Bill

SFMOM - thank you for your input. I went to bed last night realizing that I forgot to list a lot of his symptoms that are common to many here (tics, poor math, limited diet). I also did not list some of his symptoms that are opposite to many here. He urinates twice a day - whether he needs to or not as the saying goes. Sometimes he goes three times a day now, perhaps a small victory as well. No problems sleeping. Aversion to sound/light? Nope! Light does not bother him and seems like I'm always yelling at him to turn the TV down. His hearing is fine, we had it tested. He also recently started eating pot pies to include the vegetables inside. This is a kid who won't touch pork&beans and mashed potatoes or much of anything else in the last couple of years. So yes, I do see eating the pot pies as an interesting development. He also hyperflexes at the elbows like nobody's business. As silly as that sounds, doc. believes that to be another sign of the bartonella. Who knew. Just wanted to mention these as these are the other reason I've not posted sooner. For as many symptoms he shares with many others, he's the exact opposite on many as well. (Dr. J. relayed that he usually sees the opposite of dystonia, the term which is escaping me at this early hour.) I should also mention that Dr. J. believes Lyme & associates have been an issue for longer than a year. Dr. B. believes months but less than a year. : ) Like most here, we have no way of really knowing what came first or when. I do believe that we are on the right path though. This million dollar question is on my list of questions for Dr. B.

Hello all. I've been "lurking" for the past 1 1/2 years. I've not posted before as I really have little to add to this wonderful forum as we are still finding our way through all of this. And frankly, we've not hit upon anything that has worked - yet. Like many, I started out on the PANDAS forum and have gravitated here with new diagnosis....I think the time has come for me to join in and of course - I have a question for the experts. The quick question, we have been treating for Lyme for about 3 months (antibiotics). Son was diagnosed with strep (PANDAS), Lyme (Igenex), bartonella, and Dr. J. believes babesia is at play. We have seen some improvement in eyes and a foot (dystonia) but not OCD, not behavior. If anything, OCD is getting worse again since December. I learned that Dr. B wants to to IGIV. I've been scouring the forum to figure out if we should proceed with IGIV now or wait a little longer? What do folks think? The summary of our journey - some of which is hindsight...... Currently, 12 years old; diagnosed with generalized dystonia, PANDAS, severe OCD (contamination), Lyme, Bartonella, anger issues (controlled by SSRI), and those wonderfully dilated eyes. Perfectly healthy little boy with sweet disposition. Very happy. No terrible twos. We had the terrible fours that I now recognize as rages. After six months, settled down. Not quite as sweet and happy but hey, he was growing up.... We looked at old pictures when he was five, fingers on his right hand are spooning slightly. In kindergarten, we can not determine if he is left or right handed. He's not really successful with either hand holding pencils. (He settled on left but really, we still do not know.) At 7, his behavior begins to deteriorate. His walking becomes abnormal (irregular gait, leaning over). Physically, he seems to stop progressing as far as coordination and athletic abilities. He's my son so I wasn't too worried about lack of athletic ability : ) but he should not be moving backwards either. At some point, his pupils become dilated until they are mostly black most of the time. By age 8, he is diagnosed with Dystonia by neurologist who shrug us off for the emotional changes and the eyes. Fortunately(??) Zoloft tames the rages (for the most part). For over three years we see doctors and all I ask is that they consider the movement disorder and behavioral changes (and eyes) together. All of the neurologist we see shrug us off sticking to the dystonia diagnosis and referring us to psychiatrist for behavioral. Psychiatrist are happy to keep writing the prescriptions. We feel we have no choice; when we try to remove/reduce the Zoloft, raging returns within a day of a dropped dose. As an aside, I could tell no one believed me when I relayed that his behavior improved within hours of his very first dose of Zoloft. During this time, we find that Artane helps with the dystonia; over the years, the dosage increases as his dystonia worsens. During this period, we observed a pattern of increased anger soon followed by increase in dystonia symptoms. And the doctors shrugged......To be clear, we never observed saw tooth. My son's journey has always been bumps up (or down depending on one's perspective). Just under two years ago, we are hit by raging (Zoloft no longer working); worsening of dystonia (which we predicted based on behavior worsening), and then comes the OCD (contamination). Fortunately, the then current psych. utters the word PANDAS which sets me off on this journey. The summer of 2009 was pure ###### as many of you are familiar with. The OCD was unbearable. The raging was worse. We started looking into facilities that could take him.....In late July, Prozac was prescribed and like the miracle Zoloft provided some 3 1/2 years earlier, the raging was manageable. Don't get me wrong - I hate giving him the SSRIs but it is better than our other alternatives (are there any?) That also gave me time to start identifying doctors for the PANDAS. My son had PEX through Dr. L in November 2009. His eyes improved but nothing else. I asked about Lyme testing but they came back negative. Several months later (last summer), was able to have Lyme testing through IGENEX and a doctor who has experience with respect to tick borne illnesses and suspected bartonella as well. Both were positive. We spent some time doing consults and figuring out which doctor would lead the treatment. Though we had been working with Dr. L.; we also consulted with Dr. J. (on advice of Dr. L. and local doctor) and Dr. J. recommended consult with Dr. B. We opted for the local doctor to oversee treatment. This is not a negative against any of the other doctors, we just felt that having someone local would be better for us long term. We also felt that she (an internist) could help us through all of the direction from these experts. Our initial exam with Dr. B. was in October, follow-up will be Monday 31 January. And yes, I (we) feel very lucky to be able to consult with 3 out of a very small number of doctors nation wide who get any part of this. (I'll feel luckier when the OCD turns around.) I should mention that we also were seen by Dr. Perlmutter (psychiatrist) and Keith Saylor (psycholgist) in Herndon, VA - both who are PANDAS savvy. Right now, my (12 year old) son is on the following (below). I say three months but really we spent the last three months getting to this point. Augmentin, zithro, and tindamax have been pretty constant since early October. After the last couple of months, his foot is much better (just one area the dystonia was affecting) and we discovered his blue eyes again (yeah). Artane: 2mg daily Prozac: 20mg daily Minocycline 50mg X 1 daily Azithromycin 250mg X 2 daily Augmentin ER 1,000 X 2 daily Tindamax 1 tablet Fri pm, Sat am + pm, Sun am only B12 2,500mg periodically Vitamin D 2,000 IU periodically Coenzyme Q-10 100mg day Vitamin C 500mg periodically Florastor 2 daily (Saccharomyces boulardii, 250mg) Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B) Saccharomyces Boulardii + MOS 5B/capsule X 1 daily We also tried the following for one weekend only. My son agreed to try it again in another month (or two). Nattokinase 36mg X 1 (Sat. night/Sun morning) Lumbrokinase 20mg X 1 (Sat. night/Sun morning) EDTA 500 mg X 1 (Sat. night/Sun morning) Sorry for the long post. Guess that's what one gets for holding out for so long. If you're on this forum, then you understand that the above is the highest of summaries. My next posts should be more coherent. Thanks, bill ps - I do not check this forum every day but will try this week!