my2girls

Thank you for your replies, I will take them all into consideration. I am going to call about the study tomorrow to be sure about the qualifications. We will work on getting ourselves strep tested. Do you know if a oral swab is enough or ASO titers will be needed. As for the homeopathy we will proceed with caution if we go that route. Thanks for the advice!

I am not sure which direction to go with my daughter. Has anyone had a very positive result with themselves or their child doing things naturally. (With vitamins, diet etc.) Feeling family pressure to treat her homeopathically but I am an RN and pull towards the medical side of things. Knowing the brief version of where my daughter is at might help with the advice. She had strep & scarlet fever in April, seperation anxiety started right away then symp. Were masked as she went on abx in May for a UTI. Then at the end of June early July things got out of control, OCD, handwashing, clothing sensitivity, sexually intrusive thoughts, aggression, moodiness, "peeing a little", more separation anxiety. At this point we had not sought treatment for her bc all of these symptoms would come and go, in fact in August they were gone again until school started at the end of August. In Sept her PCP sent her to a therapist. I must add that I mentioned PANDAS to both and was blown off. The therapist said this is "Def OCD" and sent us to the psychiatrist. She just confirmed a Dx of OCD and again ignored my PANDAS questions. Next doc we visit believes in PANDAS and ordered labs and tests. All of which were normal. In the meantime we meet with 2 doctors in the PANDAS clinic at children's hospital of Pittsburgh. They gave her the official PANDAS Dx, which don't get too excited they are not willing to treat except with SSRI's and intense cbt. All the while my daughter is getting worse, Hyperactivity now in the picture and won't go to bed for hours after the bedtime. Separation anxiety so bad she is missing school. So we see an ENT around this same time who thinks sleep apnea could play a role in the behavioral changes so tonsils and adenoids came out 2 Fridays ago. During our desperation while waiting for surgery day and her symptoms were worsening we called the PANDAS believer and he gave her a 10 day rx for Omnicef. Day 7 of abx we saw dramatic improvement! (Day 8 was surgery day). So days 7-10 were Great! So here we are 9 days post op of t&a and 7 days w/o abx we see symptoms slowly creeping back into her everyday life. However, no where near as debilitating as the week prior to surgery/abx. So I believe we are at a crossroads. Do we go back to abx and try for IVIG (that my ins doesn't cover) or go homeopathic? My brain is spinning! Any suggestions please!?

Hi, curious about your convo with Dr k. About why abx work when there is not an infection. Can you recall what he said. Also, this may sound strange, but also curious as to the cost of ivig treatment with Dr k. My ins. Does not cover ivig for PANDAS. We have bcbs of PA. Which is very frustrating bc they are a large ins company. I had emailed Dr k and he feels our next step should be ivig, but I don't know if we have the funds to proceed sadly enough! Not really sure what (or how) to do. Thanks for any of your input.

His symptoms do sound like PANDAS to me as well. My daughter who is diagnosed with PANDAS did not have tics. She did exhibit OCD behaviors but not consistent. Her biggest symptom now is separation anxiety. I am not familiar with Dr. B as this is all new for us and we are still trying to find "good" help. Regardless if seeing just one more Dr will help your son I would go for it.... They could b the last Dr u need to see:). Best wishes!