bulldog24

geez. I would call your doctor asap. If he had no tics before and now they are this bad something must be up in my opinion. maybe have him swabbed again? orchange to a different abx?

get the copies of any Lyme and babesia testing. There may very wellbe positive indicators on the test but it was read as negative. babesia needs special treatment. that will not go away with antibiotics alone as it is a red blood cell parasite similar to malaria. I would be shocked if she had babesia and not Lyme with it. Lyme could make a high sed rate, but its a general marker like you mention.

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969

did I mention it is free

since this is a relatively "new" situation. You might qualify for the NIH study. There doesnot need to be a diagnosis in place. dont be afraid to call. I didnt thinkmy son qualified but called anyway. best thing I ever did. He did qualifyIf you have specific q's pm me. There has been nothing MORE helpful than having a diagnosis from the NIH. not to mention the care we got while in the study. here is a link http://pandasnetwork.org/2011/02/yale-nih-details-on-pandas-ivig-clinical-treatment-study/ again just call regardless of what anything on the page says!

I would do a general culture on the tonsils, not just for strep as you can find all kinds of bad stuff in them. is he getting is adenoids out too? I would MAKE SURE you get post op abx. dont let it be an option. I feel from reading your posts that you have alot of guilt and self blame. try to take it easy on yourself. It sounds like you have done the best you can. Thats all anyone can do. There illness is not YOUR fault! hugs

Wow youhave your handsful1! I am sorry if I missed important details as my brain gets distracted. definitely work both kids up for PANDAS/PANS I would also suggest LYME testing through a goodlab like igenex. I am new to the steroid burst stuff. My daughter 10 didnt do well and had to stop after melting down on day 2. She is mildly PANDAS She got her tonsils out and still got strep 6 weeks later. i wish I had done things differently with her. the first problem is that the ent refused to culture the tonsils. I wish I pushed for that a ###### of a lot more but I am sick and my sever pandas kid was in crisis it was a mess. The ent also refused abx during and after surgery which was dumb. I am mad I didnt insist harder. so those were my mistakes. nowmy severe pandas kiddo 6. We were going to take his tonsils out at the same time. I am glad I didnt. I didnt do it because he got accepted to NIH study around the same time. he got IVIG and got to 100% eventually. he is having a set back ATM and trying a steroid burst. day 1 is today. the thing is if someone has lYME and gets steroids it can get worse,mostly if there are no abx at the same time. In my personal Lyme experience, Lyme can make you seriously have severe mental issues all by itself. So if time allowed and youcan do this I would get them both tested for Lyme thru Igenex. Its roughly $200 for Igm and IgG Lyme western blot. some ins will reimburse you for the test. Then I would test for other coinfection thru quest. Like bartonella(that can cause mental issues) mycoplasma etc. I would try to get the tests drawn before you start abx or steroids. But if you cant you cant,oh well. then I would try like ###### to get them both on some antibiotics ASAP and for as long as possible regardless of the test results. My mind is going to mush at the moment so I will be back.

so ind on 31 and 41? and pos on 45? It doesnt look bad. 31 is specific for Lyme. Ind is like "almost positive, not quite" the other bands are not specific to Lyme. So my gut says retest in a couple months. augmentin should cover the Lyme if its there as long as the aug is a treatment dose. you could always add zith and see what happens. recheck it and see if that IND changes to positive or anything else pops up that is my non MD opinion

Hi. Luckily my son is above grade level in everything despite missing 35 days in kindergarten. I had some unofficial agreements with his teacher about letting me know about strep, and extra bathroom breaks etc. Maybe I should try this route again and if it works so be it and if it doesnt I can go ahead and get a legal plan. he is dx with PANDAS, Lyme OCD ADHD, anxiety, insomnia He was half day last year and this year its full day. I am afraid this is going to be too much. UGG

I would like to have an official legal plan in place for my son who is starting 1st grade end of august. I havent a clue where to start. I looked at the massachusetts website and honestly its waaaaaaaay too confusing. It might as well be in french. What do I do? Some things I would like Extra bathroom breaks as needed Ability to visit the nurse as needed I would like to send a letter home with classmates to notify the teacher who will notify me of any confirmed strep any other ideas?? how do I go about this?

I am hoping to talkmy way out of the steroids when we get there. Otehrwise IDK. I hate to say it like this but I would rather my son have a headache than get steroids. I just dont think it makes sense. This is with dr, b as well. I am trying like heck to get IVIG around here but its not happening fast enough

Going to get IVIG for my son. His last 2 he didnt get steroids. He was fine. That was at another place. I am not digging the steroids since my son has Lyme. Someone fill me in.

I amsupposed to go myself every month for drug monitoring

yes every 2 months or so is normal on longterm abx. Have to makesure the liver is ok

agree

How old is he? Amoxi would be good for as long as you can get it. In a perfect world 4 weeks would be great. Put a moist piece of cotton or paper towel in the ziplok. I dont know why doctors wait until "flu like symptoms apear" Lets wait till the kid gets sick and then I will help you. keep an eye on the site of the bite. Also double check his body again. behind knees behind ears etc. If he was with someone that person should be checked as well. Aproximately (last I heard) about 60% of these ticks carry Lyme. I also dont buy the 24 hour rule. Obviously the longer the tick is on the more likely disease can be transmitted. Anything happens any strange symptoms, rashes, etc off to the pedi you go. No sense testing the kiddo for lyme right now as the body takes 4-6 weeks to make antibodies. kids dont always present with the fatigue joint pain that typically plagues adults. feel free to contact me if you like. I would check him over every day for a few days to make sure there hasnt been a tick you missed.

no sharing towels. I spoke to my dr who is an infectious disease doctor and he said that strep doesnt live long on surfaces, and it has to be on something "alive" I do have several air sanitizers in the house that specifically say kills strep and other things. http://www.hunterfan.com/Products/Air-Purifiers/4-in-1-Total-Air-Protection-30847/ this is a new model it seems, the prics is a lot better than the ones I bought by like $150

Thank you. I have decided that when I ask for a throat culture that I ask for a general culture intstead of just group A culture. If you are only getting a group A culture, its not going to pick up anything else. So thats how I do it now.

colleen your box is full

sending itandmy suggestion is to volunteer 11/2 from 7a-11a that way you can catch the good stuff

The ILADS conf. will be held in Boston in November. Why is this exciting? LOTS of info on Lyme, coinfections and PANDAS/PANS It looks like non medical people are able to attend for a fee. BUT I doknow if you volunteer you can go for free! The PANDAS info is on Friday 11/2 in the PM. If anyone wants the info for volunteering, LMK I will give you the contact info. Also if you need info on the area or anything let me know. I live in Boston. here is the link. pay attention to breakout discussion B on 11/2 starting at 5pm I would also give this info to any healthcare provider that you can think of. especially one that works with your child. http://www.ilads.org/lyme_programs/boston/ilads_boston.php this is for 11/2 http://www.ilads.org/lyme_programs/boston/program/program_friday.php and most exciting look at Friday, November 2, 2012 – Breakout B The Brain, Mental Functioning and Tick-Borne Disease Moderators: Robert C. Bransfield, MD and Sheila M. Statlender, PhD which includes PANDAS/PANS - Here, There and Everywhere Rosario R. Trifiletti, MD The Role of the Integrative Rehab Professional in the Treatment of Children with TBDs and PANDAS: A Sensory Integration Perspective Jodie A. Dashore, OTD, MS Scientific Support for the Effectiveness of Treating Children Comorbid with Lyme Disease and Autism Spectrum Disorder Robert C. Bransfield, MD Mason Kuhn, MS Location: Commonwealth A Clinical Experience Treating Children Comorbid with Lyme/Tick-borne Disease, Autism Spectrum Disorder and PANS Charles Ray Jones, MD Judith G. Leventhal, PhD Sheila M. Statlender, PhD

can you explain what you are doing and why you like it?

I think you are right on. It will save a lot of money to approach it this way. Just make sure you get an antibiotic that covers as much as possible.

ok here ismy opinion. Based on my Lyme and co and my son having PANDAS and just dx with Lyme. bands 41 and 66 doesnt really mean Lyme definitely. Those two bands are not specific to Lyme. Other diseases and cause those two bands. But with Lyme, when you add a new antibiotic (augmentin) it can cause a herx reaction, which flares everything up. I am \newish to the Lyme and PANDAS combo. My understanding is to treat lyme and co first then do IVIG. \\ I know people that do both at the same time that is my 2 cents

I came across this website for an animal lab(I have no connection to) that tests pets for many different things that may be of interest toour pandas/pans kiddos, like strep pneumonia,strep pyogenes, mycoplasma to name a few I cant recall posting it before so here it goes http://www.zoologix.com/dogcat/Menu.htm If anyone uses the lab please let me know. prices and directions included. You will need a vet to help you out