braveheart

I'm SO confused, and would appreciate your help very much! My 12 year old son has been treated for PITANDS and PANDAS since 11/09 (for tics originally, then Pandas tx, but ocd/anxiety/new stimming still an issue). His bloodwork stats: IgE: 11/09: 580 5/10: 1030 (post bad PANDAS outbreak, Dr. later said if he tested 10K kids, less than 10 would have such high levels?) 3/11: 738 In a nutshell, Dr. thinks if IGe were to go down, son would be a much happier, relaxed boy. But how to do this??? During those same dates, his PANDAS titers were: 11/09: ASO 413, DNASE B 273 5/10: ASO 389, DNASE B 191 (post huge PANDAS outbreak) 3/11: ASO 363, DNASE B 202 Of note is he's been on antibotics (every other day, then daily) since 5/10, too afraid to take him off as he regressed when we tried, but his titers really aren't different from 5/10 - confused). He doesn't show signs of allergies - at least not like he did pre 11/09 treatment start. Now just an occasional stuffy/runny nose. So is food doing causing such high levels of IgE? (he's ocd about eating healthy, exercise, distorted body image, lack of confidence, anxiety/worrying, etc.) or environmental/inhalant allergies? How is he manifesting what's happening with these high IgE levels??? Is it possible ocd/anxiety are presentations? I've heard IgE can be dangerous re food allergies - but we haven't seen anything like this, not even hives. (When baby/toddler he did have lots of food allergies/hives/sinus & ear issues but not since). He's never had a yeast problem. Last visit Dr. saw no signs of viruses/bacteria, but feels his dopamine may be low (ran 2 conflicting tests). He's hoping it's because of a growth spurt is coming, but son has not grown taller or heavier since 11/09, and his IGF-I (HGF) was 181 on 3/11 (normal for 12 year old is 143-966, elevating with puberty, so it doesn't look like puberty is soon). Son's currently off antivirals, been doing some form of the B12/B6/FA shots/cream this whole time (recently went back to compounded version of cream and he is A LOT better mood wise), still doing antibiotics daily (zithro 250mg), an immunity building spray, and we've added GABA and 5HTP sprays - a therapist suggested trying to increase serotonin to help the ocd/anxiety. GABA says it helps stimulate HGF - who knows. I know this is a lot of information, but I really am confused and would appreciate your insight and experience. Will also post on OCD board, but I'm most familiar with the PANDAS board. Best - Wendy __._,_.___

I'm SO confused, and would appreciate your help very much! My 12 year old son has been treated for PITANDS and PANDAS since 11/09 (for tics originally, then Pandas tx, but ocd/anxiety/new stimming still an issue). His bloodwork stats: IgE: 11/09: 580 5/10: 1030 (post bad PANDAS outbreak, Dr. later said if he tested 10K kids, less than 10 would have such high levels?) 3/11: 738 In a nutshell, Dr. thinks if IGe were to go down, son would be a much happier, relaxed boy. But how to do this??? During those same dates, his PANDAS titers were: 11/09: ASO 413, DNASE B 273 5/10: ASO 389, DNASE B 191 (post huge PANDAS outbreak) 3/11: ASO 363, DNASE B 202 Of note is he's been on antibotics (every other day, then daily) since 5/10, too afraid to take him off as he regressed when we tried, but his titers really aren't different from 5/10 - confused). He doesn't show signs of allergies - at least not like he did pre 11/09 treatment start. Now just an occasional stuffy/runny nose. So is food doing causing such high levels of IgE? (he's ocd about eating healthy, exercise, distorted body image, lack of confidence, anxiety/worrying, etc.) or environmental/inhalant allergies? How is he manifesting what's happening with these high IgE levels??? Is it possible ocd/anxiety are presentations? I've heard IgE can be dangerous re food allergies - but we haven't seen anything like this, not even hives. (When baby/toddler he did have lots of food allergies/hives/sinus & ear issues but not since). He's never had a yeast problem. Last visit Dr. saw no signs of viruses/bacteria, but feels his dopamine may be low (ran 2 conflicting tests). He's hoping it's because of a growth spurt is coming, but son has not grown taller or heavier since 11/09, and his IGF-I (HGF) was 181 on 3/11 (normal for 12 year old is 143-966, elevating with puberty, so it doesn't look like puberty is soon). Son's currently off antivirals, been doing some form of the B12/B6/FA shots/cream this whole time (recently went back to compounded version of cream and he is A LOT better mood wise), still doing antibiotics daily (zithro 250mg), an immunity building spray, and we've added GABA and 5HTP sprays - a therapist suggested trying to increase serotonin to help the ocd/anxiety. GABA says it helps stimulate HGF - who knows. I know this is a lot of information, but I really am confused and would appreciate your insight and experience. Will also post on OCD board, but I'm most familiar with the PANDAS board. Best - Wendy __._,_.___

I can't thank you all enough for your advice and sharing of your experiences; I'm printing out this entire thread to research and plan. I'm so impressed with the support, knowledge, wisdom, compassion and advocacy of the parents in this group - pretty humbled by it. Thank you.

Thank you for responding and all the insight you've offered. CJ: Yes! We've "talked" on the practice's forum! EAMom and Nancy, thank you for your very kind and helpful replies. I have some questions that may seem elementary but I really don't understand some things: How is yeast overgrowth controlled at such high doses of antibiotics? This, along with the risk of AB resistance seem to be of big concern of my docs. Son weight 80lbs. Do the PANDAS concerns trump the concern of long term, high dose AB? What are the real risks of AB resistance? I may be wrong, but my limited understanding from this board is that Azithromycin targets strep in one manner, and Augmentin in another (the medical reasons went a bit over my head). If he has responded to the Z 250mg every other day, does that mean he wouldn't respond to Augmentin? I probably misunderstood him, but my doctor also said something about Augmentin basically is amoxicilin, plus somehing to extend the half life, so amox 3x/day was basically the same? If we try the higher dose Azithro would we do it for a set amount of time, hoping it achieved "remission" then drop down to a lower prophylactic dose for school? The tests. I know this sounds stupid, but I don't get how to do them. Do you order the CaM Kinase II test (how?) or the Lyme test (from the website mentioned on this board, I'm forgetting the name right now), does it arrive in the mail or something? Do you go to a lab to draw blood and they mail it off? Do our current doctors order it, do I prepay for it and hope insurance reimburses us? Who reads/interprets the results? I don't understand CaM Kinase - what does it tell the interpreter? I don't know what myco p is. Feel free to talk down to me on this one, I really don't get this. Involving one of the PANDAS gurus: do we fly out to see them, or is it possible for them to advice us over the phone/emails? If so, how is payment made? I know these questions probably sound stupid, thank you for all your help! Thank you!

I've been reading here for months, and thank you all for the incredible information you are sharing. We're a bit lost right now, and I'm worried we haven't been treating our son as aggressively/correctly as your children, but I'm not sure. I know this is long, but thought the whole history was important to understand our situation. ANY advice you could share would be appreciated more than I can convey. Thank you! Son 11, starting Middle School few weeks, dealing with tic/OCD problems for 2 years. He’s an otherwise healthy, smart, outgoing kid. Summer 2008 moved from VA to TX, stressful, some mood/anger issues over summer. Fall 2008: Neck jerking out of nowhere - age 10. Winter 2008: Pediatrician swab test negative for strep, so never considered PANDAS. Worried dealing with TS. Winter 2008-Fall 2009: Tics changed from neck jerking, throat clearing cough, eye rolling, and back again. During this time had a chicken pox vaccine, braces. Swine flu scares, son never (showed signs of being) sick. Told son would outgrow the tics. By Fall 2009, eye rolling and neck jerking escalating, depressed, finally admitted anxiety over unwanted and scary thoughts/images, like the devil was going to get him, worried going to ######, always apologizing to God, 2012, getting swine flu/diabetes, etc. Worried fat, not muscular (he’s very athletic, bit small/light for his age). Nov 2009: Found Neuro-Sensory specialists who specialize in role of immune/neurotransmitter disorders and relationship to CNS disorders/autism/processing disorders. They felt son had underlying methylation disorder the predisposes his immune system to have problems ridding body of viruses/bacteria. Believe IS not strong enough to kill viruses (T cell imbalance) so B cells overcompensate and result in inflammation of CNS and mixed signals leading to tics. (As baby had allergies, ear tubes, slow to talk, some slight processing issues, normal kid strep sicknesses, then rarely missing a day of school in elementary school - belief because his T cells weren’t able to do their job, so he was sick, yet never showed signs of it, but the continued taxing of his IS/inflammation of his nerves would increase). Believe that if fix immune system, body can rid itself of viruses and heal its nerves. Went on immunity building supplements (B12/FA/P5P, micellized D3, omegas, zinc, magnesium, etc.) as well as antivirals (amantadine 100mg and acyclovir 200mg daily plus hydrocort 10mg as needed. He also did a 5 day Zpack of antibiotics. Blood tests: ASO titer 413, DNASE B Antibody 273, homocystein & D levels low, leading them to believe dopamine was low and that played role in tics emerging. . Nov 2009-April 2010: We had our son back. Tics stopped 90%, his depression/anxiety left, he dramatically improved in sports and school, no spring allergies, and was very happy and confident. The belief was his IS was strengthened, able to decrease viral overload, resulting in less inflammation of CNS. So...I guess PITANDS? In Spring had teeth extracted and braces put back on, some jaw grinding tics but nothing that was interfering with his life. April 2010: Stopped antivirals, zinc, magnesium for a week, and saw some regression so put back on. Near end of month, scary regression. Tics came back (not fully) but disturbing images came back hard (mostly scrupulosity/blasphemous thoughts). Very depressed and scared. With this presentation doctors felt it was PANDAS, and started him on antibiotics: zithromycin 250mg every other day and diflucan 100mg twice a week, and probiotics twice a week. Blood tests: ASO 389, DNASE B Antibody 191. Within a week we had our son back. April 2010 to June 2010: All scary stuff went away, but only thing to not go away was anxiety over body image, but we hoped it was waning. Beginning with a high stress time in June, had increasingly irrational worry he was too small yet terrified of getting fat. Could barely get him to eat 1000 calories, and he was obsessed/depressed and worrying non stop. Needed constant reassurance that what he is eating is ok, always asking if he is too skinny/too fat. July: Doctors rx’d oxytocin, not to treat source but the symptom of anxiety. Worked great, he was eating again (although vigilant) and happy gain. Happiest we’ve seen him. Felt we had turned the corner. End of July marked end of antibiotics (11.5 weeks) and we discontinued. With slow regression, after 2 weeks off he was miserable again. He said he thought the tics and bad thoughts were coming back, and obsessive worry about his size got worse. August: Put him back on antibiotics and scary thoughts gone, he’s eating, but still vigilant and concerned, and he’s starting to lose the depression although still very hard on himself. Doctors want to try amoxicillin (3 times a day, don’t know the strength as have to go pick up at pharmacy). Said the zithro inhibits strep from growing and then the IS kills it, but amoxicillin is bactericidal. We are afraid to take him off antibiotics and antivirals. My questions for you all: Were we way off base to approach his treatment this way? Were his antibiotic doses way too low/wrong? Does he have it bad, or mild? We usually thought mild compared to stories I’ve read, and honestly, no one but our family would guess what's been going on with the exception of the tics in Fall 2008 that were so noticeable, but when that depressed and phsycotic thoughts, it felt very bad). He’ll be 12 in November, can we ride out til puberty? Have reached end of what these doctors can do? Lyme testing? IVIG? How manage school, what prophylactic meds? What now???

We live in Austin, TX and I've gone through the list of doctors on the aaem.com site. I'm overwhelmed with trying to figure out who to call for an evaluation appt. I've read Sheila Rogers book, that is why I thought to pursue an evaluation through an aaem doctor vs a children's neurologist, but how do I choose one that is 1) focused on children, 2) any good, 3) not a quack. None are local to me, so requires 2-3 hours of travel. 10 year old son has had tics since Jan. and they've gone from neck jerking to coughing to eye rolling, and back and forth. Pediatrician told us to wait it out. Husband and teacher believe it is stress related (we moved out of state last fall, hard on my 10 year old who doesn't ever talk about his feelings). I'm a wreck. Thanks for any help you can offer.