texascatholic

Yes, we saw Dr. Infante once. He is just starting to treat PANDAS and is in communication with Dr. Cunningham. We go back to him next week. I will provide an update! Dr. Rao in Plano is nice as well. God bless, Holly

Thanks everyone. Made me feel better. I will PM you, Emuls!

Hi There..., I'm just curious how the others who homeschool out there handle "ragey" days with their little pandas. When your child refuses to read or write do you try to force things or do you leave them alone and ride out the tantrum that way? We're in the midst of a reaction to some kind of virus and it's very hard to get our schooling done (not to mention the other 4 younger siblings - including 2 other schooler) that need my attention. Just hate the thought of falling behind. Sometime I really wonder if some of the rage stuff becomes partially a learned behaviour? I always am tempted to discpiline for it but after looking into her eyes I can tell it's not her fault. I'm sure you all know the "look". Just my thoughts for the day!

Hope you can get things under control soon! My one year old had some kind of fever/sickness (not sure if strep) and it's sent my PITANDS dd9 into a tail spin.

Thanks everyone! My dh is calling Igenex today.

Thanks for your advice, Smarty... My husband is going to call up Igenex today so we can get the ball rolling.

Sadly Omnicef has stopped working...bummed out. However, I am going to do a phone consult with Dr. Rao soon and see what we can do next. We are also going to do Igenex testing to rule out lyme (a standard lab test gave a negative result, but I've heard those can give false negatives?). The Omnicef worked beautifully for a week/week and a half, and then not so much. We are back to rages again. Wondering if this is all herx? We have an appointment with a local immunologist and will hopefully do IVIG soon.

Thanks for the replies... A quick question...she was on Azithromax for nearly a month (symptoms worsened) and is now on Omnicef (nearly a month - at first symptoms got better, but she is not doing as well now). If I take her off the antibiotics, can she have the complete Lymes panel? How long is it best to be off of antibiotics before taking these tests? Thanks, Holly

Hi There... We are thinking of investigating the possibility of Lymes with my PITANDS daughter. I am hearing so much about the IGENEX test and wondering if I can order it on my own or have to do it through a doctor? I'm not sure there are any LLMDs in my area (San Antonio). Also, wondering what to order from them and the cost. Thanks in advance! God bless, Holly

If it makes you feel any better, KeepOnTrying,we too have had symptoms for 4.5 years and finally found something thar is helping. Hope you have a breakthrough soon! We leave for a 3 week trip tomorrow so I really hope things keep improving. God bless you, Holly

Could it be possible that we are seeing an improvement after just 3 doses of Omnicef????? Wow! Hope so! She seems much happier and closer to her old self. Intersting. Blessings, Holly

You can try Dr. Rao in Plano, TX (very knowledgeable) or Dr. Infante in San Antonio who is just starting to treat PANDAS. Hope you find some help soon. God bless, Holly

Hi there... We don't know if there is an active infection or not because we've never had elevated strep titres. We seem to have PITAND. Our Cunningham test came back with elevated CamKinase (139 while not in exacerbation) and elevated Dopamine1 (2000). He said we can try the steroids if we don't get results with the Omnicef. Don't know what's going on, but determined to get to the bottom of things. I hope things get better for you as well! Holly

Just spoke with Dr. Rao. He is not local for us, but we are using his services along with Dr. Infante who is local for us. He changed us over to Omnicef after Zithromax has not yielded any results (in fact, we've gotten worse). He wants to try a dosage of 250mg twice a day for 3 days...see what happens, and then switch to 150mg twice a day. He says we can do a steroid burst if we see no results from the Zithromax. Our family is travelling to CA for a few weeks starting this Saturday, and we really NEED this to work. After we get back, we plan on doing IVIG. I'd love to hear other Omnicef stories because I don't know much about it. God bless, Holly

Zithromax is the first one we've tried. The symptoms seemed to worsen when we started it. More OCD, but less tics. More anger and rages. Not sure why. The dosage has been 500mg per day (she just turned 9 and is nearly 70 pounds). Praying for answers...thinking of changing to Augmentin and giving it a try. We are about to leave on a trip to CA. Having an exacerbation during a trip would not be fun. Holly

We had our appointment with Dr. Infante last Thursday. He is a big believer in the Cunningham test and although associates PANDAS/PITANDS strongly with strep, is still willing to do IVIG for us based on her Cunningham test results (we don't have elevated strep titres). We are in the midst of some tough times. Her situation seems chronic now. Our last remission of symptoms (about 1.5 months aqgo) lasted for a glorious 4 days - I got to see my real daughter again. We have done three weeks of Azith now and no real results to speak of. Wondering what to try next? With all this talk abou the Olive Leaf Extract, maybe it's worth a try. Will keep praying! God bless, Holly

we are almost 2 weeks into zith and still problems. We couldn't bring DD8 to Mass for the third Sunday in row due to her screaming if we don't comply immediately with OCD rituals. Still hoping and praying things get better. God bless you all, Holly

I know how you feel. My DD8 is acting out in similar ways right now. She was diagnosed with PANDAS earlier and we have to check for Lyme soon. My faith is what gets me through. Hang in there! God bless, Holly

Yes, Dr. Rao in Plano is very nice. We are going to see the San Antonio guys on Sept. 16 and I am excited for that. God bless, Holly

Yes, we had a PANDAS diagnosis by an immunologist. We also had elevated antibodies and CamKinaseII. My daughter has some tics, but her main problems are OCD and rages/tantrums right now. Today was better than yesterday, so I am hopeful. He said to give 2 charcoal tablets twice daily 2.5 hours after a meal. All of this sure is puzzling and keeps me on my knees. Let's keep hope alive! God bless, Holly

Hi There KeepOnTrying... I just spoke to the dr. today. He said I could add charcoal tablets in case it is a die-off. He wants me to stick it out with the Zith. I'm going to try to keep going with it. We are also doing some immunological tests in that mean time that he is ordering today (igg sub-classes, flow cytometry, t-cell studies, etc.). He mentioned that adding too much stuff at once will create too much die-off and aggrevate symptoms. I am doing probitics. He also told me that Zithromax is the best if you want to avoid yeast issues. Hope this helps, Holly

My daughter who has been having the trouble with rages and bad OCD even after starting the Zith lost a tooth tonight. Could this have caused the flare up? And if so, why???? God bless, Holly

Horrible Meltdowns and new tics today. Wondering if the Zith should be abandoned? We are on day 9. What would you do? I called the dr. and left a message. Does is sometimes get worse before it gets better????? God bless, Holly