purple66p Posted July 22, 2010 Report Posted July 22, 2010 Hi--I've only recently learned about PANDAS after my son was seen by a new doc (Stewart at Austin Neurosensory Center) for sensory integration problems. He was diagnosed with bipolar and OCD 6 years ago (13 yo now) and we've been trying to treat that with only limited success. As I read more about PANDAS, I've found an almost perfect description of my son's symptoms. However, my son has had no know strep infections, but the doc did both strep titers and the #'s were elevated. I understand that we must have a second test to see if they are rising or falling, and our next appointment is Aug 3, so I will ask about that. Now to my question: my son was prescribed 6 weeks of Doxycycline (100 mg/day). Is anyone familiar with this antibiotic, and has anyone see success with it? My son's OCD has been going on for >6 years, and he is rapidly approaching puberty. If this is PANDAS-related, is there any hope of beating it? We've learned to live with the compulsions and tics and fears, but the rages when things don't go right are really hard to deal with. Thanks, CJ
peglem Posted July 22, 2010 Report Posted July 22, 2010 Welcome! We've never used doxy, but have had success w/ intial course of rifampin/augmentin combo, followed by 500mg zithromax every other day. My daughter is 15, and has been improving since "real" treatment started the end of last year. And we're not sure of age of onset, but probably infancy, so she's been dealing with this pretty much her whole life. Rages suck, and they were the worst for us, though my daughter is nonverbal and severely developmentally delayed. But getting rid of the rages...it changes your whole life! How long has your son been on doxy, and have you seen any improvements yet? I'm curious about why that particular abx was chosen?
mkur Posted July 22, 2010 Report Posted July 22, 2010 (edited) My son was put on doxycycline mono 100mg BID for acne. Derm knew about pandas and that I wanted something that also kills strep. It helped but aug 850 BID has really cleared up his skin. He had no adverse reaction. Derm was a UT grad so maybe UT promotes it, or there is some kind of marketing bias (received coupon). Edited July 22, 2010 by mkur
Worried_Dad Posted July 22, 2010 Report Posted July 22, 2010 Hmmm... I thought doxycycline was one of the first-line abx for Lyme. Haven't heard it being prescribed for PANDAS / GABHS before....
smartyjones Posted July 22, 2010 Report Posted July 22, 2010 Hmmm... I thought doxycycline was one of the first-line abx for Lyme. Haven't heard it being prescribed for PANDAS / GABHS before.... yes -- it is. usually if you know of the tick bite -- it's 2 -4 weeks. i'm not sure about the protocol for long-term Lyme. i am not sure. . . but would check out. . . i believe it's not usually prescribed for kids b/c of some issue with bone growth. perhaps with a teenager, it's different. again, not meant to scare you, could be incorrect but something to check out. and of course, with all meds -- there are long-term issues that may not be problematic with shorter term use. watch the sun when on it -- can make you extremely sun sensitive!
ShannonOtown Posted July 22, 2010 Report Posted July 22, 2010 My husband and myself just finished a 10 day round doxycycline. The entire family tested high with MP IGG titers and our primary was being cautious since our son has PANDAS. She said she liked this antibiotic because it kills the 'odd' bacterias that other common antibiotics miss.... haven't done any research on it, but I'm retesting myself next week to see if my titers decreased.
justinekno Posted July 22, 2010 Report Posted July 22, 2010 Good advice. I took this recently and when in the sun, even for a short amount of time with sunscreen, I thought my skin was going to catch on fire! I had to stop taking it because it was so bad. [quote name='smartyjones' date='21 July 2010 - 09:56 PM' timestamp='1279763790' watch the sun when on it -- can make you extremely sun sensitive!
purple66p Posted July 22, 2010 Author Report Posted July 22, 2010 Thanks for the warning about sun. We'll be more careful. On the same note, my son's Vit D was extremely low (15 ?forgot units) when it should be >30. He really does play outside a lot and drinks lots of milk, so that number really surprised me. Has anyone else experienced that? I have read that vitamin D can exacerbate autoimmune diseases, and that lower vitamin D may actually improve antibiotic effectiveness. I do know that low vitamin D adversely affects bone growth, and if we add the double-whammy of antibiotic...I've got lots of questions for the doc in Aug.
nicklemama Posted May 19, 2011 Report Posted May 19, 2011 Your son's onset sounds similar to my son's. He's 7 now, 5.5 at onset. At least one dr thought he was bipolar, one thought he had sudden onset of Aspergers (lol), he was diagnosed w/ SPD-sensory seeker and he had ocd. I don't know much about doxy. I wanted to let you know that you do NOT have to have a documented case of strep nor do you have to have high titers for a PANDAS dx. My son has neither. He's been treated for PANDAS for 6 months now and doing pretty well. Rages are gone, ocd is not so intense. He had IVIG two weeks ago.
EAMom Posted May 21, 2011 Report Posted May 21, 2011 Here's a link on Doxycycline: http://www.medicinenet.com/doxycycline/article.htm It looks like it would be fine for a 13 year old...but not recommended for younger children (the article mentions 8 and under). It should work against strep...but don't know if its effectiveness for strep is more akin to amoxicillin (lots of failure) or augmentin or Azith (more clinically effective).
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