vern_dave

Thank you for your prompt reply rowingmom. I'm not so sure Bart is not in the mix just because of neg test. She has igg titers for Myco, EBV, CMV and EBV though no current infections. Our DD has been affected in many ways. Again, thanks for the info and contact link for Julie. There is a ND that is not far from us and listed on Buhners website as a provider. It's always such a chore trying to decide who to see. So much wasted time and money. I just want to provide her with some hope.

rowingmom. I'm new to the whole Lyme aspect of our DD's journey. We recently received her results from Igenix testing and tested positive (igenix) for lyme though neg for bartonella. We now think it's why she has not responded to the many interventions for the PANDAS dx we have been dealing with for over 2 yrs. Because of the sudden onset after a strep infection with a scarlet fever rash we are pretty sure PANDAS is in the mix and now Lyme. I have been reading the books by Buhner and am interested in his approach and protocols. My big concerne is if our DD will comply with taking the herbs/meds. After 2 yrs of taking meds that taste so nasty she is very oppositional. She just turned 11 and still does not take pills. Did you have to deal with this? Did the practitioner who helped you advise patients via skype? I'm just wanting my little girl back. Thank you...... David

Sorry for the tardy reply. I truly appreciate your responses but, lost my password and with the holidays and so forth.... My DD just turned 10 in August and there is one other curveball in her situation. She does have Down Syndrome with no other health related issues that go with that dx. Prior to PANDAS onset she was very verbal to the point of (we thought) cracking jokes. She has improved in many areas such as severity of anxiety, sleep issues, appetite (though still some food aversions) and regularity (which was alway an issue for her). But, the cognitive side of things including speech has not come back. Even though baby-talk started at onset she still spoke and and sang at the same time though the interactive/conversational side was lacking until about 4 months ago ( as stated in original post ). I feel she is still in there somewhere and many times I notice she recognizes her new limitations and rather than work through them she avoids situations that remind her of the things she once was capable of. As an example..... I bought her a desktop computer (just for her) to visit her favorite web sites. She was fully capable of logging onto and finding whatever she wanted on her selected web sites. Well, yesterday I'm sitting at her computer updating stuff and she gets in the chair but once I encourage her to engage with the computer and the site she once enjoyed she got up quickly and walked away. Anyway, we are looking at taking her to California and would like someone else to take a look at her. I have a couple of providers i'm looking into but would really like to ask parents in California about them. Can I mention thier names on here? Thank you so much and may all of you have a blessed and prosperous New Year with much healing for your children.....

Greetings fellow parents, I'm new and have a situation I would like you to help me with. Our DD is going on 18 months since dx for PANDAS. She has been on abx for most of that time and also had 1 HD IVIG about 6 months ago. While she has been much worse (symptom wise) in the past the biggest concerne for me right now is the baby-talk. Her onset was classic PANDAS including baby-talk and the strep rash but she never lost all her ability to speak words. But, in the last 4 months or so she gradually spoke words less and less to where now it is very rare we hear a real word spoken. There are other signs of autistic type behaviour and hence the title of my post. Has anyone ever heard of this happening? Also, is it true that PANDAS does NOT result in permanent brain damage? Thanks in advance.