colleenrn Posted March 5, 2012 Report Share Posted March 5, 2012 Eight days after removing an embedded tick from my 5 year old son we ran a western blot through Lab corp. The nurse said the results were "normal"- I will see the results tomorrow. Is 8 days too soon to even have anything show up on a WB? He began with hives and 2-3 other, different rashes 3 days after removing the tick. Today is day 12 of rashes. They are less frequent and less severe, but still coming and going several times throughout the day, along with really red ears. He has PANDAS and is acting as he does when he has strep. He was being treated for strep when he got the tick bit and his behavior had started improve. He takes Augmentin 250mg twice a day to help prevent strep. Twelve days prior to removing the tick we added Omnicef twice a day in addition to the augmentin b/c he had a big flareup of PANDAS symptoms (so for 12 days prior to tick bite he was on Aug and Omnicef). Friday he had what we are sure was a big EM in his axillary region on the same side as the tick was (tick was on left neck, EM under left armpit). We stopped the Omnicef that day (LONG story) and he was on no antibiotics for the next 4 days. He had 102-103.5 fever that weekend (other sick family members so it could be from their illness). Took him back on Tues and different NP ran bloodwork and started him on Ceftin 250mg twice a day (he weighs 47 lb.) Does anyone know if it is possible with kids who already have PANDAS and the breach in their BBB to Bb enter the brain faster than other people? TIA. Colleen Link to comment Share on other sites More sharing options...
rowingmom Posted March 5, 2012 Report Share Posted March 5, 2012 (edited) An EM rash is indicative of lyme. I would not wait for a positive WB to begin treatment. If your doctor will not treat clinical symptoms (EM rash is one of them), I would find a LLMD that will. Edited March 5, 2012 by rowingmom Link to comment Share on other sites More sharing options...
colleenrn Posted March 5, 2012 Author Report Share Posted March 5, 2012 He is currently on ceftin 250mg twice per day. He is five and they said he cannot take doxycycline b/c it will stain his permanent teeth. Does the ceftin dose sound right? TIA. Link to comment Share on other sites More sharing options...
LNN Posted March 5, 2012 Report Share Posted March 5, 2012 My understanding is that it takes 3-4 weeks before you'd see antibodies in any test. I'd do the ceftin for at least 30 days. Omnicef is another good one, as it crosses the BBB (ceftin may too - I just know for certain that omnicef does). Not sure on the dose - it should be "treatment" dose for his weight. You can check the mfr's website for dosing. Link to comment Share on other sites More sharing options...
colleenrn Posted March 7, 2012 Author Report Share Posted March 7, 2012 Thanks for replies. They by mistake ran an ELISA instead of WB, but lab said they still have blood and will run WB. Today is day 14 of multiple rashes from head to toe. He remains on Ceftin and his prophylactic augmentin. Very worried mommy here. So unsure if he is correctly being treated. Colleen Link to comment Share on other sites More sharing options...
LNN Posted March 7, 2012 Report Share Posted March 7, 2012 I don't know if the WB is going to be reliable, since the blood draw was so soon after the bite. A full body rash makes me think hives/allergy more than a lyme rash. Any chance it's a reaction to the ceftin? My DD has broken out in hives with both omnicef and ceftin, usually after about 8 days of taking it -wasn't an immediate response. Does the rash respond to an antihistamine or an external like benadryl lotion? Take pictures. Chart/document symptoms and behaviors. But try not to worry. Link to comment Share on other sites More sharing options...
colleenrn Posted March 8, 2012 Author Report Share Posted March 8, 2012 He has multiple rashes besides the hives all over his body that come and go. I also am afraid it was way too early to get an accurate WB. He was on 18 days of Omnicef to treat strep (in addition to prophylactic Augmentin for two years and still currently), then embedded tick, then stopped omnicef for 5 days in case it was an allergic reaction, then began Ceftin. Ceftin and Omnicef are both cephalosporins, so if he were allergic they could both act similarly, but he has big lymph nodes in his neck near the tick bite, is acting worse than when he has strep, and has what I am sure was an EM in his axillary region of the same side tick was on. The more I research TBI, the more I am afraid that the multiple different rashes could indicate the Bb has already disseminated and if so, 3 weeks of Ceftin is not enough. I have spent 10 1/2 years trying to figure out PANDAS and have just begun trying to figure out Lyme, so I am not sure at all if what we are doing is right for my little boy. Any input would be greatly appreciated. Colleen Link to comment Share on other sites More sharing options...
dcmom Posted March 8, 2012 Report Share Posted March 8, 2012 colleen- I don't have a lot to offer, but I wanted to say how sorry I am that your son, and your family is going through this I am heartbroken for you. I have two suggestions for you to try to get in with a doc quickly. I think you are in the Virginia area- but I am not sure. I would consider seeing Dr Paul Beals in Maryland, or contacting Dr Brian Fallon at Columbia U in NY for a referral. I would imagine making sure you get him on the correct abx asap would be important. Good luck. Link to comment Share on other sites More sharing options...
colleenrn Posted March 9, 2012 Author Report Share Posted March 9, 2012 Ellen- Thanks! I have a call into Dr Beals. My brother's kids see his assistant, Deborah. I am on a cancellation list. Colleen Link to comment Share on other sites More sharing options...
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