ptcgirl

Absolutely on the mycoplasma causing a reaction for PANDAS. From my understanding, any infection (with or without symptoms) can cause it. Sinus infections from bad allergies are often a culprit in our house. My dd gets really sick every spring. Seek out a great PANDAS doctor. I think you are on the right track.

I'm becoming very concerned about Streptococcus in foods. After doing a little bit of research I've found that the bacteria is used in nearly all cheeses and yogurt, plus it is in "the production of pickled vegetables, beer or wine, some breads, and other fermented foodstuffs, such as soymilk kefir, buttermilk, and others[12]." Interestingly it also changed names.... I wonder why?!?! It is now called Lactococcus lactis according to http://en.wikipedia.org/wiki/Lactococcus_lactis My question: is this where all of the antibiotic resistant strains are coming from? The overuse of this strain and not allowing it to fully develop.... I'm not a scientist but this seems like it could cause major issues. Anyone know anything about this? Has anyone tried completely taking out all dairy? I guess breads and the other stuff too? So intrigued by all of this.

I didn't know that yogurt and cheese used the strep bacteria! How did I not know this!?!? Just did a quick google and found http://www.ebi.ac.uk/2can/genomes/bacteria/Streptococcus_thermophilus.html I've been pushing yogurt like crazy. Even the nurse at Dr. B's office has told me to make sure she's getting enough yogurt and cheese for the probiotic. How the heck are we suppose to know which food items have it when it isn't on the label?

Those are great ideas from the previous posters. I know for us personally it has been incredibly difficult too. I had to quit my job to care for my PANDAS DD. Very large financial strain. Finding care for my other dd is hard too. We've now enrolled her in a school near my husband's work so that he can do pick ups/drop offs while we are seeking medical treatment. Thankfully our extended family came to our financial aid for medical treatment and tuition. It was hard to accept outside help, but we had no other real choices and are eternally grateful for the help. Good luck!

That is fantastic news!

If your daughter really has a good relationship with this therapist (I TOTALLY get how important that is too), then ask where she will be establishing her private practice. Maybe it will be closer to home and then she can still meet with her occasionally. Good luck! Hope you can find some vacation time among the CBT work.

Dr. B is our choice too. We travel from Georgia to CT to see him. Worth it. I think having regularly scheduled phone consults are important. I may do that too. We did one before and it was helpful. It isn't easy to get in touch with him otherwise since he is so busy with patients. I wonder if at some point he will limit new patients. I don't see how he can keep going at this rate. The first time we saw him my dd was not in a flare either, so I don't think that is a big deal. The important thing for us was establishing a relationship for future treatment which we REALLY wound up needing. Good luck in your decision.

Can't really answer too much since I'm not a doctor, but I do know that my dd has been on Zithromax a ton and an additional 5 days is nothing compared to the months she was on it to treat Lyme. If it were me, I would give him the additional 5 days, but that is just based on our own experience and what I would do. As mentioned in other posts, please make sure to document everything. It will help you down the road. Keeping a daily journal really helps too. Good luck!

Thanks for sharing. Makes me wonder about vaccines. I had such reservations about giving them to my kids. Wish I would have listened to my gut.

1. Good question. i would like to know his feelings about that too. It was personally very helpful for my dd. 2. DD allergies are SUPER bad. Allergic to just about everything except most foods (dust, dogs, cats, trees, grass, etc). Sinus infections definetly cause flares and we have difficulty getting them under control in the spring particularly. DD hasn't had a well spring for the last 5 years. Tried shots but just got tired of doing them every week. Will probably go back to them. Dr. B wants her to do these consistently. Meds (singulair, veramyst and mucinex) help. 3. Thank God only one DD has it. My other DD doesn't. I'm more thankful for this than just about anything else in our life. I worry that it may come happen to her too but she is 11 now and I feel like we are a little bit out of the woods.

Day two quick update: She was able to get my daughter to say words that she's been too afraid to say for the last (gulp) five years.

We have a familiar saying between another PANDAS mom and me, "Just keep swimming, just keep swimming" (like Dory from the Nemo movie). It just sucks sometimes and nothing really makes it better. It is awful seeing your child suffer and your family come apart at the seams. I wish I had answers for you, but I just have our personal experience. My DD was 9 months without any symptoms post tonsillectomy immediately. When the symptoms came back (and coincidentally she tested positive for Lyme, Bartonella, and Babesia), the initial flare for us lasted for awhile (just like starting over with PANDAS). Getting rid of the Lyme is crucial for our kids. It just screws everything up and I don't think they can really get better with it being in there. I'm pretty sure my DD's Lyme and coinfections are gone now. She is truly improving now and is doing extremely well post ivig and was able to do a steroid burst without going into a state of severe depression. That is just the way it happened for us. I think each of our kids is so unique it is hard to figure it out. I'm so sorry that you are in crisis mode. I will pray for the flare to go away and for healing for your family.

Interestingly, my DD12 lost her "filter" when she got PANDAS (at 7). That was one of the first things we noticed. It was like her common sense went out the window! She started saying exactly what she thought of friends, family, teachers, etc to our faces. No tactful filter anymore. Just all came out. Even though she is much older now and has dealt with this for over 4 years (can't believe it has been going on this long...), she still struggles with it. I think it must have a lot to do with just so much going on in her head that she just doesn't have any more room for thinking about what she thinks before she speaks.

I'm so excited. We've searched and searched for someone to do real CBT/ERP with our DD. I think we've found just the right person! YAY! We were scheduled to travel to FL to the Rothman Center to do the 3 weeks of CBT with Dr. Storch's program. After speaking with him on the phone, he recommended that we see Dr. Mary Keeley in Atlanta instead. Apparently she trained with Dr. Murphy and Dr. Storch for four years while working at the center down there. Anyway, we decided to see her in Atlanta since it is much closer to home and some of my DD deal with home issues that can't be addressed that far away. I'm so glad we did! We met with her for the first time today and she seems fantastic. She was incredibly knowledgeable about PANDAs/PANS, OCD, and all of the rest that goes with it. We've tried several other therapists and even though some know about CBT and OCD, none of them really had a real plan of action of getting my kid well. Dr. Keeley really seems to know her stuff. She did the most thorough evaluation that DD has ever had concerning OCD and has a true plan of how we are going to get to the bottom of it. I will keep you posted about how I feel about her and her program as the weeks go on, but for now there is someone in the state of Georgia that knows CBT and about PANDAS. Finally! Now if we could get an immunologist that treats PANDAS with IVIG down here....

No great advice. Just chiming in to say that you r not alone. Hang in there. I am praying for your family.

I'm so sorry that you and your child are going through this. Our dd didn't ever get chicken pox so I can't tell you much about that, but I do understand the raging, inconsolable, argumentative, obsessive behavior all too well. Just reading what you wrote took me back to that bad spot. Hang in there. Better times are ahead. This will not last forever. Treasure those moments she is asleep or with her dad and try to step away from it for a bit. Vent, vent, vent here since this is the place to let it out! I'm praying for your child right now. I hope today gets better for all of you.

I will use this technique with my dd the next time she needs to be checked. although, our drs locally don't really ever want to check her anyway. "She's on abx.... She couldn't possibly have...." I'm so tired of crappy doctors. If I ask them to check, they should check!

I can relate, as I'm sure most of us can. Watching a child suffer is devastating. When things are bad like that for us, I try hard to distract the whole family as much as possible. My DD loves the computer and most of the time has serious time limits. During bad times I let her use it pretty much as much as she wants. It really distracts her. Going on a quick trip or mini-vacation helps too. Just getting out of the same routine. Ground hog day of living in the PANDAS nightmare. None of this takes it away but if I can figure out a distraction it helps the time pass. Are you on a standby list for IVIG so if someone cancels you can get in sooner?

Bought both of these yesterday from amazon. Hope they help get rid of any lingering strep. Want it out of my house for good! Thanks for the info on this!!

Just ordered some through Amazon. Thanks!

My DD had hers removed and was 100% symptom free without any meds at all (unfortunately including abx) for a full 9 months. It was like she woke up without PANDAS anymore. Crazy. I wish she had stayed on a low dose abx so that she would not have gotten reinfected after those 9 months. It all came rushing back and now she's doing ivigs. I would absolutely recommend removing but keep a low dose of abx so reinfection doesn't come back. Good luck!!!

Can you buy that over the counter? Never heard of it.

My Dd 12 has pandas and starte her cycles over a year ago. No change in pandas. If anything it is worse. I was hopeful that when he started the panda would go away. No such luck. She is seeing Dr B and she just had her first Ivig. Dr b told us Ivig will cure pandas for her but I know there is controversy with this.

No suggestions here since I don't live in that area but we all know how u feel having drs who don't believe u and/or won't take time to review the studies. You are not alone.

Off of abx for four weeks could be a challenge right now. Sounds interesting, though. Thanks for your reply!