are in Montreal and it is very difficult to find a doctor who is experienced with this condition. Did anybody experienced similar situation or have any suggestions? (Present medication: amoxil 500 mg twice a day, vitaminD, escitalopram (SSRI)15 mg once a day). Thank you so much for your help. Marie22