kate_c

Thanks for link to the article...I can't see a test for mycoplasma in her labs. Ferritin was on the low end of normal, Vit D was fine, and thyroid was fine. We have an appt. with Dr. Latimer Dec. 6th. I pray she will help shed some light. We lost some time in this battle due to our pediatrician ruling out PANDAS based on normal strep titers. I took his word for it and starting researching Tourette's...but my gut kept screaming it was more. Then I found PITANDS and Dr. K...and here I am. She has been on 3 different antibiotics, 2 of which were just 10 day courses to deal with the recurrent sinusitus/tonsilitis, one of which was azith. for 15 days. Her pediatrician won't prescribe anything further because he is adamant it's not PANDAS. Other doctors have said it's a "Gucci" diagnosis. So maddening... Are the other tic borne illnesses tested via blood work at a regular lab? Did your child have Bartonella in addition to PANDAS? How does that affect treatment/prognosis? Did you use IVIG? I just found some interesting info on 14 s. pnuemoniae titers and sinus infection that sounds so much like my child. Another thing to explore... I so appreciate your time! This is such a lonely illness. I wish I could give you a big hug!!

Hi Kara, All bands of the WB were normal. We have had to go through 3 different doctors to get all of the testing we are discovering we may need. Nobody around here will listen. It seems Dr. K. just wants to proceed with IVIG based on a positive steroid burst. Can you tell me more about what other illnesses you believe could cause these symptoms? Our pediatrician has basically thrown his hands up in the air. We are flying solo aside from Dr. K. Thanks!

Can you elaborate on what the results were on this? Did any numbers show up at all? My dd's WB was supposedly normal, too, based on CDC standards. However, a Lyme expert just informed me that the one band that did show up on it was specific to the Borrelia bacteria (a.k.a. Lyme), so indicated that she had indeed been exposed. Like PANDAS, most every day docs, don't really know how to diagnose and treat Lyme. There are a lot of other infections as well that can cause these symptoms...Hopefully Dr. K will do some additional testing for those as well. is he the one that ordered the Lyme tests and prescribed the steroids? Kara

Hi All, I am VERY new to learning about all of this. I thank all of you for the information, posts and stories you have shared...they have been invaluable. My 5 year old daughter had her first bout of strep last December. Thereafter we had trouble getting her to go to pre-school without tears and meltdowns. We wrote it off as renewed seperation anxiety. She had another bout of strep in April. This set off a 2 month cycle of repeat sinusitus. After 3 rounds of antibiotics she developed a fairly severe eye twitch tic and ODD behavior issues. The tic disappeared after 1.5 months, but the behavior remained. We had crazy meltdowns all summer long. She started Kindergarten in September tic free. The second day of school she lost her first baby tooth and exploded in motor tics, verbal tics, echoing, tantrums, some odd ODD behavior (taking 10 steps backwards before getting dressed, jumping lines), morbid thoughts, and awful handwriting. A week later she had a full blown sinus infection. We are now locked in the familiar pattern of re-current sinus/tonsil problems. She has been on 4 rounds of antibiotics. Nothing touched the behaviors. She is allergic to amox. so we have been on cephalexin, omnicef and z-packs. Her titers are all normal. Her western blot for Lyme was normal. A C/T just showed sinusitus. The only thing blood work has turned up is an IgG sensitivity to casein and a high IgE (365). We have taken her off of dairy and are having allergy skin testing done this week. Due to the chronic sinus problem we just finished a steroid taper. Miraculously almost everything disappeared for the first week...then she showed some breakthrough on the tapering dose. At the moment we are tic free...but the ODD stuff remains as well as some muttering. Due to the positive steroid burst Dr. K has recommended IVIG. Should I get her tonsils/adenoids removed first? How can I be sure this is PANDAS? How much does IVIG cost? We have been to so many doctors. She is exhausted and so are we. Any advice would be greatly appreciated! Thank you...